At The End Of My Rope

Another Day At The Office

2012-01-24T10:45:00.000-08:00

I've been noticing this grey spot right in the center of my vision in my left eye. I didn't think much about it since my eye Dr. mentioned I had floaters. I knew when my atrial fib was acting up sometimes the vision in that eye got a sort of aura when I tried to look at things.

Well since it's been annoying me for a week, I went back to the Dr today.. And received not so good news.
It seems I have a Retinal Occlusion in that eye. So he checked the carotid arteries in my neck and all appeared normal. so he's guessing a possible blood clot broke loose and invariably settled in my eye.

Great... but just another medical issue to add to my "Medical Resume" The good thing is that I can still see peripherally which means my eye is getting oxygen -just not enough at the moment. There is this annoying oval/egg shape dark spot direct center of my eye. Which may or may not go away..

No, I'm not happy about it. But after all I've been through this is just another day at the office.. Tomorrow will be busier I'm sure once we get the Retinal specialist, my cardiologist and Shands in the picture.

Now to warn a few Dr's what to expect tomorrow!!

Today is the First Day of The Rest OF My Life

2011-10-23T16:01:00.000-07:00

How many times have we all said that ? A more apt question is: How many times have we actually understood the meaning of that sentence and carried it out?
Every time I hear those words I wonder. Today I am 20 years old. Well , in all truthfulness it is the 20th anniversary of my first lung transplant- or my Lungiversary.
On this day 20 years ago my life as I knew it changed forever! I remember waking up in SICU on a respirator. Major panic! I had never been on a respirator before in my life, and honestly never considered this might happen to me. I remember after 3 days them attempting to remove the respirator, only to have my new lungs fill with fluid. Now I've always been the type you simply do NOT touch my nose! The nurse did try to prepare me for the placing of a tube down my nose into my lungs. To my defense this was after little cooperation from her with regards to telling a person heavily medicated on pain meds to "hold your mask up so you get oxygen" My addled mind kept trying to tele -communicate to her that I couldn't get the strap around my head. The rest is history. I woke up back on a respirator (most depressing day) and later was told - laughingly by my Dr. that as the nurse touched my nose with the tube, I punched her and tried to run away dragging machines and all. He said he had no idea that a person as sick as I was had that much strength.

This was me on October 24, 1991. Not my best pre-birthday photo. But I got the best present anyone could ever ask for. I lived. I was so swollen from the Prednisone and massive amounts of immunosuppression that my family barely recognized me. If you've never been intubated, believe me it is nothing like you see on the TV medical dramas. Either that or my drug induced foggy mind developed one horror story photo for me to remember the day they pulled that tube out.

After a few more days of trying to get my lungs to work, they removed this yet again. My Dr. sat on the edge of my bed calmly telling me that I may end up back here. Not everyone gets to stay out. All the time I was thinking "Not me! No way! This fella has no idea who he's dealing with!" I left and never looked back.

I later found out that my family was told the lungs I received had been badly damaged in the accident, but as my lungs were already removed and I was at the point of no return they put in the donated lungs. There was a strong chance I would be back on a respirator awaiting a re- transplant. I knew I was a strong person, but I began to realize just how strong I truly was, mentally and emotionally.

Yes there were pitfalls. I had a serious bout of rejection that I slept through (thankfully) . The Dr mentioned to my Daddy he may want to say an extra prayer because at that time it was all up to God. Thankfully He still considers me a work in progress with alot more work left to do here. I did come out of that episode with my sat's at 100% and stayed that way.

All I know of my donor was she was 34 years old, a white female, she died in a tragic accident, and we were a perfect match. It was all up to me to keep what she gave me so unselfishly healthy and live my life as if I were dying. Every moment to the fullest!

So.. the next time you say, Today is the First Day of the Rest of MY Life will you live it differently?

October 22,1991

2011-10-22T16:32:00.000-07:00

It was on this day, 20 years ago I received a call that changed my life forever.

The time was 11:00 PM. While not usually a night owl, I was awake. I was packing clothes for a much anticipated weekend trip to Orlando. Arrangements had already been made to have oxygen waiting at the hotel. I had been waiting for a lung transplant for 18 months. Each passing day reminded me I was on borrowed time, after being given 12 months to live. I desperately needed time away from reality for awhile. Each day feeling myself get weaker and requiring more oxygen.

I remember Mom calling me to the phone. It was my pre-transplant coordinator asking how I was feeling and if I wanted to make an out of town trip. My standard reply was, of course I'm leaving for Orlando. "Wouldn't you rather come to Pittsburgh?" " We have a pair of lungs for you." It was at this point I wanted to hope, drop to my knees and pray, but I knew to not get excited. I could get all the way there and it be a dry run. Meaning the lungs weren't viable after they got in to get them out of the donor.
After hanging up the phone, I immediately called the Air Ambulance that was supposed to be on standby in Alabama only to find it was not in Alabama but in Texas. This simply would not do. After the pilots got in- the plane fueled and preflight done- the flight alone would be close to 2 -2 1/2 hours. This would put me over the time frame to receive a transplant. I only had a window of 4 hours to get the Pittsburgh, and be sitting for the go ahead from the retrieval team. Thankfully UPMC had a plane sitting in Tampa that had just returned from taking a recipient back home. I called the original company to cancel and began to get suspicious, he did not need to know where my aircraft was coming from nor did he need the tail number of the plane.
We arrived at the FBO ( private flight area) and began to wait. Suddenly 3 customs officials came walking in. I whispered they better not be after my damned plane! They were! Seems they received an anonymous tip that this particular plane had not cleared customs after returning from the Virgin Islands. It had as it was sitting in Tampa. The trauma nurse and pilot both tried negotiating with customs to no avail. They were determined to break down ALL the machines I would need to keep me alive during the flight. The pilot offered to have one of them fly with us to Pittsburgh, tear everything apart upon landing and he would fly him home- we received a negative response to this suggestion too.
I was slowly watching my chance at life slip through my fingers. I made a decision. I asked for a quarter. I went to the pay phone (yes there were still around) and called the local news station. I chose one that loves stories like this. I spoke with the news desk and mentioned it was a matter of life or death. When the gentleman asked who's I said mine! I told him customs would not release my air ambulance for me to receive a lung transplant and there was a slim chance I'd ever get a call again. Within minutes, we heard over one of the customs officials radios "Who the hell called channel 4 !" They looked at us and I sweetly smiled, raising my hand and replied "Guilty"
However it worked we were on our way! I must say that was the longest - most thought provoking flight of my life. Flying through the clouds and reflecting on my life. As we landed it was a rush to get me to the hospital. You see, I was supposed to be opened up and ready for new lungs at 5AM and we had just landed at 5AM.It was a mad dash in an ambulance!
As we were awaiting for the official "go" I was sharing jokes with the anesthesiologist in the ER.

Suddenly one of the physicians looked at me and asked " Are you ready?" I replied " Is it a go ????" wide eyed and hopeful.. He smiled the most gorgeous smile ever - and said "It sure is"
And I was wheeled into the operating room on the biggest adventure of my life!

Never forget where you came from

2011-10-17T06:03:00.000-07:00

As this is the beginning of a very special week for me, I wanted to take a little time and reflect back on a few important times in my life. My parents always said "Never forget where you came from, this is what shaped your life". So as I near a 20 year milestone with my first lung transplant, I wanted to share with you (never seen before on the web) a few photos over the next few days of how I came to be the person I am.

If you look very closely at this photo, the person in the middle is me. I was in my late 20's .You may also notice that I was on oxygen, my feet using the canister as a foot stool. In this photo I was already on the waiting list for a heart/ bi lateral lung transplant. I always wore my hair in a long braid because it kept getting tangled in the strap for my oxygen when I carried it. I remember when I got all my hair cut off , because the thought of 3 months in a hospital with long hair wasn't appealing. Can you believe no one noticed for a few days! Everyone was so used to seeing my hair pulled back, they never considered that me- the one who swore to Never have short hair again had cut it all off.

Even on oxygen I refused to give in. I walked everyday, even if I did not feel like it. Braving the neighborhood dogs who always seemed to have the fence gates left open. What did it matter? I had seen jaws. I had oxygen. All I needed was a way to set it off right ? :)

I have never forgotten these times. I promised to honor my donor each and everyday and live my life to the fullest to honor her a woman I never knew. She was 34 and we were a perfect match. She also died as the result of a major accident. I used to cry thinking that at her age she must have had small children at home who would never know Mommy. But it is also my deepest hope that they were also told stories of her bravery and how she saved the lives of many!

We never know

2011-10-01T17:18:00.000-07:00

This afternoon as I was cleaning out my Xterra from today's show our Mail man arrived with the mail. I walked out to meet him, and asked how he was doing. He and his wife live just down the street, so we've gotten to know each other pretty well.

Imagine my surprise when he replied, not too well. Now this is a man who is always chipper and positive. My heart literally broke when he told me today was his first day back in a month. His wife had passed away. She was only 44 years old.

They recently found out she had an enlarged heart and her Doctor was trying to get it under control. She passed away suddenly of Congestive Heart Failure. I've had this blue funk cloud over my evening after hearing the news.
This has brought back many memories for me as well. As a teenager I was a CHF patient. When I hear of anyone suffering from CHF I empathize as I remember how I felt all the times I struggled to get mine under control. For years I randomly coughed blood and we never knew why. It was discovered when I was 17 that the pressure inside my heart and lungs was 6 times higher than it should be. This high pressure was causing my blood vessels to bust and I was literally drowning in my own blood. Not everyone has this same issue with CHF.. Most retain fluid and take diuretics to control the fluid retention. Symptoms are swollen feet, ankles, hands, etc. I was always one of those lucky people that it never showed , asypmtomatic. That is until it was at a critical stage.

At one point I remember driving myself to the ER only to discover it was CHF rearing it's ugly head again. Note to self- Do not driver yourself to the hospital at 3AM and then call to ask your parents if they can come and get you. Or at least hold the phone very far from your ears. Lesson learned.. Call Mom & Daddy first.

Please take a moment to remind yourself that not all health defects show themselves, and give that stranger a smile or a helping hand. It may just make their day..And please say a little prayer for my Mail man Tim to help him through this rough time..

To Blog or Not ToBlog

2011-09-26T04:54:00.000-07:00

I've recently heard from a few of you that I haven't blogged in awhile. Looking at my last post, I would have to agree. I want to thank you for being my reminder, and giving me something to truly think about these past few days.
I've discovered that lately when I don't feel well, I tend to retreat into myself as opposed to putting it out there in cyberspace. I mean, why put my misery off you right? Though it isn't really misery, we long-termers have learned to just keep going no matter what. There is always a "good day" right around the corner.

Before the days of Facebook and social media, I kept a journal. I was obsessively diligent in writing my daily thoughts and actions each night. This journaling literally saved my life, not only emotionally, but medically. Each time I open one particular journal (this one I keep handy) I am vividly reminded of that time 12 years ago. I remember what I endured medically, how I felt each day with my strength and life slowly ebbing away. But mostly I remember how I wrote about it, and how it made me stronger mentally to carry on.

Now, today we have blogging. So my decision is to write about my bad days as well as my good or remain quiet. My Reader's Digest (condensed) version is this:
The last few months have been a trial with new developments medically. I've had enough ct scans, and labs to keep me happy for another decade! I trudge through all these new aches and pains with a vengeance.
However, inside is that nagging thought, "will this be one of those "bad years"?" If you have severe medical issues you know what I mean. I live in dread of another winter like the one I endured in 2007/2008 which carried over to 2009. Actually I am still paying for that time too. These past months have brought about more "not so good days" than good days. I refuse to believe they are bad days yet, I haven't hit the worst day I've ever had on a scale of 1-10.

Through all this, my lung function is stable and remains the same. Plus my kidney function is great too. I am determined to keep these 2 organs in top condition as long as I possibly can, these are a cherished Gift. I am confident these other aches and pains are merely the aging process, and I will accept and conquer these like a champ. After all if not for 3 graciously generous families I would never have been given the chance to conquer the aging process .

Dilemmas and Bucket Loads

2011-07-28T09:25:00.000-07:00

Many of us feel overwhelmed in our daily lives at one point or another. I am no different. I've been facing a small dilemma of whether to blog about issues I'm facing or keep quiet. On one hand, if I blog I hope it does not change the mind of someone who is awaiting that precious Gift Of Life- an organ transplant. However. on the other hand it just may strike a chord in someone facing a similar issue and help them feel they are not alone.

I've been a little absent not only here but also on my FaceBook fan page, mainly due to the fact that my energy level for quite some time has seemed non-existent. Of course, I did have to treat the lower left corner of my lip for pre- skin cancer, which in itself was no fun. A person never truly realizes how much actually touches your lips until it burns at the point of contact.. Oh and brushing your teeth- well that was a major feat of gymnastics!. I'm an avid brusher, so I decided to bite the bullet and deal with the pain until I could get the toothpaste washed off.

On a good note, I am still off Insulin.. YAY!!! My blood sugars are in range and I've even had a few lows. My HgbA1c was 5.3 at my last visit so the endocrinologist is ecstatic. Why I stressed over telling him I was off insulin amazes me.

I have however been having alot of pain. At first this was attributed to muscle and joint pain-but we now suspect that my Thyroid may have something to do with it also. I felt extremely stylish with an ace bandage wrapped around my ankle for 4 days! They found my thyroid to be enlarged and with cysts all over it via a sonogram. After the official reading we'll make a game plan. Adding to that, me the person who greets each day with a devilish grin and "hits the ground running" has lost her "get up and go" . Oh,I still greet each day with a devilish grin, but the energy level seems to be on vacation. This is completely not my style, so I am conducting an extensive search to find which tropical island my energy fairy has gone to. No more Pina coladas on the beach- honey time to come home!

And this week has brought on a new development. Remember how good it feels to stretch when you wake up? Oh..me to... Since Monday each morning I stretch it triggers my a-fib rapid heart rate.. No fun and it totally ruins that wonderful stretchy feeling.. I'm now taking extra meds for this-lucky me.. Just more to add to those little boxes to remind myself. I promised my cardiologist I'd call him if these "episodes" became more frequent than say.. 1-2 times a month. Think this falls into that category? I've had ablation for one form now I guess my heart is lonely and making itself known..

I also know that these transplants won't last forever-but- this is not that time- trust me. ( evil grin)

Have you heard about Rock Scar Love Designs?

2011-06-24T06:47:00.000-07:00

While surfing through FaceBook I found this great page celebrating organ transplant recipients with the coolest T-shirts for us ever! You can find it at Rock Scar Love .

This is a company founded by a transplant recipient- for all recipients to celebrate their scars and all that goes with them. Now you may think it wrong for someone to make money off our scars- but I wholeheartedly applaud this venture, mainly because it fills a void in promoting awareness. We can actually wear ladies tank tops or t-shirts with great sayings, plus more items to purchase.

She is active in the transplant community as well. I've ordered my shirts and will wear them proudly. After all, as you've heard me say before "I had to die to get these battle scars".

This I "borrowed" from their page:

Mission

ock Scar Love is a modern, trend setting clothing company focused on helping individuals with physical, mental and emotional scars to embrace the lessons they represent We believe that scars are sexy and when embraced they can only change lives for the positive. We look to provide sexy scar owners a way to tell their story and inspire others to live passionate lives.

Our corporate slogan of “You choose” is the heart of human existence … do our lives define us or do we define our lives? Each human is given struggles in life. Our experiences are our loads to bear…our defining moments. Do they define us or do we define them? We can all choose to either use our experiences to empower us and make us amazing individuals, or to use them as an excuse for why we can’t do something. Everyone has the capability to choose to live every day, every hour and every moment with passion; to change the aspects of their lives that make them unhappy. RockScar Love Designs challenges fans to take their life struggles and use them as a stepping stone to greatness.

Tshirt, women’s tanks, burnout tees or accessories…we have a way for you to rock your scar with love!

There is currently a giveaway on their page for a great tank top. Please check it out and enter! giveaway

Caustic or Costic???

2011-06-03T14:51:00.000-07:00

Like my new word?

Caustic is what this medicine is doing to my lip.

Costic is when I saw the price I paid vs the retail price.

I will never understand why pharmaceutical companies can't make small tubes of medication as opposed to larger ones that end up being thrown away. I mean geez, I have a 2mm spot on my lip that I use a Q-tip to put this medication on for 2 weeks tops. And the smallest they make is 30gram tubes. Do they expect us to use it all over or what?

Well, this is the second day and my lip looks pinkish and severely chapped. I am having withdrawal symptoms from Chapstick. You can't use it while using this medication. I can us Vaseline -but my tubes are so lonely there on the shelf and Vaseline doesn't last as long either.

I've had an additional situation and not sure if it's separate or aggravated by this medicine.

My heart has been racing like the wind since yesterday. Got it calmed down yesterday evening only to have it start again this morning. I'm sure all will calm down eventually.
I got alot of sleep last night and feel much better.

So, to take my walks I need a bandaid on the area (feat of the impossible) and a hat. I tried a hat yesterday and for the life of me couldn't figure out how it will protect my lip with the Florida sun. No matter how I situated the hat it just did not shadow my face. It was a big straw hat -totally me- with rhinestone dolphins and jewels all over the brim.. My beach day hat. I opted for my baseball cap and walked with my head down.. I'm sure the neighbors thought I was insane or something.

Today we have to wait for it to cool off. Little DB would never make it in this 90 degree heat. I usually carry him most of the way at night-but he does much better if we wait.

We'll see how this crusty lip looks in the morning!

Upheavals and Understanding

2011-06-01T12:59:00.000-07:00

While it's been awhile since my last post, I have thought about finding a moment to sit and blog.
Update:
I'm still off Insulin. Will let my doctor know at my appointment this month.
I got the INR machine to test my own anti-coagulant level. It's fast and simple, just like checking my blood sugar. But it does save driving to Venice to the Doctor to have it done.

My Dermatologist did a biopsy on the lower left side of my lip last week. I've had chronic chapped lips for eons and joke that Chapstick and Carmex should send me a profit sharing check. Well, after a severe bout of stomach virus with a high temperature, my lip looked terrible. Plus it happened at appointment time. She didn't like it nor did she like the fact that it hasn't healed in 2 years.
I am not ashamed to say, I almost passed out in her office. My stomach still had fully recovered and I was queasy anyway. You know it takes us transplants much longer to get back to "normal" than the healthy. So I waited a week and got the results yesterday.

It came back as pre-cancerous and she called in a cream prescription. After talking to her nurse and my pharmacist I am dreading using this cream. She said it would make the area look like road rash. NOT a good visual in my eyes. I was joking with the pharmacist and he stated that was a nice way to describe what it'll do. His closing comment mentioned raw meat... Great ! just what I want others to see when they look at me.
I asked him how I am supposed to eat with my lip like that? "Smoothies" I suggest Smoothie King on 41.
Now we were joking through all this-but I know he was serious.

This brings up alot of questions living in Florida. Can I still take my morning and afternoon walks? Sure - put a large bandaid over the affected area. Have you honestly tried to put much less keep a bandaid on the lower left corner of YOUR lip?The dermatologist put one there after the biopsy and it stayed all of 30 minutes. It was worse than trying to drink water after leaving the dentist! I was also told I need to wear a hat on my walks. Hmmmm.

I asked why can't it be cut out and forget it? The pharmacist replied "But you don't want this scar on your lip". "Well, it would add to my Pirate persona -plus just think I'd be a hit at the Medieval Fair and not need make up~!" He thinks I'm insane anyway, so we both got a good laugh.

I just had another thought . How do I apply it? I can't use my finger-it'll get road rash too right?

Oh the joys of life are fruitful and many!

This I too will conquer!

Cinco De Mayo !!!!!

2011-05-05T06:01:00.000-07:00

This day six years ago was one of the luckiest days of my life!

You see, on May 5, 2005 yep, 05/05/05 ( gotta be lucky) I received my kidney transplant.. To make it more coincidental my surgeons name was Dr. Foley! Those of you not around medical issues probably wouldn't understand the humor.The relation of Dr. Foley and "foley catheters " was not lost on me.

********** So ..... today I am 6 years old **********

I get to run, play , jump on the bed to my hearts content1 I'm a kid again!!!!

But none of this would be possible without the gracious Gift of Life from my donor Susie Paxton. There were a myriad of coincidences that year.. My Donor Dad had removed dear Susie from life support on her birthday May 3,2005- and graciously gave me a true Gift on May 5, 2005. I lost my Daddy on June 3, 2005 and he was 30 days from his birthday on July 3,2005. I wrote an anonymous letter to my donor family one year later and through a few letters I finally spoke with Ron Paxton who I now call my Donor Dad.

Life throws us many curve balls, but it is true that when one door closes a window opens.. I discovered that Susie and me had many similarities with very different outcomes. I owe her and Donor Dad my life. For you see if not for the kidney transplant eventually the lung transplant and the rest of my health would have gone into a steady decline.

If you have a moment, please visit my "honor page" and meet Susie... She is a true gift to all !

Insulin - Day how many?

2011-04-27T14:26:00.000-07:00

It seems to have gone by so fast and yet I'm still insulin free. Yes, I have exercised more (YAY) and yes I am watching what I eat. However, I no longer have that constant stress of worrying about my blood sugar dropping unexpectedly. The churning feeling is gone and I actually was able to feel & hear hunger rumbling in my stomach! Yes I waited until I was actually hungry to make sure I could still feel it :)

This past week has had me watching my health in other areas as well. My INR test for coumadin last Thursday showed an astoundingly thin blood level for me.. #7-no wonder I have bruises everywhere! Scared the Dr's office so bad I was told "Don't get cut-don't get a scratch" I mean come on, I have 3 dogs.. Where do they think the bruises came from??? Today it read at 1.4 which is great-but to them too low. They want it between 2-3 and my lung transplant team want it 1-2.. Gonna let them hash it out.. Just another pull to deal with between physicians.

With the heavy tree pollen content around here I've also had a drop in my home spiromerty. I called and the decision was to take 40mg Prednisone (the bane of my existence) for 4 days ... There goes the blood sugar control.. It may put me back on insulin for the duration to keep it stable.

So far today I haven't needed it-but do have the Novolog sitting on ready just in case.

Will find out the blood sugar at dinnertime..If you hear a loud screaming "NOooooooo" it's only me..

Insulin -Day One

2011-04-14T15:55:00.000-07:00

So yesterday I chose to not take any insulin and work on modifying my eating and exercise habits.

I was pleasantly surprised to find that my blood sugar readings were within range except at bedtime. This is where I'd had some yogurt as a snack so the reading was what it would have been on insulin too.
This morning I wasn't in the 70's to low 80's but at 92. Lunch was 101.. so I'm attempting day 2 now.

I have developed a slight headache which I'm not sure is related or not. I may start taking the insulin again depending on how my numbers look. I've also ramped up my exercise program and water consumption. Both of which will benefit me in the long run.

Please understand this is not something that you should undertake because it's currently working for me. I have merely gone back to the severe controls that used to work for me before and gave up all the food I started eating and shouldn't have.

Should my blood sugar readings rise...I will be first in line for that shot. For the moment it's nice to have hunger pangs and not insulin entering my blood stream to work.

Insulin

2011-04-13T13:19:00.000-07:00

I haven't posted in along while mainly due to a few health issues, but I didn't want to post them here and make anyone worry it might happen to them too. When I don't feel well I normally go into seclusion so my body can regenerate and recuperate.

Todays posting has been on my mind for quite sometime now and this I need to get out there.

As many of you know I voluntarily started using Insulin (long-acting) last year because I could read the writing on the wall. My blood sugar levels were rising and knowing that Prograf and Prednisone were the culprits I wanted to correct it before it got bad.
I started with 15 units a day and have finally settled at 8 IU.Well that's what my Doctor has me on. I've been using 6IU for the last 4 months. I am still having morning low readings and sometimes waking in the night with severe lows.
The one thing bothering me at the moment though, is the churning in my stomach all hours of the night. If you're on insulin you know this is when the time release is "releasing" the insulin into your system. Three times last night it woke me up. As usual I lay there waiting for symptoms of low blood sugar to appear and when they didn't I knew it was time release at the wrong time. This is happening alot lately and I would really like to get a full nights sleep without waking- waiting-then trying to go back to sleep after being on full alert.

I remember I had a radically self-motivated strict diet prior to insulin. I am considering going back to that diet. One big issue I have with insulin is it gives me too much freedom. Freedom to eat things things I shouldn't; sweets, potatoes, bread-you know all those carbohydrates that love to raise our blood sugar. It also creates the mind set that I have insulin why exercise? It'll only lower my blood sugar and I'll have to eat to bring it back up. What a vicious cycle this insulin creates.

So we sit back, eat what we shouldn't and are afraid to exercise... Sorry, not why I got these 3 organ transplants. This is NOT honoring my donors and their families.

How do they do that?

2010-12-08T11:44:00.000-08:00

Ever wondered how they transport a human heart for transplantation keeping it pumping?

Tonight on ABC World News Tonight at 7PM EST they will explain it all..

You might want to program your VCR or plan to watch it.

October 23,1991

2010-10-23T07:47:00.000-07:00

       It hardly seems that nineteen years have passed since one anonymous, caring family changed my life.
So many years have passed and I've experienced so many things I never thought possible, yet I remember this day as if it were yesterday......
       It was just past midnight on October 23,1991 when my mother woke me for a phone call. I should have known by the excitement in her eyes who the caller was. It was my pre-transplant coordinator from the University of Pittsburgh Medical Center (UPMC) telling me there were lungs available and I was # 1 to receive. I also knew that I could get there, and it be a "no go" meaning the lungs deteriorated too much in transport or were too damaged to transplant.
     It is because of this one day, I learned to have more patience than the normal person should need, and survival. The survival part will be explained to you soon.
      I contacted my Air Ambulance company who had ben contracted to fly me to Pittsburgh from Jacksonville, Florida. They were under contract to have a plane waiting in Alabama for just such an emergency. They returned my call with the grim news that a plane would be arriving from Houston, TX. Now being an airline ops agent I knew this would not get me to UPMC in my allotted 4 hours. I mentioned that after the pilots got there, fueled, checked the weather, did a pre-flight and a 2 hour trip to JAX I would not make the 4 hour window necessary. I could feel my chances slowly slipping away. I mentioned I would call UPMC for the OK.
      Upon calling and speaking with my coordinator he mentioned they had a plane sitting in Tampa that had just taken a patient back to the US Virgin Islands and it would be sent to me. Hurray!!!! I called the air ambulance back with the news and he was visibly upset. When he started asking when the arrival was and the tail number alarm bells began going off and I asked why he needed this info since he was no longer in the equasion. "Merely making sure all goes well for you." Yeah right. I advised him I was in aviation ops and all was fine but thanks anyway.
       We headed out for the private section (FBO) of the airport to await my "chariot". While we were sitting in the lobby 3 customs agents walked in and glanced my way. "alarm bells again" I mentioned : "They better not be looking for my plane!" Well it turns out, they were. The plane landed and the medical staff came looking for me and customs reared it's ugly head. Seems they had a tip (did I mention those alarm bells from the air ambulance) that a medical plane was landing that had not cleared customs prior to arrival. The Captain told them he was in the US Virgin Islands, then West Palm Beach and finally Tampa before flying to JAX to get me. He even showed them the log book. Well those lovely customs officials demanded to take apart all the medical equipment onboard and inspect it. No way said the DR. onboard, 'These are needed to keep her alive prior to transplant." The pilot offered to let them fly to Pittsburgh -take apart all the equipment upon landing and then he would fly them back to JAX-no way.
         I was slowly watching my chance at life slip away.... I made a snap decision and asked for a quarter. "Why?" I'm calling channel four news, they'll get my plane in the air. Without being noticed I walked to a pay phone and called the news station. I explained that customs was holding up a "life flight" air ambulance on a bogus tip. When I was asked why I was calling, my reponse was "This is truly a matter of life and death-and it happens to be MINE!" Within seconds a loud voice boomed over the customs walkie talkie "Who the hell called channel four!!!!" They all looked at me as I politely smiled and held up the phone receiver. walkie-talkie "Get that damned plane in the air!" Our plane was released (not without dirty looks) and I was finally on my way.
         The medical staff onboard were fantastic. Any need was immediately seen to and I was told to relax and enjoy the trip. Flying through those clouds on a dark night felt like I was flying to a new life and new adventure. That feeling is still with me today. Each day is a new adventure to be enjoyed with absolute relish and abandon.
         Due to the delays we got to Pittsburgh airport late. I was rushed to UPMC where the Dr's said they were cutting the time very close. I should have been on the table, old lungs out and waiting for my new ones by 5AM. I didn't arrive until 5AM.... As I lay on a gurney in the ER telling the staff jokes one of the Dr's. looked at me and said :"Well are you ready to go?" My eyes got as big as saucers, I smiled and asked, "So, it's a go?" "Yep, hurry up with that punch line before we put you under."

And thus my new life began.....

        It was not all cakes and punch, don't let me kid you. After being taken off the respirator I had to be placed back on due to fluid build up in my lungs. That is a story in itself if anyone cares for a laugh. I know a nurse who certainly isn't laughing to this day. When I woke up and realized I was back on the respirator (the bane of my existence) it had to be the most depressing day of my life! "Why did I do this?" Alarms started going off! Staff rushing around and entering the cubicle next to me. The recipient next to me turned critical! Talk about an attitude adjustment. "I opened my eyes. looked to heaven, and said "Thank you God, I never meant to think that way!" "Just please don't let me have to be shocked with all these (49) staples in my chest".

     I was extubated in a few days and transferred to the lung transplant wing. Whew.... Getting closer to home. I did suffer a severe rejection, but came out of it with my sat levels at 100% not to shabby for a girl who lived on 46% room air for most of her life. I was told that the new lungs were severely damaged in the accident, and I may have to be placed back on a respirator to wait for another "good" set of lungs. I thought,"no way-YOU don't now me very well."

       Yes I have learned alot and organ transplantation has made me the character I am today. But would I trade one single minute good or bad? Not at all.
So today please take a moment, look up to the sky and thank my anonymous donor for giving me a life I never dreamed possible. She was only 34 and from Lancaster, PA.
And if you aren't an organ/tissue donor please consider it. Don't wait until it affects you or your family personally. There is a family out there just like yours watching the life slowly ebb out of a loved one with a terminal diagnosis.

Share your life....Share your decision... Become an Organ Donor

Live your Life as if you were a pencil.

2010-09-13T10:42:00.000-07:00

A PENCIL MAKER TOLD THE PENCIL 5 IMPORTANT LESSONS JUST BEFORE PUTTING IT IN THE BOX :

1.) EVERYTHING YOU DO WILL ALWAYS LEAVE A MARK.

2.) YOU CAN ALWAYS CORRECT THE MISTAKES YOU MAKE.

3.) WHAT IS IMPORTANT IS WHAT IS INSIDE OF YOU.

4.) IN LIFE, YOU WILL UNDERGO PAINFUL SHARPENINGS,

WHICH WILL ONLY MAKE YOU BETTER.

5.) TO BE THE BEST PENCIL, YOU MUST ALLOW YOURSELF TO BE HELD AND GUIDED BY THE HAND THAT HOLDS YOU.

We all need to be constantly sharpened. This parable may encourage you to know that you are a special person, with unique God-given talents and abilities. Only you can fulfill the purpose which you were born to accomplish. Never allow yourself to get discouraged and think that your life is insignificant and cannot be changed and, like the pencil, always remember that the most important part of who you are, is what's inside of you.

Fleming Health Care Repeal Update

2010-09-01T05:57:00.000-07:00

As manyo f you know I stay pretty active with what out government has in store for us..
I received this email today and since it's written to understand I wanted to share it with everyone.
If this upsets you, WRITE a letter-write alot of letters. Make phone calls!

We the disabled deserve better than this..We will be paying out more money we do not have, with no way to earn more. The future looks grim for the disabled. Is it the goal to herd us back into seclusion and out of public eye. Maybe our government would rather the seniors as well as us-be placed in governemnent run homes and take away our last bit of dignity.

FLEMING HEALTH CARE REPEAL UPDATE

Health Care Reform is Paid for by Cuts to Medicare

The enormous health care bill signed into law will be largely paid for by cuts to services many seniors depend on. Here is just a sampling of the Medicare cuts, totaling more than $500 billion, to come:

In 2010:

Medicare will cut reimbursements to inpatient psychiatric hospitals.

In 2011:

Medicare cuts to home health agencies begin.

Wealthier seniors ($85K/$170K) begin paying higher Part D premiums.

Medicare cuts begin to ambulance services, ambulatory surgery centers, diagnostic labs, and durable medical equipment.

Seniors are prohibited from purchasing power wheelchairs unless they first rent for 13 months.

New Medicare cuts to long term care hospitals begin.

New Medicare cuts to hospitals and cuts to nursing homes begin (FY12)

Medicare Advantage cuts begin. Participating seniors will face premium increases, benefit cuts, or both.

In 2012:

Medicare reimbursements for dialysis treatments are cut.

Medicare cuts to hospice begin.

In 2013:

Medicare reimbursements to hospitals that serve low-income seniors will be cut.

WHAT THIS MEANS FOR YOU: When providers get paid less by Medicare for services seniors depend on, many may be forced to decrease their services or close some of their locations just to make ends meet. This means that seniors may experience a decrease in their access to essential care, which is already a problem for many in rural districts. The cuts to Medicare Advantage may cause many of these insurance providers to stop offering plans to seniors, forcing seniors back into traditional Medicare.

THE DOCTOR'S DIAGNOSIS: Senior should not have to bear the cost of health care reform. Instead, we need common-sense health reform that will lead to quality, affordable health care, without breaking the bank, or cutting services to seniors. We need to repeal the bill.

As this process unfolds, I will continue to work to represent you, bring common-sense to this debate, and work to repeal this unpopular law.

Sincerely,

JOHN FLEMING, M.D.

Member of Congress

P.S. If you’d like more information, please take a minute to visit my newly redesigned website at www.fleming.house.gov or follow me on Facebook at www.facebook.com/repjohnfleming or on Twitter at www.twitter.com/repfleming

What would you do?

2010-08-27T09:05:00.000-07:00

    While I realize that many wonder if they should have a transplant, I don't remember thinking this way.
After all, my first one was almost 19 years ago. I do remember making sure affairs were in order just in case. I also realized it was a 50/50 shot. I might NOT get that call in time. I spent more time relishing seeing the waves crash the shore at the beach, wind lightly swaying the palm trees, and rain.
      I did however try to put my life into perspective.. Back in the middle ages a person had to be given the death sentence of "12 months to live" to be placed on a transplant list. I remember the shock the day I heard this, "But I'm feeling fine." I also remember waking on that fateful 365th day and wondering if it would be my last. I did not ponder if I should get a transplant.
      When I was told that I would need a second lung and then a kidney, my thoughts were "Where do I sign up?" I had enjoyed a life I never imagined possible for 9 years with the first transplant. And back then the survival rate was 50% past one year and 3 years survivability... I AM STILL HERE... Thought that needed to be emphasized.

So my question to you is:

If you were told you needed an organ transplant or another organ transplant :
What would you do? And Why?

Medicare Part D and other unfair practices.

2010-07-28T16:17:00.000-07:00

I guess you now know by the title I'm in a not so good place with the coverage the seniors and disabled are forced to accept. I received that wonderful notification that I was $120 away from "THE BLACK HOLE" coverage gap-purchasing only my daily meds required for survival. I've been extremely careful, trying to not tread those waters. After all, I'm still paying off all those wonderful meds from 2008!
     As luck would have it, I started coughing again. This past Saturday it got a new complication. I was coughing up blood. Now this is a MAJOR red flag for me, since this was one of my original symptoms. So to say I was scared is an understatement. After calling my transplant coordinator, some cough suppressant with codeine was called into my local pharmacy. Imaging my surprise when I was told the cost was $125.00-because my Part D Provider CVS Caremark Silverscript does not cover cough suppressants. The pharmacist suggested a lesser expensive one and I was caught in the hurdle of ruining my coordinators day off. I called CVS Caremark when I got home and got the usual song and dance.. "Well if it were a Monday, we could push through an authorization/" BUT that takes 72 hrs- "Well yes". Completely unfair since they regularly change the formulary forcing all participants to switch meds-bother Doctors- JUST every other month or so. I've actually had to stop updating my formulary book I have received so many.
       My luck ran true to form once again and I began a light temperature. The decision was made to call in the Big Guns... I was getting Levacquin 750 mg for 5 days. As I inwardly gritted my teeth ( remember the tooth incident?) thinking of how exorbitant the cost was going to be. Was I ever wrong... IT WAS WORSE!!! Five tablets cost me $140.23! Do you realize that is $28.05 per tablet. Oh and CVS well they saved me a whopping $38.76..
       I know you'll say well you'll get a $250 rebate from the gov't when you hit the gap. So what! Look how much I have to spend to get out of the gap.
     When things like this happen, I have to wonder is there anyone minding the raises our elected officials get? Is anyone up there controlling the cost of these meds? NOPE. Are they trying to cut physician payouts -forcing us to pay more- YEP. Are they not giving out that cost of living raise? NOPE
Are they helping other countries while we have scores of unemployed? Are they rebuilding other countries while Americans can't afford food?How they in good conscience send billions to help others and not help their own?
     I mentioned to the lovely CSR from CVS who answered my call that I intended to climb back on my soapbox, and let others know what they are doing to their members. I have.
By the way, I also sent a letter to President Barack Obama- wonder if he'll answer...?

Happy Birthday Daddy! I Miss You

2010-07-03T10:00:00.000-07:00

05/15/05Daddy-The Positive foundation

As I’ve grown older, I’ve learned many things. Most of them were instilled in me from my parents. We always remember the good times with fondness, however I recall that the bad ones made us stronger and closer as a family. We had a happy life but each of us kids knew we didn’t dare cross daddy. Retribution was swift and the punishment fit the offense. He wasn’t the type to “beat us” as kids say nowadays, oh no not our daddy. He knew that restriction was the worst thing you could do to a teen or child. I think it was the disappointment on his face that was the real punishment for me. I’d live with the thought that I’d let him down and it ate at me for days.

Memories are like a warm sunny day. We wrap ourselves in them, close our eyes and are transported back to that wonderful time. I can still remember being in a boat in the middle of the river with daddy, fishing and talking. He had me fishing from the age of 3 and our quiet time I remember the best. We would go on to have many quiet times in the future, but fishing together was the beginning of our foundation. I’m talking back in the 1960’s, the early years, and we had a small johnboat, so when it rained we held up an umbrella, laughed and waited for the rain to stop. Now that’s a warm, fuzzy picture I carry with me all the time. I remember a few years’ later mom & dad bought a real boat. When dad & me went fishing and I got tired, he always had life jackets set out like a mini cot in the bow of the boat for me. Even now I fall asleep when I hear the water lapping the sides of a boat. No matter what kind of day I have in a boat, thanks to dad it’s always a great one.

My mother was always the sensitive one, worrying like a mother hen over her children. When I got sick, and they thought I needed to go to the doctor or hospital it was daddywho came to talk to me. I knew it was from the two of them, but this is when I turned to daddy, when there was something medical I needed to talk about. As I got older I would talk to them both, but daddy I remember always holding my hand and calmly talking me through. Mom was the clean up crew. She’d hold me on her lap, rub my arm and calm me until I fell asleep. Another fond memory. One instance in particular, I remember, I had to miss Vacation Bible School because I started coughing up blood. At the time we had no idea what the cause was and wouldn’t find out until many years later. I was lying on the couch; everyone was keeping an eye on the baby of the family! Daddy came up to me, held me and started talking about going to the doctor. He thought it might be appendicitis. Even though I was maybe 5 or 6 he talked to me as if I were an adult and had a say in my care. This is a positive foundation that has stayed with me. He helped me see, calmly that something needed to be done and off we went to the doctor. He knew from my earlier years I had what could be called “white coat syndrome” and did all possible to avoid anyone in the medical field. As long as daddy was there I knew subconsciously I’d be ok. Now that he has so recently left us, I find myself wondering how I’m going to make it through the next procedure. I know in my heart he’s with me, he’s already let me know, but I really miss his presence, his smile, and his positive outlook. I draw on the strengths he instilled in me and the confidence he made sure I had in myself as a person when I feel I need him close.

My teen years were uneventful medically. I decided in the 11th grade I wanted to go into the medical field and started classes to decide which part. I enjoyed working at the hospital helping patients, it was so rewarding. It was in my senior year of school that I took the AFEES test for the armed forces, and signed up for Junior college. I graduated on June 3rd and was in college on the 8th. No need to waste time, I loved school and learning. In August of this same year I spoke to a recruiter. I had accumulated enough college credits and my score was high enough to go into the armed forces as a commissioned officer. Of course it would be the Navy that is the branch daddy was in during WWII. I wanted to go into Intelligence or Air Traffic control. In the late 70’s they didn’t allow females onboard ship, so that was out of the question, even if I decided to be a nurse. The more I considered it, the more appealing Intelligence seemed. I imagined myself in a long trench coat, sunglasses, secretly strolling around Europe. The hit show “Alias” had nothing on me. The show was probably written from my thoughts alone. I remember the day I went in for my entrance physical. As they say, “ It was a day that will live in infamy” My entire world came crumbling down in one simple step.

I made it through the physical until the chest x-ray. A problem was discovered with the pulmonary artery. Since my Afees scores were so high, they were sending me to a cardiologist for verification I could continue on to boot camp. I was concerned, but was taught not to worry unduly on things I can’t change. So I waited to hear the results before I came apart. My mom was with me for the visit. The cardiologist told us it was serious, and wouldn’t know more until a cardiac catheterization was done. Of course, I would not be able to join the Navy or have children. That is the exact way he told me, cold and seemingly uncaring. At 17, my entire world came apart. I was taken back to where my initial physical was done, they told me if there was anyway they could get me out of boot camp they would, but there was no way. So, through the clouds of gloom I walked out, and wondered what in the world I’d do next.

Through the next 13 years my parents were the rock I clung to when life’s obstacles got in the way. It was a time of trial, error, wheelchairs and oxygen, but they were with me through it all. They smiled, encouraged and kept me going. I don’t know how they did it. I never saw them worry, though now I know they did. How could they not, they were told I had a rare disease and probably wouldn’t live to see 20. Daddy always had a smile and a hug and always knew when I needed it most. They watched as I attempted college, moved out on my own, even moved away from the state. They let me experience it all and for that I am so thankful. I know they wanted to shelter me, and protect me from harm, they knew I was dying, but they found the strength to let me live my life no matter what. That is the best thing you can do for your children. Let them have their life, but be there to help pick up the pieces. No advice, no yelling, just positive reinforcement. There were a lot of pieces to pick up. I had the everyday obstacles to overcome as well as the medical ones too. Thank you mom and dad, if I had children I don’t know if I could be half the parents you’ve been.

When the doctor told me I had twelve months to live and needed to go on a transplant list I was living in Ft Lauderdale. My first phone call was to my oldest sister Beverly. I didn’t want to tell mom & dad over the phone and wanted to let someone in the family know for when I drove up to Jacksonville. Shortly after the phone call, she called back. She and another sister Frances were driving down the next day (Friday) to drive me back to Jax. My parents were not to be told I was coming up, they would wonder why I (the gypsy of the family) was not driving myself. They arrived and we had a lighthearted evening overshadowed with what I had to do, and started out the next day. To say we surprised my parents was an understatement. As soon as they saw me they knew I had news.

After the shock we began to plan. They knew my records were sent to University of Pittsburgh for consideration. I had to make arrangements with work, my apartment, etc. I would be moving back home at the age of 29. Not something I thought should happen, I always felt that being the last child they deserved their time alone when I turned 18 and made sure they got it. It was the least I could do for all they did for me over the years. Since daddy was close to retiring, he decided to take early retirement when my call came through and stay with me in Pittsburgh. The hospital recommended that one family member stay through the entire ordeal so the recipient would have someone they could talk to about it later if needed. Looking back on it now, I don’t know how Mom stayed behind and handled it all. She worked, came home and returned numerous phone calls, played receptionist to a constantly ringing phone and worried. She & daddy drove up for the initial surgery, but she flew back home, after I was out of intensive care. How she found the strength to leave amazes me to this day. She is one of the strongest women I know. Daddy had a different job. He watched me fight to make it. When I was in and out of a rejection coma and the doctor told him prayers were all that was keeping me here, he prayed, and stressed whether to tell mom. He decided not to tell her, and wait. His unshakable faith in God saw him through. In three days I was awake and my new lungs were functioning at 100%.

Even though I spent the time in the hospital, I remember the time fondly. The first time I had a bronch and was craving decent food daddy brought me the biggest order of pancakes and sausage I’d ever seen. Each day he brought me an orange-which we shared and some popcorn. During my second lung transplant, both parents stayed with me at transplant housing in Gainesville and the tradition of sharing an orange carried over. Dad would slice it and we’d all watch TV and eat it. The five weeks in Pittsburgh helped me see just how unshakable daddy’s faith really was. He was always positive no matter what and did all he could to make sure I stayed that way too. The nurses put 2 recliners in my room, one for me and one for daddy. Sometimes I think they liked him being there the best. They would laugh when they saw both of us, our feet propped up, sleeping in our chairs with the TV on. When I was released to come home, we decided to drive instead of fly. I was concerned since we were in the middle of flu season and I was immuno-compromised. The doctor said ok so long as we stopped regularly and I walked. They didn’t want any blood clots forming from inactivity. Mom flew up and it was like one of our vacations we took together all over again. Except with the extra stops for walking.

The next 8 years passed quickly. I had as much of a normal life as a transplant recipient can. Trips to UPMC, took early out from the airline, moved to Orlando to be on the opening team of Disney Cruise Line, things were moving right along. Unfortunately so was chronic rejection. I noticed I was having trouble walking and talking at the same time, a warning sign. What followed was a nightmare. The last thing a recipient wants to hear is those two little words –chronic rejection. It feels like a death sentence all over again. The wind is crushed from your sail in seconds. I had to plan again, and tell my parents again. I’d bought a house in Lakeland, so the next 3 years I remember vividly. Not so nice, but I held onto the positive foundation from daddy and read the book of Job a lot during this time. Bell South loved my long distance calls to my parents. I called just to hear their voice and lift me up. I needed to piggy back my emotions from them to keep me positive. They obliged and even made many trips to see me.

Much of this time they didn’t see what I had to endure to survive. I felt I’d hurt them enough and tried to keep as much of the horror as possible from them. I’d tell them about it after everything was ok. I endured iv’s, hospital visits, still trying to work full-time and go to college full-time as well as a pulmonary rehabilitation exercise program. I lost 60 pounds through it all, was diagnosed as steroid induced diabetic and wondered if I’d make it to another transplant. It was at this time I was listed with Gainesville. No other center wanted to do another transplant for me. This was the emotional chasm that almost destroyed me. Hearing all these centers tell me no, when they are supposed to save lives. My thesis in college reflected all my anger during this time and was directed to these centers. This was the only way I knew to release the negative emotion building up inside me. Shands at Gainesville restored my faith in the medical field and gave me a comfort zone stronger than any other hospital I’d been to.

I finally had to call my parents when I was rushed to the hospital and the doctor told me I needed to decide on whether to go on a respirator or die comfortably on morphine. I didn’t think it was that bad, but then again I wasn’t at Shands either. Mom and daddy were volunteering at the Lions Club making a spaghetti dinner, so I called a sister and asked if she’d let them know I needed to talk to them. The next day my room was filled with family. I needed to know they were all right with my decision, after so many years of fighting the thought of dying comfortably was so appealing. However, I couldn’t let daddy down. I heard him mention to mom that he still saw a spark of the fighter in me, and knew they were holding out for a miracle. I decided to go for the respirator, was moved to ICU and waited through the night. His miracle happened, I didn’t need the respirator and was sent home 2 days later. I immediately made a trip to Shands to discuss what I needed to put in an advanced directive. That night at 3:00 am they got another miracle. We were home and my call came through. We drove back to Gainesville and I got my single left lung transplant.

It was about seven months after this that dad began to show signs of Alzheimer’s. The thought that this man, who has given so much, should have to endure this was unthinkable. I’ve always called him “Mr. Volunteer” and credit my helping others like I do from watching him all my life. We watched him deteriorate for two years; it was so rapid we barely had time to adjust. It hit my mother the hardest. She had to watch each day as he struggled to walk, form sentences and the final days in the nursing home. She just couldn’t lift him anymore, being a small petite woman herself. I still saw the daddy I’ve always known. Living my life disabled taught me a lot, the first was that daddy was still a person and would be treated as such. It was my turn to give something back to him on my visits. I called regularly to keep mom upbeat, but the visits were for dad. In the last 6 months of his life, I had a few obstacles of my own. I was treated for rejection and was waiting for a kidney transplant, hoping for living donor. I was told the wait could be five years.

I couldn’t talk to dad about all this anymore, so I drew on what he’d given me all these years. I didn’t want to burden mom, she was under enough pressure. I did want her to know that I understood, and they were here with me even if not physically. I visited them for a week, what was to be my last precious moments with daddy. After I got home, two days later I got a call from the kidney transplant program, they had a kidney for me! I couldn’t believe it, it was only six months of waiting. I called mom, hoping she could find time to let everyone know. I got out of the hospital one week later on Thursday and daddy went in on that Friday. From the hospital he went to a nursing home. I got daily reports from my sisters and stressed if I’d be able to see him again. I was so freshly out of a transplant I couldn’t go visit him in a nursing home yet. I finally got the ok at 3 weeks out with a few restrictions and we drove up. We got there late Wednesday and he passed away 12 AM on Friday June 3,2005. I got to see him, but he was semi-comatose so I’ll never know if he knew I was there. I know I was and I still drew strength from the man that is my daddy.

I had to leave early on Friday for an appointment a shands. My kidney wasn’t functioning they way they hoped and they wanted to admit me. It was then that the loss of daddy hit me. He wasn’t here to tell me, it was going to be ok. If I were admitted how would I go to his funeral and say goodbye? The loss was so great I cannot describe it. I had to be strong so mom wouldn’t hear all this over the phone. I was also scared to death of having a kidney biopsy and the thought was more than I could endure. Mom knew this too. At the last minute, they discovered they couldn’t do the biopsy and I could go home. I called mom and we both said at the same time “thanks dad”, he was still watching out for me.

Even though my daddy has only been gone a little more than a week, I’ve learned that the best tribute I can give to this man for all he’s taught me is to keep him forever in my heart. When something bad happens I touch my heart and remember him, his strengths and when something good happens I touch my heart and say “thank you daddy”. I have a large jar of "pennies from heaven" too, and know that silver lining behind the clouds is Daddy telling me he's still there watching over me.

I miss him and need him more with each passing year.

I am posting this today July 3,2010 because today my daddy would have been 85 years old. We now believe it was not Alzheimers.

Through a breaking heart and tear filled eyes this is for the most wonderful daddy in the world.
I love you daddy... Happy Birthday..

Lifes little inconsistencies

2010-06-16T13:45:00.000-07:00

I've pondered a few different topics to post, and after this afternoon this seemed the craziest one -so here I go.
My pharmacy had put in for me to receive the Levemir insulin pen since I am currently covered in lovely shades of black & blue. (If they grew together I might have a nice tan eventually). This and two other facts:
1. I seem to have a terrible cas of "dropsy" when I hold the insulin bottle. My pharmacist is great with "just come on up and I'll have you another bottle ready". He seems to know my panic voice, each time.
2. I'm running out of places to inject that long needle (to me anyway) syringe. "Count to ten & push" Wait "Let's try fifteen"
Sunday I hit a bit of muscle and bled-plus the pain and itch were no fun either.

Well, he got the approval for the pens so I went to pick them up.It seems though my doctor forgot to order a prescription for the needles. So I had to return today.
Now here's the tricky part... My Part D provider approved the pens BUT not the needles.
Ok so how do they expect me to take insulin? Drink it?
I paid for the needles, not wanting to make another trip and left. I've tried the auto-refill and kept getting email notifications every other day for different prescriptions. Auto refill does not work for someone like me with so many Rx's and dropped off at different times.

I called my Part D Provider and the nice young lady couldn't understand why either. She kept naming of syringes they covered but no needles. I calmly stated those were syringes not the needles, do you know the difference? She suggested that Medicare Part B covered the needles as they were diabetic supplies. I replied no, their idea of supplies is a glucometer and test strips.
I asked why they would give me insulin pens and no needles? not sure.

Well, after 25 minutes on and off hold it was discovered that they do not cover the "nano" smallest and most comfortable pen needle on the market.

To make a long story short: When it is not them doing the daily injections-comfort and bruises do not matter.

Shooting Stars Mag: Crystal Allure Giveaway: Transplant Awareness

2010-06-09T08:19:00.000-07:00

Check out this link for a chance to win a Transplant Awareness Bracelet!

Shooting Stars Mag: Crystal Allure Giveaway: Transplant Awareness

Awareness Ribbon Earrings Sterling SIlver Organ Donation : GemsCrystalsAndWire - ArtFire Jewelry

2010-06-04T03:59:00.000-07:00

Awareness Ribbon Earrings Sterling SIlver Organ Donation : GemsCrystalsAndWire - ArtFire Jewelry

Sterling Silver earring posts attached to sterling silver awareness ribbons..
Delicately dangling Swarovski crystals in emerald green, to promote organ donation/transplantation.

I can recreate these earrings in the awareness of your choice.

Chronic Rejection

2010-05-27T09:29:00.000-07:00

        For some reason unknown to me, this topic has been on my mind lately. I certainly hope it is not a harbinger of the doom to come. I can honestly say I have endured chronic rejection with my first double lung transplant, and have NO desire to be tested in this way again. I decided to do a quick search on the topic, with respect to lungs, and found numerous medical updates on the net, literally filled with doom and gloom.
Clinical aspects aside, not one touched on what a patient actually feels at this time in their life.
       Chronic rejection in a lung transplant feels like a death sentence-mentally, physically and yes emotionally. Many times I described it just like that.. Before I actually knew the true meaning of those words. I can still vividly remember the day I was told. I was at work when the call came in. Thankfully, someone saw my expression and stood behind my chair. If not there would have been the sight of me & the chair gliding across the room.. I fell into my chair speechless, mind totally blank unable to process the words. What now? I knew I was short of breath, but this? The feeling is similar to being first diagnosed. That helpless feeling of not knowing what to do. Knowing in my subconscious what was about to happen in my future-or lack of.
          To be totally honest, I was woefully unprepared for the next few years of my life. Internet searches tell of the morbidity rate in chronic lung transplant rejection, so this was something else to add to my thoughts. At 40 years old, one rarely thinks of "final arrangements". This I had to do because it was the last thing I wanted my parents to worry about afterwards. They had watched me struggle and survive enough. I made plans for a month long visit to UPMC for treatment and a re-eval for possibly listing for another transplant. To say the least, chronic rejection treatments back then left alot to be desired. I remember having a death grip on the bed rails, screaming with pain in my knees, while the wonderful nurses ran for something to knock me out. And then just when we thought I'd crossed the hurdle- the serum sickness started... Oh what a joy... I'll leave that descruption to your imagination. Believe me, it was not pretty. I finally left UPMC in a wheelchair, my legs too weak due to the knew pain. I was also denied a relist, due to kidney function.
           I geared up to find a center who would consider me for a relist along with all the other issues I was tackling. I found one. A wonderful center, and I still go there today. UF is MY comfort zone. Back to the story. My knees were so weak, if I sat on the floor-forget getting up. I had to crawl to a chair and using my arms lift myself up into the chair, in order to eventually stand. I actually got stuck in the bath tub...alone.. until I figured a way to gt myself out. It's funny now, but believe me, not when you're freezing and pruning at the same time. I fell in the balcony to my apartment and couldn't get up. I waited until someone came home from work, sunburnt and almost out of oxygen before I could get help. Sweeping floors was an all day affair, for one room only. I had a bar stool and my broom. I'd sweep 2 tiles and sit to catch my breath. Move the chair, sweep...you get the picture. Literally an all day affair. I had lost so much weight trying to breathe, a light wind almost blew me over. Thank goodness Mom was there at the time to catch me.

        I would sit outside each morning watching the sunrise, drinking my cup of coffee and wonder how many of those beautiful scenes I'd enjoy. I told everyone that God was whispering through the palm trees, it wasn't the wind blowing. I reveled in all the scenes I could. This is what kept me going mentally.
        UF kept me going physically. I had an exercise program that would make an olympian jealous. Well, you get the idea. I went to rehab 3 days a week, had (still have) a multi station gym and treadmill at home. On weekends I would walk the mall. I knew exactly where each bench was to sit down and catch my breath. Every clinic vist, every three months my physical progress was checked. I had to be able to leg press 80% of my body weight. When I finished I was actually lifting 10 pounds more than my body weight.
Psychologically, I was told to stop doing my spirometry at home. Watching those numbers drop daily is so defeating. I already knew what was happening. This was showing me the undeniable proof. Thanks to the transplant team at UF I've learned that if I can exercise when I'm dying and on oxygen, I can do it when I'm not.
        I remember many times wondering why I ever had the first transplant at all. Surely my original symptoms were nothing like this. But those thoughts have to be stopped. My original disease had not progressed that far, soI couldn't realistically say this. Plus, I had enjoyed 9 years of life that I would never have had. I competed in the 1994 US Transplant Games, hiked El Yunque in Puerto Rico, and so many other wonderful things I would have only imagined if I had not taken the chance on a lung transplant. I went back to work, attained goals and dreams all through lung transplantation. I remember saying after my first transplant that I'd never have a second. How wrong I was. I would not trade one part of my life to go back and change my mind.Good, bad, ugly, or otherwise.
         My biggest fear is that I will once again hear those life altering words: You have chronic rejection.
I know the outcome, but would rather spend my time not thinking about it and living my life.
To my friends facing chronic rejection: I feel your pain, I remember the emotions. I'm here for you.
And I'm praying for you to desperately get the chance. I'm also promoting organ donation and research to help us all.

The Blessing of Mini-me's

2010-05-20T09:33:00.000-07:00

       I had to replace the batteries in my spirometer this morning, and decided to stop for lunch on the way home. While sitting at the table quietly eating my roast beef sandwich, I noticed a family sitting to my left.
Their daughter was this adorable little cherub with blonde ringlets for hair. She was very involved with Mom, but dad and grandpa (I think) were totally immersed in eating. All at once this little cherub began to cry and grab her eyes, saying they hurt. My guess is she has an eye issue as Mom started searching for eye drops and trying to calm her down.
       This is when I began to become a little irate with the father. Instead of talking to his daughter and soothing her worries he continued to eat! And he was the one sitting next to her. Mom got the eye drops and ushered mini-me into the ladies room to put them in, while Dad watched her leave and proceeded to grab the little ones fries and eat them! What a louse! Actually I was thinking much worse but that's the nicest name I could think of for the moment. Mom & daughter returned and once again the little one was smiling and chatting away. The only words I heard dad say were " you better eat your food". No smile. No show of affection at all for this little adorable creature.
       This has become the basis of today's blog.
Do people truly realize what an unbelieveable blessing it is to have this miniature carbon copy of themselves?
Or is it just people like me, who never had that chance?
Do people realize what they've been given?
       I was told when I was 17 that I could never have children. Not only would it be fatal for me, there was a 90% chance of the child being brain dead due to my lack of oxygen. Basically this has been a no brainer for me all my life, but that does not negate the emotional nor the mental impact of watching a carbon copy of yourself grow and succeed. Or for me the lack of.
      I had a tubaligation at 18. The next part you'll read I have never discussed since the fatal day it happened.Twelve years later, while on the transplant list waiting for my first life saving/altering lung transplant we discovered that tubal failed. I was 5 weeks pregnant. I was on oxygen. I was living on 45% room air. I knew what had to be done, and I signed the papers, went into the hospital and it was done. Many may think me cold in this regard, but when you've lived most of your life being told this is how it is, that is just what you do. Another tubal was performed, but this time I sternly told the doctor: "You make sure this does not happen again, I will not endure this again physically but most of all emotionally and mentally!" One time was enough for me. Also while this was happening, another choice had to be made. Whether to have a wedding or a honeymoon. The wedding happened on a Saturday evening and on Monday morning I was admitted into the hospital. So, there was one day for a honeymoon.
        Does my decision haunt me? Yes, sometimes it does. During heated arguments it was always thrown in my face that I never talked about it, just did it. Honestly there was nothing to talk about. If I did, it would have made it more difficult to do what had to be done. I could never be so selfish as to risk a childs life like that. In my opinion there are way too many out there no one wants, who I could love just as much if not more than a biological child. My doctor placed us on a list for a newborn adoption. Well, the day he called to tell me the good news that he had a pregnant mom who wanted to give us her baby, I had to tell him that I had been single for a week.. Once again... no child for me.
      I was in my early thirties when it hit me, "Wow a parent is responsible for molding a childs personality, attitude, and goals." This hit me like an epiphany. I realized the impact a parent has. If it took me this long to realize it, how many others much younger wished it hit them sooner? I fully realize it's tough for parents in todays world. You have to be ever vigilant. But, I also know when both parents work together, nothing is impossible. I see it everyday with my nieces and the time both parents take with the kids. They should be honored for all both of them do. I am so proud they are MY family! I see well-mannered and well- adjusted kids. Yeah they're sometimes a hand full-but look at the gene pool they came from! LOL
    So my words for today..... Hugs those Mini-me's until they cry for air! Tell them constantly you love them..and be ever vigilant in keeping them straight. There are those of us out there who wish we were in your shoes for a day!

Whew!

2010-05-11T06:42:00.000-07:00

I decided I have so many things going on in my little brain I need to download a few.
Mothers Day:
Well, it turned out pretty good. Since I have no children of the human variety, my 3 wonderful, furry, four-legged boys planned to make my day special. They each had taken on chores that normally I would be doing...

DB (DragonBeast-Ding Bat) decided he would do the dishes all day... Coming from a dog that tries to hide under the cushions to escape a bath, this was a big decision for him.

CC (Captain Chaos) had the chore of making the bed. Considering the fact he Is a Toy Fox Terrier, this was a major undertaking.

While Oz, dear "fruitcake" Oz, well his chore was to keep the floors swept. Since he is the one dragging all manner of items in from outside I guess this chore ws only fitting. However, Oz has a terrible scratch-turned-cut-turned gash on his right paw so he was excused from duty. Much to the chagrin of the other two I might add.

The day turned out nice so we went for motorcycle ride along the gulf coast. Decided to stop at Pop's Sunset Grill and have lunch sitting on the Intercoastal waterway. The beaches and Gulf were packed. Mooch (our resident dolphin) stood no chance of playing today, too many boats. After a quick lunch of scallops, shrimp & Grouper (did I mention I love seafood) we rode along Casey Key.

I spent the late afternoon taking photos of a few pieces I'd recently created so I could do my usual -edit, crop, yada,yada before they hit the net. I was having no luck whatsoever inside so decided to take my endeavors outside for a more natural light. It was at this point I was completely engrossed in taking a good photo when I heard the alarm sound! Oz is the resident alarm. If you ever hear him bark you'll know what I mean. I looked down, which I normally don't do, and sitting poised to strike at my right foot was a snake! not a black one (they're friendly and keep rats away) but a brownish color one. I gasped, CC (the resident protector) grabbed the snake in his mouth and started to shake it. I screamed! Now my concern is for my boy, what if this snake is poisonous and bites him. My boys would chase down an alligator thinking what fun to chase such a big lizard! CC drops the snake at my scream, which proceeds to slither under a plant pot.

We all go running in the house. The snake still has not been found. He either got scared to death (just like us) or went to visit the neighbor.

Well, Monday Oz went to the vet and now has a large bandage on his leg. Poor fella, it's driving him bonkers. He has antibiotics he takes twice a day, DB has heart meds & Lasix he takes daily. Pretty soon I'll need to have a pill minder for my boys just like the ones I have for me.

Cinco de Mayo-God Bless Susie

2010-05-06T13:57:00.000-07:00

Yes I know I'm a day late. I have a great excuse believe me. I was celebrating the wonders of organ donation and how one person can change a life.
It was on May 3, 2005, that my Donor Dad, Ron Paxton had to make the most heart-wrenching decision of his life. He chose to remove his lovely and only daughter Susie from life support and donate her organs.
     May 3rd was also her birthday.....
I received one of Susie's kidneys on May 5th. 05-05-05 to be exact. While I celebrate one of the best days of my life, my Donor Dad is quietly grieving over the loss of his loving daughter. Through letters and phone calls, we have discovered Susie & me had many parallels in our lives.
       We were six months apart in age.
        We both had serious heart problems as infants-Susies' was found early -mine was not. Regrettably during surgery the heart lung machine malfunctioned and she remained "Daddy's Little Girl" her entire life.
       Susie's Mother had lung issues that would have required a lung transplant had she chosen to.-I've had 2 lung transplants.
        Susie was an athlete and ran in the Special Olympics- I competed in Track & Field at the U.S. Transplant Games.

It is said, When God closes a door -He opens a window.
        Donor Dad lost his little girl May 3rd
        I lost my Daddy on June 3rd and his birthday would have been July 3rd
I still miss my daddy every second of the day, but through the miracle of organ transplantation I am Blessed with one great Donor Dad.

Susie will forever be honored with the pendant I designed above. The "sisters" cameo is designed in the pocketbook style of wrapping, and the Swarovski crystals are in our birthstones. The left side is one emerald for Susie, while the right side holds one rose as well as one emerald crystal signifying what she gave to me.

I worry over my Donor Dad each year on the 3rd of May and say a few extra prayers for him and Susie.
I celebrate her life and the life the two of them gave me on the 5th of May.

Happy Cinco de Mayo everyone!!

Dreaded Dentist

2010-04-28T11:12:00.000-07:00

Well I finally decided I better update the dental issue.. MY pocketbook is going to be in serious recovery mode.. It appears my tooth is cracked completely down the center.. UGH.. And as if that weren't enough the back moves independently from the front.. So it's loose..
The dentist gave me these options:
1. If he can remove the back without hitting the nerve or root, he can then do a root canal and cap the tooth.
2. If the tooth brings the root with it, I can have the teeth on either side prepped for a bridge.. Ruin 2 more teeth?
3. As in no. 2 I can opt for an implant.
Me, an implant?? never thought it would be a tooth???

Well the worst case scenario came topass. The dentist got the back piece off, and holding on for dear life was the root. The tooth had to be completely removed. If only the 2nd piece would have come out as easily as the first.
It took another hour to get the other half of my tooth out! it also took 8-10 stitches to close the gap.
Have you ever tried to tell a dentist that the stitching thread was tickling your nose it was so long-AND try not to move? I mean this man has a needle going for my gum..

I believe we are settling on the implant as he hates to ruin 2 other perfectly healthy teeth.
It will take about 8-10 months to complete, all of which I will be missing a much needed tooth.

At least maybe this way I can save a little of the $2900 I'll need for this little work of art..

All-nighter

2010-04-21T00:54:00.000-07:00

     Well I finally decided to get up after a long-long-sleepless night. My dilemma is due to a wonderful antibiotic called Levacquin. Levacquin is one of those "upper end" antibiotics, you know the kind. Designed to knock anything, and I mean anything out of you. I took only one, and trust me that is all anyone needs.
I was prepping for that dreaded dental work I have to endure later this morning..
      I realized yesterday evening the pain in my back was also one of those lovely side effects, which would have provided a great excuse from housework. Sweeping the floors was utterly a chore this time. Upon my realizing this, I began hoping and praying the excruciating headache would not appear. Wrong. It did appear, just as I was falling asleep, and has lasted me through the night. You know the type. If only I could get my head in one comfortable position long enough to fall asleep, kind of headache. Well tonight there was no comfortable position, because along with the headache, a distant cousin the stiff neck also came along for the journey. I remember when I had to take Levacquin for almost a year, wondering when all the side effects would just go away...Far..Far...away. At one point I remember thinking (so sleep deprived), "Am I really awake, or dreaming I'm awake?" Either way I was so tired it really did'nt matter.
      So, after wondering; Could my blood sugar be making my insides feel all goofy?, or Can it all be this darling little pill? I decided enough was enough, a body can only be uncomfortable for so long. I got up. So here I sit, straight as can be, not moving my head. It hurts less when upright, so the rest of the night it will be so.
       Thankfully blood sugar is fine, so it must be the Levacquin. Darn. I am typing this as my coffee pot brews that wonderful life saving blood I so need today. Hopefully, even half-caff along with a Tylenol (yes I checked my temperature first) will alleviate this feeling that my head has been pile driven onto the cement a few too many times. On a more positive note: Maybe I can fall asleep in the dentists chair and not remember a thing... Here's hoping..

I was hacked!

2010-04-19T05:59:00.000-07:00

It appears someone is having fun attemtping to hack into many of my accounts.
So far I've had to change innumerable passwords. Being on Prednisone and so many things going on at once I have trouble remembering them in the first place.

I received a mesage from Facebook that someone from Canada was trying to log into my account with a smart phone- Not so smart.
Now issues with Google and my blogs... Not to mention a few other places.

I guess some just have nothing better to do or nothing interesting in their lives..
well, hopefully all will calm down now.

I have been lax in posting also due to attempting to promote my business and other blog. But mainly due to severe-(and I mean severe) allergies as well as cracking a tooth which now need major repair...
Lovely---I hate going to the dentist... Transplant-no problem, Dentist-dread like the plague.

National Organ Donor Awareness Month

2010-04-08T01:35:00.000-07:00

April is our month. Our nationally recognized month to promote organ donation/transplantation. Our one time to go above and beyond to make sure those who are still "waiting and dying" for a life saving organ get the chance we've had. Or in my case the "many chances" I've had.
       I recently posted this on my Facebook page, Bette Luksha-Gammell wants to know. If you could go back to a crossroad in your life, would you go or would you take the same path knowing the outcome?
I posted this mainly to see what the responses would be. As I suspected the replying comments were from friends in the transplant community. We all, candidates & recipients have a common mental bond with this question. We seem to immediately apply questions such as this to the desicions we made on our health. The meaning in effect is that transplantation is our life. Our one true goal is to live. Not just to survive, but to Live.
        Along with this goal is the obligation to spread the word about organ donation. We must give back. Someone was spreading the word while we lay too sick to do so. They helped us to survive long enough to Live. Now, we must all join the fight to make sure those waiting get their chance at Life as well.
It is necessary to dispel the negative rumors still in circualtion regarding organ donation.
       As I write this, the current total for those waiting has hit 106,886!
The total number of transplants in January 2010 was a mere 2,198. Is it any wonder so many "die waiting"?
I could have been in this category three times. Yet, I was Blessed with a perfect match each and every time. Like many of you, transplantation changed my thought processes, my ideals and goals. At the age of 31 I could actually dream of a future. I got this wonderful spring in my step, this joy for life. The simple things that meant so much before, well their meaning has reached astronomical proportions. Facing death, a person learns what is important and to never take anything or anyone for granted.
Live like you were dying. We know the true depth of this statement. Enjoy and cherish each and every memory -good, bad and otherwise. For you might not have been here to even endure them.


      But most importantly-GIVE BACK. PAY IT FORWARD.. Give someone the chance to experience all the obstacles this life has to offer. Promote organ donation/transplantation. Sign an organ donor card and tell your family. One day you may wake to find a loved one needs that life saving donation. Please don't wait until that time to sign that card. Do it now... You won't regret it.

Share your life....... Share your decision.... Recycle yourself......

You never know where your Gift of Life may come from

2010-04-04T06:54:00.000-07:00

http://abcnews.go.com/GMA/supermarket-customer-donates-kidney-favorite-cashier/story?id=10278738

This link takes you to the most wonderful story. What an Easter surprise to hear of such unslefish giving this morning... Another life saved through organ donation..

Busy days can turn blue.

2010-03-19T12:58:00.000-07:00

Upon waking this morning I realized it was going to be a busy day. I took my three boys for a quick walk, being ever mindful of little DB. DB is my little Toy Fox Terrier with a huge Alpha complex.
Our veterinarian has been treating DB for a severe heart problem for a few months, and it was time for his yearly physical and shots.
    We've already increased the Lasix to twice a day if needed, but definitely once a day at least. Well, to say the least DB felt like Top Dog being able to go for a ride alone, without his brothers hogging windows and seats. He normally loves our veterinarian Dr. Ebert. Today was no different, he accepted his shots like a trouper, but decided he wanted no part of the nail clipping.
      After DB was brought back in the room with me, he hid under the chair.. As usual his limit had been met.
Dr. Ebert came in to tell me his labs were good and he was ok to go home. His parting comment broke my heart. "His heart sounds horrible."
     Four words-one small sentence, and my world comes crashing in. I've mentioned that through his initial diagnosis and meds, I began remembering my "old" health issues too. I remember running to find a bathroom when the Lasix kicked in. so I can only imagine a small 10 lb. dog on 20mg of Lasix.. We all hate to face the fact of a possible loss in our lives, more so when it's a Beloved pet. But DB is no ordinary pet.. He is the most Independently dependent canine I have ever had the pleasure to share a home with.
He must be on your lap if you sit down, under a blanket to stay warm. Then he is in total doggy heaven.
As I write this he has tucked himself under my sweatshirt to get close and warm. And snoring.
When DB is held, he puts his head on your shoulder and you feel the love and warmth all this little animal has to give. He is without a doubt -my best friend. Not mans'-mine.
      DB has offered me comfort through chronic rejection with my first lung transplant, my second single lung transplant, neighbors poisoning his mate (an Airdale Terrier), losing his friend Maggie (Shih Tzu) to cancer, a kidney transplant, a pacemaker, and the list goes on.
     I will take the best possible care of my little Alpha Dog. He has already earned his wings, but I want to keep him firmly planted on earth as long as possible.

Go Gators

2010-03-15T09:50:00.000-07:00

Now I don't mean the Florida Gators at University of Florida. I mean the Florida Gators as in alligators.
For the last few weeks on my morning walks I've seen a family of turtles (4-5) sunning the bank at a small pond on the Sumter Greenway. They always manage to duck back into the water before I can snap a picture.
This morning was a little different. As we started out and rounded the corner from my street onto Sumter, I again greeted the turtles but slowly floating in this small pond was a small alligator. It was no more than 3-3.5 feet in length. I quickly grabbed my phone to snap a photo, but alas having had my Blackberry only 2 days I took longer than he wanted me to. He slid to the bottom. Hopefully, NOT to jump out and attempt to grab one of my boys. Then it would be a fight to the death. No one messes with my boys.
    We continued on our walk so the turtles could come back out and have a peaceful afternoon. At the next drainage pond, I looked in the distance searching for the 4 footer that usually basks on this bank. He was there. Suddenly I heard a loud splash close by-signalling possibly another gator in the area. Seeing nothing I went back in an attempt to zoom in on the other gator in the distance for a photo. I took a few and as I was leaving glanced down to the drain opening and there it was. The other gator that made the splash. Nose pointing at me, definitely warning me to stay out of his pond. I snapped a few quick photos, tightened the boys leashes and we finished on our walk.
      Nature makes my morning walks much more enjoyable to trudging on the treadmill. My dogs chasing everything makes the walk interesting. I've been concerned that our little area might find it difficult recovering the unusual cold winter we've had. Thousands of fish were killed and had to be removed from our waterways due to the 10 days of continual freezing lows. Our yard is normaly filled with lizards of every kind and variety, but none so far... disappointing indeed. My giant rain frog who is renting space in my rain barrel is still alive, but I think his wife has gone to a warmer climate.
    These walks as well as all my little creatures make my day easier. It's a calming way to face the day with no stress. Release those endorphins and take a short walk-or just sit outside and enjoy nature. The effects can be amazing..

P.S... I am a UF Gator too... Born that way-and thanks to the great people at Shands reborn that way.

Disappointing editorial in todays paper

2010-03-02T04:49:00.000-08:00

I read the following editorial with increasing dismay this morning.
apparently all those promises of NO CUTS TO MEDICARE we were
promised were once again false campaign/ presidential promises.

While this may not affect many of you in other states, it has a huge impact on Florida.
Many retirees have chosen to make Floridas warmer climates their homes in later years.
With these cuts those reitrees who are not in perfect health and the disabled all which are
ineligible for a Medicare Supplement will be hit hardest.

Once again, those who can least afford it, will be the ones to be made to pay and struggle.
I have been in situations where I had to juggle finances to achieve the unthinkable.
Pulling my hair out, and wringing my hands in total despair was not my idea of fun.
Why should the disabled, organ transplant recipients, and seniors who have been denied a Medicare supplement once again be forced to choose between life and health care, prescriptions, etc.
And why, can someone tell me, why should a physician have to feel the brunt of watching their patients suffer due to financial difficulties and Medicare cuts?

More Medicare pressure

I have been a practicing internist in Venice for 10 years. I am writing concerning Medicare cuts in physician reimbursement, not to make readers feel sorry for doctors, but to let people know how these cuts will affect them.

Physician payments through Medicare are based on a formula called the sustainable growth rate. This has resulted in yearly cuts in physician reimbursements, which have been delayed by last-minute acts of Congress. These fixes, for the most part, have resulted in fees remaining the same while expenses continue to rise. This year, Congress put a two-month patch on the problem. It expired March 1 and physician reimbursement was cut by 21.6 percent.

What will happen as a result? Physicians will drop out of the Medicare program en masse or, if they're able, they will retire. Many will go out of business. Florida physicians will leave for areas with fewer Medicare patients, resulting in Medicare patients losing their doctors or paying them out of pocket. The doctors who remain will cut costs by cutting staff and services such as after-hours care. This will result in further pressure on emergency rooms. Doctors will also begin charging patients for things such as phone calls, prescription refills, etc.

Readers, tell your congressmen to fix the problem. If not, you'll have other chances, because reimbursement is supposed to be cut further to a total of 47 percent by 2012. But, by that time, there may not be any physicians left.

Eric Lough, M.D.
Nokomis, FL

It's Monday

2010-03-01T05:57:00.000-08:00

I should have known this morning was going to start out wrong when I looked out the window last night and commented on the gorgeous full moon.
   While retrieving a fork from the dish drainer (Yes I hand wash my dishes) a glass bowl fell. I didn't realize until today how heavy glass can shatter into a million -yes million shards of tiny red glass.
Broken glass managed to make it into 4 rooms of the house. Ozzi hit the pet door -planning never to return and the other 2 boys shrunk back under the blankets where they were sleeping. As I was just finishing sweeping this cute little black nose peeked through the pet door-yes Oz it's ok to come back in. He hates loud noises..
    For the walk... DB is annoyed because his leader leash broke yesterday and doesn't retract all the way inside the casing. I literally had to carry him 2 blocks and will probably again for todays walk. He's only 10 lbs and a toy fox terrier, so anything dragging is an anoyance.
    I tried sending a msg via text on my phone and ATT is refusing text and wants to charge me multimedia- so a visit to the local store is on my list today. My honey do list is getting larger by the second.

What more is there to say? It's Monday... But the bright side is I get one hour of awesome TV with 24!

Please vote

2010-02-25T04:51:00.000-08:00

Year of the River City-wide Photography Contest Jacksonville.com#SD#SD

Please go to this link and vote for the photo "Rosy LazyRiver" it was taken by a very dear friend and heart transplant recipient Lon Bullman.
I think it's the greatest photo on the list..

Thanks to all.

LabCorp continued

2010-02-22T12:03:00.000-08:00

I've left a few online requests at LabCorp.com for someone to please contact me because I need to have an issue resolved... Nothing in a week.
Guess they don't respond via email either.

Anyway, since I am taking the Multaq I've reduced my Prograf from 3mg twice a day to 2 mg twice a day.
Might save a little money-until I find out how much the Multaq will cost me.
I still feel my heart race for 10-15 seconds at a time, so I'll have to wait and see if it's really going to help me or not.
I have discovered that an elevated blood sugar will wreak havoc with my body along with the heart. So another reason for everyone to keep your blood sugar in control..
It took about 3 days to feel like really getting back to exercising after starting to take the Multaq, but now I'm bakc to my 2 miles in the morning with the boys, plus hitting the treadmill for another 30 minutes after dinner.
Next I hit the gym again.

Develop a photography program for children at transplant centers. | Pepsi Refresh Everything

2010-02-19T05:31:00.000-08:00

Develop a photography program for children at transplant centers. Pepsi Refresh Everything

Please view this short video and vote. This would give much needed funds in helping organ transplant recipients while they wait for LIFE.

LabCorp-Monthly lab visits

2010-02-16T14:08:00.000-08:00

Many can relate to the monthly bloodwork we have done to maintain our immunosuppressive levels.
Well I've had to try and calm down after my visit on Monday to LabCorp.
I always go online to make an appointment, since we my labs must be done on Mondays and a purple top
tube FedEx'd to shands. The labs here are always packed on Mondays and Tuesdays, especially during season, the reason for my appointment.
Was I glad I did! The place was mobbed.To my dismay there were all new technicians, and the lady at the front desk was clueless. If I didn't know better I swear she's probably pulled her hair out by now after all she handled. I was concerned since I have one good vein left and only one person I know can find it the first time.
   Well I got there at 8:05 for an 8:15 AM appointment and signed in. The receptionist made so many copies of my lab paperwork I cringed at the thought of the loss of a rainforest. And she gave me 3 copies back of the same piece of paper.! I finally got in the lab, the tech. looked at the paperwork with a strange look. I immediately thought, "here I go again" having to explain in detail what the paperwork says and that I take a tube with me for Fed Ex. The tech looked at me and said, "But we do this test here." "Well, maybe but you do if differently than my transplant center." I pointed out that the second piece of paperwork stated I would take a purple top tube with me. She responded that she had to call her supervisor. "I want to speak with her when you get her on the phone, and I have to get on the road to another appointment."   She got the supervisor "Nan" on the phone, who asked me if I was having other bloodwork done. When I replied yes, she said well then I'll allow it.. YOU'LL allow it? I've been doing this same procedure for the last 8 years.
     The issue was that if the Tacrolimus was the only blood draw I was having she was going to refuse. Labcorp would get no money for drawing the blood. No mattter what my paperwork said.
I asked what happens if my levels are off and I need to get the Tacrolimus re-tested in a week? No answer..
In talking with the tech she mentioned that Lab Corp regularly moves their techs areound so they don't get too comfortable with the patients. I advised her that this is inadequate patient care. The regular techs would have seen my appointment and if there were any issues it would have been handled before I even got there.

   I finally got out of there at 8:55. A quick appointment which should have been easy took 50 minutes!
I was also given a phone number for this Nan and advised to have her fax me an approval letter for the next visit... Yeah right.... Nan has not answered her phone since yesterday nor has an answering machine.

At this point I've renamed LabCorp to LabCrap.

The heart will have its way...

2010-02-11T15:07:00.000-08:00

     I realized that I forgot to update my blog as to my heart rate issue and the heart monitor.
Well to make a long story short I went to the Cardiologist, he wasn't there, so I asked the pacemaker nurse
why I needed a heart monitor since I had a pacemaker recording every beat my heart makes?
The response I received was that a heart monitor records everything in real time.. Doesn't the pacemaker?
Well, yes. I then asked that since this only happens about once a month, and I just had my monthly occurrence what would the monitor record? Nothing was the answer.. So she ran a copy of my pacemaker and I came home.
   Wednesday morning I received a phone call from the office and the doctor wanted me to come in earlier and speak with him... Uh oh..in trouble now...:(
     I recently went to the doctor and we had a nice chat about my options. I now have Atrial Fibrilation where I had a type of Ventricular Tachycardia before. The ablation worked last time because it is not as invasive and difficult as the a-fib.. Lucky me again.. I had the option of taking meds as needed when the A-fib started like I was doing, taking a daily med to keep my heart calm (yeah right), or trying for ablation.
since ablation for A-Fib is more difficult and does not work as often I'm not ready for this right yet.
     I've chosen to take Multaq at a half dose to keep my heart calm and prevent the A-Fib from happening.
I wanted to do something because the longer a person stays in A-fib the more likely they are to have a blood clot or a stroke. Count me out on this score. I have enough to deal with, without dealing with this too.
Feeling a thousand butterflies beating to get out of my chest is bad enough, but to worry about blood pooling in my heart and a stroke... Not this girl..
    Sometimes I truly wonder if I would have been better off receiveing a heart and double lung transplant like I was originally listed to receive.. I am positive my doctors (all of them) will have reasons to veto this train of thought.

Email from a good friend Tonya

2010-02-03T04:58:00.000-08:00

Below is a copy of an email I received from a good friend. Please pray for this family as they send a loved one on to save others:

this is from another board I belong to...

I have copied it over to here for our family to call prayers up for the family..

Two of my nephew's very good friends and wrestling buddies were in a horrific traffic accident this past Tuesday. I did not post then as it seemed neither would survive but both are still clinging to life. The boys are brothers Will (17) and Cordell (15) last name are kept private per parents request.

Cordell has been on life support since the accident and the doctors were looking to take him off but the father felt his hand move and thought it very deliberate by the third time, most doubt it was anything but involuntary but we are still praying for a miracle.

Will came out of his coma but his reaction was so traumatic and his pain so great the doctors had to put him back into a medically induced coma.

This is a wrestling photo I have with my nephew in the front, Will is directly behind him, and Cordell is to the right.

The family is in a state that I cannot begin to describe (as well as us as friends) so all prayers to God our father for healing, comfort and peace will be greatly appreciated.

Thank you~ Penny

Cordell (the young man on the right) was taken of life support and has passed.

The family wanted to let others know that Cordell will go on to save others specifically, an 11 year old boy will be receiving his heart, a 38 year old man his lungs, and an infant part of his intestines. The doctors say that he could save 100 lives.

Dogs, Days, & Possible Depression?

2010-01-31T15:26:00.000-08:00

You may not be aware but I moderate the comments that come through this blog. I moderate mainly because I do not want any profane items showing up.
That being said, yesterday I had comments to moderate for my previous blog "Today's gonna be a great day". I opened the comments and was unsure of how to respond or if I should. The comment left was:
"Every dog has it's day", and this bothered me. I've thought quite a bit about my reaction and others if they had read them. My Prednisone fogged brain immediately saw the negative. Thoughts that ran through my head were: What! Are you jealous?, How dare you?. The more I thought about it, the more I wanted to contact the person leaving the comments and ask if they would explain why they would leave such a comment.
     I've discussed this with a good friend and his response was the positive side. Yeah every dog has his day and you finally get to enjoy yours! I somewhat agreed, but why post it that way? Congratulations of a Gift of Life would sound more apporpriate. During our discussion I had the epiphany that possibly this person was depressed, maybe waiting for a transplant. I explained my reasoning as this person was reaching out for a shoulder or someone to listen and say, I've been there too. Thus the true meaning behind my blog.
     First let me remind everyone reading, that the sole purpose of my blog is outreach. To help the healthy understand what we endure in our quest for survival , but more importantly to be there for those candidates and recipients who need to hear it's ok to feel this way. Please don't misunderstand that because I sound positive now, this does not mean it's been a perfect day at the beach the last 20 years of my life.
It has not, by no means. But and I state this emphatically, I have been there, I have conquered whatever the medical field has managed to throw at me, and I am still positive and ready to tell everyone about it.
     So I would like to close by letting this person know that even though you left the comments, I hope you can let me know you are OK. More importantly if you need someone to listen while you let all the anguish out, I am here. If not me, I will happily put you in touch with others like me who care.

Today's gonna be a great day!

2010-01-28T05:13:00.000-08:00

While this may be great lyrics for a song- The Blackeyed Peas just in case you haven't heard it on TV, I have gotten in the habit of telling myself this each and every morning. I am Blessed to wake up. I am Blessed to be out of the wheelchair. I am Blessed to be off oxygen. I am Blessed my kidneys work and no more diet restrictions.
Let's face it... I'm Blessed.
Actually we are all Blessed to be alive and enjoying life's good moments and obstacles. It wasn't that long ago I was told (3 times) I was going to die. Those are words no one should have to hear, especially at 17, or 31, or 45 for that matter.
I actually didn't hear it at 17, my parents did and told me later. So there wasn't much impact. I did know that my life was going to be shorter than most. So I justified it by telling my parents my philosophy:
"If I die old -no one remembers, BUT if I die young, no-one forgets." This was merely a way for me to put this part of my life in perspective, and cover my nervousness.
This death sentence was always pushed up each time I hit a new milestone. When I passed 20 it was pushed to 25, then to 30. I guess back then it was all the doctors had to go on. I remember mentioning to my Mom that turning 30 was difficult enough, geez do they have to put a death sentence on too?
   Of course there were hospital visits during all of this. After all, I was a boisterous young adult. Plus I was told to go out and live my life to the fullest. If I died, I was going to anyway. Good thought. I took all this in and did just that.
     Waiting for the first transplant didn't seem so bad. I had all this time to prepare for my impending departure. You might say I had consigned myself to the inevitable. NOW,the second was devastating. To say it was devastating is an understatement. To spend 9 years of total freedom, doing things I never dreamed of and then be told I had chronic rejection was enough. The disease and destruction was so fast I found myself wishing I still had Pulmonary Hypertension. After all, it was easier to deal with. To be given soemthing so wonderful as breathing, set goals in life, achieve those goals and then .... You get the picture I'm sure. Oxygen, wheelchairs, gasping for breath, total and utter defeating debilitation. This time was extremely difficult for me to accept. I was NOT ready this time. Please don't take away what I've so recently learned to enjoy!
   This is the time when I began to find comfort in so many little things we take for granted. Sitting outside in the morning with a cup of coffee watching the breeze blow through the palms, a light rain on leaves, the calm of a glassy lake. I also began continual conversations with God. I've talked with God all my life, now we were best friends talking about everything. He convinced me to use my every ounce of energy and breath to get out of bed each morning. Take my meds. Eat-when I'd decided breathing was more important. God was my support system, my main support system. Most of my days were spent alone, so God was my only friend and He stopped by to visit all the time. He taught me to look in the mirror every morning, see a face in pain, smile and say "It's gonna be a great day!"
So with each new hip pain, knee pain, whatever new obstacle thrown in my path: I still tell myself this every morning. It works.

By the way ...I still love the small wonders around me. Yes even the rain and cold.

Contest! I need a name!

2010-01-27T11:12:00.000-08:00

I've recently posted a contest on my other blog I need a name -medieval or mythical for my little pendant. The best name given will win one of the pendants.
I'll be selling them at a Medieval Faire so this is why the medieval name.
I'd like to have something catchy that will attract both sexes. I seriously doubt a boy or man would buy nor wear a pendant titled: "Faerie Stones" even though I really like the name.

If you have a few moments please visit my blog and post your entry..you just might win..

Selma Times-Journal | Giving the gift to keep another alive

2010-01-25T07:26:00.000-08:00

This is one awe inspiring story

Selma Times-Journal Giving the gift to keep another alive

Morning is starting out great

2010-01-24T05:03:00.000-08:00

I wanted to check my stores and email before getting ready for the Medieval Faire.
Well Comcast requested I change my port for my emails which caused ALL my messages to be sent to
Windows Mail. I like ONE email provider, not juggling 2.
Comcast assured me my messages would stay in Comcast.Not.
After sifting through them all I found one exciting email.
It was from a very nice Etsy artist telling me she had included my earrings in an Etsy Awareness Treasury!
I am psyched.
This is my first ever Treasury on Etsy, so my day went from frustrated to cloud Nine!

If you have a moment, please visit the Treasury and post a comment on the wonderful work all the artists have done. Awareness is for us all.

BTW...My design is the Sterling Silver Organ Donor Awareness Ribbon Earrings.

http://www.etsy.com/treasury_list.php?room_id=108005

You may need an Etsy account to post comments, it's free. If you prefer not to open one, viewing means alot too.

Thanks

Hearts-broken and otherwise

2010-01-18T09:06:00.000-08:00

    Well this afternoon I get to wear a 24hour heart monitor. Yay :-(
This seems to be the thousandth time I've gotten one of these jewels and to date have shown nothing to be concerned about. I do have a fast heart rate at times. I mean who wouldn't after open heart surgery and a double lung transplant, a single left lung transplant, a kidney transplant, and a pacemaker implant. Oh and please take into consideration all those meds we love to take. Originally in 1991 after my first transplant I did have to take time and recover from the heart surgery. I had an atrial septal defect which had to be closed surgically at the same time as my lung transplant to be effective. I took Procardia for 6 months and then all was fine for quite a few years.
    Then came time for the 2nd lung transplant and all the meds to curtail the chronic rejection. I was also very close to renal failure at the time. All this combined with the fact I was getting progressively weaker by the minute and wasting away wreaked havoc on my poor tired heart. I was once again placed on meds to control and slow my heart rate. Well, after the kidney transplant it was felt I didn't need to take the meds anymore so they were slowly weaned off. It took all of 6 months to prove how I needed them.
   Being diabetic the first time my heart truly raced I was unsure if it was my blood sugar dropping or something else. I attritbute it to low blood sugar since I had the cold clammy sweat on the back of my neck, the horrible almost nauseaus feel in the pit of my stomeach, etc. We were at a Harley Davidson shop after enjoying a much needed bike ride. All at once I got these feelings and they were not abating. Seeing a small vending area with a few tables, I made a beeline for the coke machine and a table. I drank the coke and it didn't really help too much. By this time I was literally sweating bullets. I used evey napkin the little metal holder had on my table and then another table too. I was speechless at the amount of sweating since I rarely sweat. I was also sitting directly in front of the AC vent. Well, another coke later and a hot dog, I began to feel better, not like myself but better. So with that off we went on the bike and home. I never truly attributed this to my heart rate. Just a freak blood sugar occurrence. I now know better.
   The next time was more vocal. I got up in the middle of the night to use the bathroom. I did as normal, walked into the bath, sat down, and promplty woke up on the floor. Not usual. We finally caught the culprit. Dr. Baz immediately set me up with Cardiology to find the reason . What they found was when my heart rate rose if they pressed on my neck it would slow down to normal. Well since I can't walk around with my hand on my neck except maybe in a vampire movie, we made arrangements for ablation. This ablation was for Ventricular tachycardia. It was for the lower chambers of my heart. Before this I also received a pacemaker, another story altogether, believe me.
      After the ablation all was perfect. That is up until now. Now it appears my issue is with the Atrium, thus A-fib. I've been told this is more difficult to control with ablation, wow lucky me. Anyway as the story goes, last Thursday I was getting out of the recliner and my heart rate jumped from 51 beats per minute to 101. This may not seem like much to you but those darned butterflies that got trapped in my chest were beating like crazy to get out. Not to mention the slight nausea I had too. I immediately took one of my Metoprolol PRN tablets. I continued with preparing dinner, sweeping, etc. hoping my heart rate would slow down. Well it didn't. I decided to take another tablet before I went to bed around 10:00PM. I got a little sleep and woke in the middle of the night not wanting to get up. My heart rate felt slower and I didn't want to do anything to push it into hyper drive. I could feel it rise, then slow, rise, then slow as if it were trying to correct itself. I got up, took another tablet, checked the blood sugar-low again, ate some yogurt and settled into the recliner for a few hours. Friday morning it was at 85 but holding steady. I called the doctor and he decided on the heart monitor. After taking another tablet I am happy to say I've been at 51-55 heart beats per minute ever since. But I did have to take it easy for all of Friday. If this keeps happening it will seriously impede my exercise routine. After all, I'm scared to death to hop on the treadmill when I'm almost at target heart rate without trying!
      Since this only happens about once a month I'm having trouble understanding why I need the monitor. I have a Pacemaker and it should show everything. At least I know it does when the nurse does a printout every 6 months. Why couldn't I just go into the office on Friday and them run a strip? I mean let's be serious if I only have this once a month, I've already had my turn, what's the monitor gonna show? I guess all this stems from the fact I really dread getting this darned thing. I'm allowed this feeling after all these years... Geez, I've earned it right... Oh well, resigned to the fact... Off I go to get wired...
BTW... As I told a good friend when we talked about this yesterday... This is NOT cunducive to a night of great sex nor will it make me feel that way either:-)

HANDBOOK FOR 2010

2010-01-16T06:40:00.000-08:00

Health:

1. Drink plenty of water.
2. Eat breakfast like a king, lunch like a prince and dinner like a beggar.
3. Eat more foods that grow on trees and plants and eat less food that is manufactured in plants.
4. Live with the 3 E's -- Energy, Enthusiasm and Empathy
5. Make time to pray.
6. Play more games.
7. Read more books than you did in 2009. ( If only this were possible, I'd be financially broke)
8. Sit in silence for at least 10 minutes each day.
9. Sleep for 7 hours.
10. Take a 10-30 minute walk daily. And while you walk, smile.

Personality:

11. Don't compare your life to others. You have no idea what their journey is all about.
12. Don't have negative thoughts or things you cannot control. Instead invest your energy in the positive present moment.
13. Don't over-do. Keep your limits.
14. Don't take yourself so seriously. No one else does.
15. Don't waste your precious energy on gossip.
16. Dream more while you are awake than when you sleep.
17. Envy is a waste of time. You already have all you need.
18. Forget issues of the past. Don't remind your partner with His/her mistakes of the past.
That will ruin your present happiness.
19. Life is too short to waste time hating anyone. Don't hate others.
20. Make peace with your past so it won't spoil the present.
21. No one is in charge of your happiness except you.
22. Realize that life is a school and you are here to learn. Problems are simply part of the curriculum that appear & fades away like algebra class but the lessons you learn will last a lifetime.
23. Smile and laugh more.
24. You don't have to win every argument. Agree to disagree.....

Society:

25. Call your family often.
26. Each day give something good to others.
27. Forgive everyone for everything.
28. Spend time w/ people over the age of 70 & under the age of 6.
29. Try to make at least three people smile each day.
30. What other people think of you is none of your business.
31. Your job won't take care of you when you are sick. Your friends will. Stay in touch.

Life:

32. Do the right thing!
33. Get rid of anything that isn't useful, beautiful or joyful.
34. GOD heals everything.
35. However good or bad a situation is; it will change...
36. No matter how you feel, get up, dress up and show up.
37. The best is yet to come.
38. When you wake up in the morning, thank GOD that you are alive. ( most definitely !)
39. Your inner most is always happy. So, be happy.

Birthdays..How many do you have?

2010-01-12T08:03:00.001-08:00

      Many of you may think this a strange question. As for me, not at all. As I sit here with an excruciatingly painful toothache I've pondered this question.
      On January 1st of this year a friend came by to celebrate her 50th birthday with us. I grilled chicken outside with shrimp scampi as an appetizer. And yes, we were able to grill outside on our one warm day before the unbelieveable cold hit Florida. As a joke I made a banner that read "Happy 21st Anniversary of your 29th Birthday". As we age we seem to try and forget the most important day of our lives. In fact it is really the only day that matters, for without it we would cease to exist.
     As for me, I celebrate 5 birthdays. Yes my biological birthday is very important, but so are my transplant birthdays of which there are 3, plus my donor Susie (the only one I know). Many prefer to call their transplant birthday their anniversary, which has little logic for me. After all wasn't I given the Gift of Life?
If not for those transplants I would not be alive writing this today. Those who've had an organ transplant, know the emotions that go hand in hand with being a recipient. This Gift of Life can turn the hardest person into emotional mush. I can say this with clarity, because I was afraid of nothing before my first transplant. If my car broke down on a dark road, I'd walk home (this was before cell phones). Now, no way would I do this and so foolishly run the risk of my donor families hearing I took this chance with what I was given.
    I remember a newspaper article that ws done on me in 1991 post transplant. In this article I stated I intended to enjoy each and every wrinkle and grey hair I get. So far so good. I' getting them. I'm tolerating them. I'm not doing anything about them. I will age gracefully with all my scars, wrinkles and grey hair completely intact.
    Now that this is written I can decide which will be more excruciating. The toothache or the cost of the antibiotics to make it go away.. Either way I will feel the pain, believe me.

By the way... My friend dropped me a thank you card for her celebratory dinner. She thanked me for making her "29th Anniversary of her 21st Birthday" so much fun.. Guess she wanted to be younger still

What Organ donation means to me

2010-01-07T05:46:00.000-08:00

OK, so here I go.

After long thought, this is what organ donation means to me.

1.It means no more oxygen (at least for awhile)

2.No more meandering just to breathe, I CAN walk at a decent pace, and most of the time faster than others!

3. No more blue fingers, lips, or under my eyes.

4. No more Procrit shots weekly.

5. No more food lists.

6. I can have potassium & phosphorus in my foods now. (They're good for me again.)

7. Bright sunny days NO matter what the weather.

8. Helping inspire others facing the same health issues.

9. Walk my 4-legged boys twice a day.

10. Enjoy summertime, beaches, picnics,etc without struggling to breathe.

11. Wash my face. (those who know me, know why)

12. If I take a 2 hour shower it's because I want to, not because it takes that long trying to breathe to finish.

13. Celebrate another Christmas in Key West.

14. Spread the word about the importance of making sure everyone gets another chance like me.

15. No more swollen ankles

16. No more compression hose!

17. No more wheelchair !!!!!

18. No nebulizer.

19. Fantastic blood pressure.

20. Life, love, enthusiasm ,dreams, goals.

21. The undeniable proof that there are strangers in our lives who become our saving angels.

It's That Kind Of Day

2009-12-30T13:25:00.000-08:00

Have you ever had a bad day and said that. "I'm having that kind of day." For a long time I changed it slightly and said "I'm having one of those lives."You know the kind. You can't seem to get ahead, you feel like the world is crashing in around you. And you seem to be the only one holding it up with your small, weak TWO hands.
Being one of the "chronic/terminal" humans in life, can make life seem daunting. Not only am I struggling against everyday obstacles like everyone else, I also have the medical struggle for survival. So many times I wish I only had to see one doctor one time in one year. Can you spell relief? Ever wonder what heaven on earth would feel like. For me, read the above sentence again.
This is where I talk about support systems. I had a truly magnificent support system with all three of my organ transplants. In fact, if not for my parents and family I might not have seen the first one. With the loss of my Daddy this support system seemed to crumble. I've learned mentally to handle times on end in the hospital alone. This includes holidays, birthdays, etc. I thank God I love to read and create. That and wear holes in the carpet or tile from walking the wing so much. I am a survivor.
We ALL need a champion pushing us on to newer heights and accomplishments. A sounding board. A confidante. That One True Friend. I've always been a loner, mainly because no one wants to see someone waste away and die on them. No ONE. Been there, experienced that, overcame the hurt and grew stronger.
Throughout my life I could always count my true friends on one hand. Most times on one finger. Anyone can have tons of friends or be popular. I'm referring to that One True Friend.
That special friend you seem to have an honest trust with. You can tell this friend anything, even your deepest darkest secrets and fears. You have such a strong trust and truthfulness between you, you know beyond a shadow of a doubt they will NOT betray that trust and tell. Nor will they ever leave your side, even if you inadvertently push them away. This friend is always there in the shadows, quietly waiting for when you need them.
This friendship should be cherished and honored for it is so rare to find. There will be times of hurt, but this friendship will endure even when you think it will not. This is the support system we all need. It is equal on both sides.
I have had this one true friend only once in my life. I miss our talks. Our debates. Mostly I miss someone who will listen to all my fears about my health and still be my champion. Someone who was there all the time no matter what.
Now however it is my time to quietly wait in the shadows until I am needed. Whenever that may be. Dear friend, I am here.

Petition to Enable Treatment Treatment of Cystic Fibrosis in Japan Petition

2009-12-23T06:44:00.000-08:00

Petition to Enable Treatment Treatment of Cystic Fibrosis in Japan Petition

A New Approach to Organ Donation-The New York Times

2009-12-22T04:01:00.000-08:00

Here is an extremely informative article on a new yet controversial procedure. Brain death vs Cardiac death

http://www.nytimes.com/2009/12/20/magazine/20organ-t.html?pagewanted=1&_r=2&emc=eta1

December 16,2009

2009-12-16T12:27:00.000-08:00

As I was looking through old photos I came across the above photo from "my past life". As I looked at the picture I thought, "Who is this girl, or better yet Where did she go?" What you don't see in the photo, is the fun-loving, nary a care in the world kinda person. The business suits and heels kinda girl. The goal achieveing person in life. Somewhere soon after this photo I forgot how to dream. When your facing the end of your life, dreaming seems fruitless.

This made me think, of how outside influences change us into people old friends wouldn't recognize.

Of course they see the original person they knew inside, only we seem to have lost sight of that person.

This picture was before I was listed for my first transplant. I was living my life basically my way, working, being with friends from work, going to the beach, enjoying it. But, there were things those old friends never knew.... I was sleeping with oxygen every night, close to being on it 24/7. Work was only to keep health insurance and so exhausting I struggled to make it through each day. The chest pain from struggling to breathe throughout the day, was so bad I needed something for pain so I could sleep at night. I knew what was coming quickly in my future. My lungs were deteriorating and a transplant was getting close. Tragic moments like this make us grow up and mature far too quickly. We react in the only way we know how. Try to maintain a semblance of normalcy and acceptance so everyone else doesn't freak out over your situation. My friends from work were handling my health worse than I was and my concern was for them. One in particular, Vicki made the statement: "You know out of all of my friends I never thought God would take you first." Thankfully He decided I was/am still a work in progress and has allowed me to stay a little longer than predicted.

Looking at this picture I realize I miss the old life. I was confident, and energetic in all aspects of my life mentally. How do we find that person again? That one before health issues changed us into a mechanical version of ourselves? Am I afraid everyone around me would think I've finally lost it, if I started acting like "who I really am"? Probably some, most definitley others. My students wouldn't blink an eye, they've witnessed this side of me during class. My friend Debbie? no. She brought out my old side too many times when we were on a girls day out. I would love to bring out this person all the time, but how? It's been close to 20 years since I was per se "me" all the time.

"Me" somehow got lost in hospitals, doctor offices, hospitals (too many holidays spent there), medications, wheelchairs (trying to walk again), chronic rejection, surgeries,etc. The real me seems to come out as a defense when I'm concerned or fearful about my future. Sort of "let's live each minute as if it were our last" type of situation. Even though I try to live my life this way each day, I do it for my donors and their families. Now I have to remember how to do it for "me" as well. This way I honor them more than I already am.

I hope this has helped a few of you find your own "me" deep inside and is preparing to let it free. I am.

26 Operations-13 kidneys

2009-12-14T05:48:00.000-08:00

This was in todays newspaper. It is one inspiringly hopeful story!

26 operations, 13 kidneys: hope to few with little

By LAURAN NEERGAARD

AP Medical Writer

Published: Monday, December 14, 2009 at 3:17 a.m.

Last Modified: Monday, December 14, 2009 at 3:17 a.m.

WASHINGTON - Twenty-six operations put healthy kidneys into 13 desperately ill people: Doctors in the nation's capital just performed a record-setting kidney swap, part of a pioneering effort to expand transplants to patients who too often never qualify.
Read the entire story at:

http://www.heraldtribune.com/article/20091214/APW/912140514

Thoroughly disgusted with CBS

2009-12-05T06:32:00.000-08:00

I just received this in an email from DonateLife Hollywood...

Can a single TV show actually save lives? "Three Rivers," a CBS prime-time series on donation and transplantation, did. Sadly, that remarkable fact was not enough to save itself.

As the donation and transplantation community mourns the premature shelving of "Three Rivers," we stand in awe of its achievements. A month ago, a San Antonio, Texas, family donated the corneas of a loved one who had passed away. They said yes because they wanted their family member to help others, just like on "Three Rivers."

Two weeks later, a family on the East Coast donated the organs of their teenage daughter because she had talked to them about donation after watching "Three Rivers" on a Sunday night.

On Thanksgiving weekend, a daughter in Louisiana gave consent for her mother to save three lives. She too was a fan of "Three Rivers," and the coordinator was impressed by how much the family knew about the donation process from watching the show.

For years, the organ and tissue donation community held its breath every time donation was used as a television storyline. Inaccurate and horrific scenarios about black markets and stolen organs made us initiate letter-writing campaigns; even worse, research showed it kept viewers from signing up to be donors.

Finally, one show got it right. "Three Rivers" viewers got something extra with their nightly fare of drama: They had a chance to learn the truth about donation and were challenged to talk about a topic families rarely wish to discuss - death and their wishes at end of life.

Please, take a moment and let CBS know what you think of this illogical decision to cut Three Rivers TV show.

The Holiday season has officially begun

2009-12-01T11:01:00.000-08:00

      I'm finally home from Jacksonville and spending Thanksgiving with my family. I wanted to show everyone what I saw on Thursday morning two weeks ago.
    I opened the front door to walk out and get the newspaper, when I felt a warm glow. The warm bath of golden sunlight seemed surreal in this area, and something I've never seen before. The entire driveway was a golden hue. Looking up to the east I saw the most wonderful sight. The sky was a gorgeous mix of golds and reds, with a heart warming glow in the clouds.This seemed more like a sunset not a sunrise. I looked to the south east and to another beautiful display. I hurriedly ran inside praying my camera was charged and it wouldn 't disappear in a "poof" before I got a photo.
    Without thinking, sights such as this remind us non-verbally what no one can tell us. We are Blessed. If not for our organ donors and theier families, I would never have been granted such a glorious morning.

Yes my camera worked, and yes each time I see these 2 photos I remember that wonderfully warm feeling (warm fuzzies) I felt that day. May you be granted this chance, and memories too.

Being thankful

2009-11-25T06:42:00.000-08:00

As we go into Thanksgiving here in the U.S. I always think back to all I am thankful for.
Please take a moment in your busy holiday, look around at all the happiness, trials, and family,friends in your life. In one way or another you are BLESSED.
I've spent a few Thanksgivings and other holidays in the hospital. If you're a candidate or a recipient you can relate to this. We don't like it, but it is a fact of our lives either way. We learn to grin and bear it so to speak.
If you are a transplant candidate:
Be thankful there is medical technology offering you the possibility of a new life.
Be thankful we have surgeons, physicians, and coordinators who have the knowledge and caring to learn more and help you achieve your dreams through transplantation.
Be thankful there are families who love life enough to donate in their time of extreme loss.
Be thankful there are organizations out there promoting organ donation and helping you receive your new chance.
Be thankful there are recipients to boost you up, keep you hoping, and helping you along the way. If they did it, you can too.
Most of all, be thankful we have a higher power, who will listen calmly, without interrupting, let you cry your eyes out until you are exhausted. Then lift you up so you can continue your fight for survival.

If you are a recipient:
Be thankful for all the above, and NEVER forget what it took to get where you are.
Never lose sight of the most precious life you've been granted.
Remember your donor/s and their families. You are here celebrating another holiday thanks to them, while they have an empty seat at the Thanksgiving table.
Be thankful for EVERYTHING, good, bad, and otherwise. If not for the miracle of transplantation, you would not be around to enjoy any of lifes ups and downs.
Make a solemn vow to promote organ donation to at least one person a week. Remember someone was promoting transplantation when we were waiting. It's only fair to take care of those waiting behind us.

As everyone looks around the Thanksgiving table tomorrow, be thankful you are here.
Thanks to a donor, a donor family, a transplant center, your doctor and the wonderful coordintaors who keep us positive.

Have a Blessed and wonderful Thanksgiving everyone. Be safe, be positive.

A Blessed Weekend

2009-11-15T10:05:00.000-08:00

   Well we are in the last day of National Donor Sabbath Weekend. I am also celebrating 7 years with my second lung transplant today. It was 7 years ago on a Friday morning when my call came in. I had just returned from a trip to Shands in Gainesville and discussed my Advanced Directive, knowing I had minimal time left to live. The phone rang in the middle of the night. You always get an ominous feeling when the phone rings at night. Something has happened, or a loved one is sick.
     Somehow I knew this was my call. I was the one sick, but with Gods' blessing and Shands hospital this might change. I remember waking my parents who were visiting at the time and everyone seemed to launch into hyper-drive. Everyone that is, except me. I didn't have the energy, stamina or strength to try. As I watched my parents rush around to get ready for the 2.5 hour drive I began to have doubts. I knew my physical strength was gone, it'd been the longest 2 years of my life, and I wasn't sure I would make the surgery. I also didn't want to waste a precious lung on someone who might not make it, when the lung could go to someone with a better chance than me. As Mom came in to give me a hug (somehow she knew I was having doubts), I asked her if she thought I could make it. This was probably the first time but most definitely the last time my parents would see my resolve falter. I remember she looked at me with all the love in her eyes and said " You can make it through anything, you're strong". Of course she'd say this, after all she's a mother. But , she was referring to my mental strength, while I was worried about my physical strength.
    I'd been through this before, but this time my endurance was nowhere near what it was in 1991. Chronic rejection is much worse than Pulmonary Hypertension could ever be. Chronic rejection is tough to endure. It was the biggest test of life I have ever had to endure, and pray to never endure again. Though I know I will endure it at some point. I hope to make it as far in the future as humanly possible.
     While I was questioning myself, I remembered it was the start of National Donor Sabbath Weekend. Surely, this is a sign that this transplant was meant to be. With all my doubts I had to at least give it my best shot at success. So off to Gainesville we band of merry men started.
     The holding area was a beehive of activity. I was introduced to my surgeon Dr. Staples. Yes, this is his real name. I made the off the wall comment, " and you use staples right?" This was my way of releiving some tension. I then met his wife, so I now had Staples & Staples MD... Sounds kinda cool huh?  It was during the wait process I discovered he was concerned with doing my transplant because I had lost down to 90lbs.! Wow, and my scale said I was at 100 lbs. it had been difficult to keep weight on at this point, since I was using all my calories to breathe. I had long ago consciously made the choice between eating or breathing. breathing was mandatory- eating optional. Thankfully the decision was to go ahead with the transplant.
    So today, as they say 7 years later- the rest is history.

Remember : Be a Miracle in someone's life, Become an organ or tissue donor.

This weekend

2009-11-13T03:48:00.000-08:00

Today November 13-15,2009 begins National Donor Sabbath Weekend. Being a 3-time transplant recipient. All my online stores & the Christmas Bazaar at the Cultural Center will offer 10% donation of all sales Friday & Sunday, 100% on Saturday will be donated to The Florida Foundation for Lung Transplant Research. Please spread the word and join me in honoring my 3 organ donors and their families.

A little holiday help

2009-11-10T06:52:00.000-08:00

I just received an email with a website that many of us could use in these economic times.
http://www.angelfoodministries.com/

You can enter you zip code to find the one closest to you.

I looked at it and found some really decent food buys. From what I can gather it's open to everyone.

I'm seriously checking out the Thanksgiving dinner package.. It would save me alot of shopping!

Prograf vs Cyclosporine both a necessary evil

2009-11-08T13:33:00.000-08:00

     I was fondly remembering by experiences with both Prograf and Cyclosporine. In 1991 for my 1st transplant,lung transplant recipients were not given Prograf. Only kidney and liver reccipients and a few hearts. My Cyclosporine was a liquid dose that had to be mixed with a liquid. NOT water, the taste was horrendous.
    Driving from Pittsburgh to Jacksonville, Fl provided a few laughs along the way. I wanted to see life again-not fly- so we drove. I had a Hickman IV because I was in a study (yes the importance of reseach) regarding Gancyclovir vs Acyclovir. I would give myself an IV for 90 days. Stopping at restaurant was the first of my revelations. I asked for a small glass (shot size) of either milk or juice. The look on the waitress's face was incredulous. Why would anyone want a small shot glass of milk or juice? When she brought it, the other patrons stared at me in horror as they watched me draw up a syringe of liquid from a bottle, put it in with the milk, stir it up and at the speed of light drink it. Looking at my parents I remember laughing and saying "What do they think I am, a drug addict? As if I'd do all this in public if I was." If they only knew how horrible Cyclosporine tasted...
      At the hotel we had to change the dressing on my IV site. Upon leaving in the morning I again laughed realizing the maid would probably think whoever left this room was probably suffering from a gun shot would. We did leave alot of bloody gauze bandages behind in the trash. Put that with all the unit dose empty packs of meds, and I just know she knew it was a drug bust gone bad. Since this I've often wondered how others viewd the life of a transplant recipient.
     Cyclosporine also had one rule. Do not take it straight. I found out why. I was at work and realized someone had taken my bottle of juice from the fridge for themselves. CARDINAL RULE : LEAVE ANOTHER PERSONS JUICE ALONE! You never know what they might need it for. My only option was to shoot it straight from th syringe. I counted to 10, held my breathe and pushed the plunger.
OMG!!! YUCK!!! Now I know why we're told to take it with other fluids. To this day it boggles my mind trying to figure out why they cannot make these meds taste better. they've been around forever.
      I was told I couldn't have Prograf when I later asked because switching might cause cancer. Geez I was immunosuppressed anyway don't I still this chance? Yep, only mine has been pre-skin cancer. It was during chrinic rejection when I again asked this same question. After 30 days in Pittsburgh for thymo treatments I was told I was being put on Prograf. I asked, "but can't this cause cancer?" This time i was told yes, but at this point you're dying anyway" Well, I guess they're right on that one. Chronic rejection is a royal pain. Been there, done that, don't wanna again.
    so now I'm on Prograf which helps control chronic rejection better than the cyclo. Lung transplant wise. Kidney transplant would rather put me back on the Cyclo. Thank you Dr. Baz.
      Cyclosporine now comes in capsule form. One very large horse pill and one very small shetlad pony pill, 100mg and 25mg.
So if your dosage is 175mg you end up taking 4 pills. I remember I was told at one time that the pills smelled like horse sweat.
To which I sweetly replied, "How do you know what horse sweat smells like?" At last they didn't taste like it.Not that I'd know.
Prograf is the same. 1mg or 5mg, so I now take 3 tiny capsules twice a day. Amazing,Cyclosporine was 175mg twice a day and Prograf is 3mg twice a day. Wow those tiny little capsules pack one heckuva punch.

Doing great!

2009-11-05T09:46:00.000-08:00

Well I'm doing great for a recipient. Not complaining. It only gets worse if we do.
The pain in my left side has lessened, leading us to believe it is fractured ribs from coughing.
I have a few new aches though. My right ankle wants to rebel on my walks. Couldn't it do this when I have to clean the house? I continue to walk, just a little slower until it goes away.
   Insulin is doing great. The Endocrinologist is happy with the results-just not with me doing it and telling him later. It would be easier if doctors offices were easier to get in touch with, no answering machines and waiting 24-48 hours for a response. I miss the days of old fashioned doctors offices. You know, when I was a person not a patient and my phone calls mattered enough to not send me to a machine. I realize this can't happen with a transplant center, they have way too many sick patients to answer each and every call personally. Even though I must say that everytime I'm prepared to leave a message, Melissa answers the phone and throws me off track. She's such a wonderful coordinator.
   The endo discovered I have alot of sinus drainage we need to take care of immediately. He asked me if I'd ever taken antibiotics. LMAO......! Me ? No-never. I told him Dr. Baz prefers Levacquin and he wrote a script for Zithromax. I knew what Melissa would do, so I just called her and she called in the Levacquin. We could save so much paper if we were listened to. But I also know that I'm a "scary" proposition for most physicians. Just not Shands Lung transplant. I'm just another recipient. Thank goodness for that.
    Being alone for a few days me & the boys are gonna have a great time! I've got the dining table set up for "design time" and they get to relax. I'm taking a class on Medieval history so gonna work on that a little, make a few pendants, take more photos and then take a nap.
     Hey, we all need our nap time..

Insulin results

2009-10-27T10:21:00.000-07:00

Sorry no post yesterday, Hubby surprised me with a trip to the beach. Motor home, boys and me all on the road for a day.The beach at Nokomis was beautiful. A sunny 87 degrees and a beautiful Gulf breeze.
My blood sugar has been doing great in my experiment. The first day it was kinda wonky ( a new word of mine) but still in range. As of yesterday it started to level off and stay where I wanted it :80-90 range.
   Now I actually feel hungry as the insulin starts lowering the blood sugar. My weight has started to decrease as well... YAY!! I'm able to eat the type of foods I like and keep my blood sugar in range.   I'm a healthy eater, love fish, chicken, veggies and fruit so this also helps keep everything ok.
   We went out last Friday night for fish and Larry wanted to share a platter. I should have known better. It was a fried platter and I even commented that it had too much batter and not enough seafood. This should have been my first clue. Three hours later my blood sugar reading at bedtime was a whopping 175! This did not sit well with me. I decided there and then that I would take back control.

      Along with the diet, I've incorporated more exercise. I now walk more in the morning as well as the evening. Our days are less humid and we're now getting the Gulf trade winds so walking is enjoyable instead of a chore. My lil guy DB loves it too. He's a big concern with the heart problem, so he's getting his heart walks too. This along with writing down my calories/fat content at each meal and a final tally for the day help me understand just where I need to tighten the belt so to speak.

I still have the pain in my left side, hopeful it's fractured ribs and not something more serious and today my right ankle is extremely painful. I've said many times I live with some sort of pain each day, now I guess it'll be a few pains each day. Still walked, still did laundry and cooking. If I'm going to be in pain, I intend to have a darn good reason for it.

Ain't it nifty???

2009-10-25T11:54:00.000-07:00

I've actually hit fifty! The big 5-0, book em Dano. Oh No 50!
Yep I made it. Not bad for a southern girl predicted to die before she was 20.
I'd always rationalized an early death to ease the burden on my parents. "If I die old, no one remembers but, if I die young -no one forgets". " Just think I'll never get wrinkles!" Well, now I have to rethink my rationalizations. I discovered that I'm proud of each and ever wrinkle. Each and every grey hair, well I've earned them all. To be honest I've probably caused and earned a few more than I show.
Turning 50 is usually a bench mark for most people. Many stress about "the over the hill" stigma.
HEY, I kinda like the idea that it's a slow downhill slalom from here... Collective word there---slow...
    I decided to do like the "normal" folks and take better care of myself starting today. Larry walked the boys, left early and I race walked to catch up. We did a good 2.5 miles and a few extra tenths for good measure. I've had the feeling I was eating to please my insulin injections, so I'm trying to take it a lunch time now instead of in the morning. I seem to have a bad habit of dropping around 11:30. I end up eating even though I'm not really hungry. it's been this way for a few weeks, so I'm doing a little experimenting. Please, don't do this yourself because I am. I've been able to control my blood sugar without insulin for almost 8 years, so this is an old habit of mine. The start of insulin has also produced a few pounds on the scale, which is driving me nuts. I'm not sure how to lose it while on insulin. I'm afraid that if I reduce my portion size it will cause another blood sugar drop. And these I hate. If you've ever had one you know why.
The cold sweat on the back of your neck, shaky hands, etc... Not a great feeling. Plus the shock of seeing you blood sugar readings only make it worse as you try to grab food and stuff it in yout mouth. Remembering to not spike your blood sugar because you'll feel worse trying to get it back in range.
So, this morning instead of taking 15IU at 8:00AM, I'll take it later.
I ate my breakfast: pineapple, orange slices and a raisin bran muffin. I then set out on a brisk 2.5 mile walk, met up with Larry and my boys and continued on. After getting home I watered plants, (gotta keep those grape tomatoes going) then on to grocery shopping.
     I used to take NPH insulin around lunch time because it caused to drastic a drop in the mornings for me, so this is my game plan again. At lunchtime 12noon my blood sugar was 100. I took 12IU of Levemir and went to lunch. I split a tuna sub with Larry so we'll see how it goes.
   I also have an appointment with my endocrinologist next week so this is a good week to start my game plan. Probably a bad day as i have no idea what Larry, Debbie, & Larry (her Larry) have planed for tonight.

    More tomorrow on how my theory is working.

Have a great day, I am and will... Stay safe....
IT'S A WONDERFUL LIFE AS LONG AS WE ARE ALIVE AND ABLE TO BE WITH FRIENDWS AND FAMILY.

Surprises our spouses do.

2009-10-24T12:43:00.000-07:00

I got a phone call at 7:30AM Wednesday morning from Eric of the Herald Tribune.
My wonderful husband called and told them my story and how I'd be celebrating a half century on Sunday.
We set up an interivew time of 10:00. OMG!!! I taught class Tuesday night , the house was a wreck, and I was just making breakfast.
I finished breakfast, did dishes, swept and mopped floors, showered, and walked the boys. I was just walking from the back yard when he arrived at 10:00. Talk about a whirlwind.

This is one of the best weekends of my life. Friday I celebrate 18 years with the first lung transplant and Sunday I flash forward to the big 5-0..
Yes I'm damned proud of each and every grey hair and wrinkle. I've earned them many times over!

Below is the article from the Trib..

Have a great day

Ernst: One living reason to donate your organs

By Eric Ernst

Published: Friday, October 23, 2009 at 1:00 a.m.

Last Modified: Thursday, October 22, 2009 at 6:26 p.m.

When she was 18 and undergoing a Navy physical, Bette Luksha-Gammell got the shock of her life.

"You'll never have children, and I'm surprised you're still walking," a doctor said. He later told her parents she probably wouldn't live past 20.

Unknown to her, Gammell had pulmonary hypertension, and her lungs and parts of her heart were three times normal size.

Following that news, a gradual decline left Gammell hooked to an oxygen tank for too much of her days.

Eighteen years ago, doctors transplanted two lungs into Gammell and sewed up a hole in her heart. In 2000, after her body rejected those organs, she received a single lung transplant in 2002. Then, about four years ago, she received a transplanted kidney after hers was damaged by the medicines she took for her lungs.

She now lives in North Port with her husband, Larry. On Sunday, she'll celebrate her 50th birthday.

Gammell may have lived a life of struggle and pain, but she doesn't ask, "Why me?"

"Never question God," she says. "You might not like the answer."

Instead of wallowing in self-pity, Gammell adjusted her goals and went to work for Disney cruise lines and as a baggage handler (no kidding) for Continental Airlines.

"I'm one of those people, I have to be doing something. I can't sit at home and collect a check every month," she says. "I'd love to be back at work, but I know the risk I take."

Gammell settles for teaching a wire jewelry class at the Cultural Center of Charlotte County.

She's also an advocate and ambassador for organ transplants. At Disney, she started a support group called Second Chance. She records her daily struggles at www.survivinganorgantransplant.blogspot.com. She writes letters with suggestions for Medicare reform.

And she has traveled across the country to talk with potential recipients filled with doubts, fears and conflicting emotions.

At 9 p.m. Sundays, she watches a new CBS television series, "Three Rivers," which follows the lives of organ donors, recipients and surgeons at a fictitious hospital in Pittsburgh.

Gammell calls the show the first national platform for organ donations.

"It certainly starts a conversation," says Jennifer Krause, public affairs manager for LifeLink Foundation.

The foundation, which arranges organ donations from Tampa Bay through Fort Myers, reported 584 transplants in its coverage area last year. Another 437 donors provided tissue for such uses as bone grafts and heart valves.

Gammell sees donors as the real heroes. "I try to do something, each day, to honor donor families," she says. "At the most grief-filled time of their lives, they gave up someone they loved to give life to someone that someone else loves."

To recipients and donors, she offers, by her own example, a simple creed: "You have all these issues, but you have to stay positive. Being positive keeps you alive, whether you've had a transplant or you're healthy."

To become an organ donor, register online at www.donatelifeflorida.org.

Eric Ernst's column runs Wednesdays, Fridays and Sundays. Contact him at eric.ernst@heraldtribune

.com or (941) 486-3073.

Daily obstacles

2009-10-20T06:31:00.000-07:00

After Saturdays heart rate issues, I felt drained on Sunday. My heart rate was at 75 in the morning-not what I wanted or where it should be.But I'll take it. I took another pill as I as told to do and kept busy so my blood pressure would stay in a normal range.
I left for my morning walk feeling kinda blue funky. I hadn't realized that during the night a major cold front (yes in s. Florida) had moved in. It was rather chilly in shorts and a t-shirt!

Me & the boys walked faster! Poor lil Deebs with his bad heart was doing great with the drop in humidity and cooler weather. Glad he was. I started sneezing, coughing and thought"great all I need now". I now knew why I was feeling so funky.

When we finally got home, I decided it was time to take it easy and get over this fast. I've always been a firm believer that if I'm going to pay for advice and a physician I'm going to do what they say. Why pay out precious money if I'm not gonna follow through. After all a doctor can only take my health so far, the rest is up to me. WooHoo bon-bons, the couch, a good movie, and my boys! Well, skip the bon bons-I'm diabetic and hate taking insulin.

By Sunday evening, my heart rate was back to normal. Now the dilemma. Do I call Melissa (my coordinator) and tell her about the sneezing & coughing or see what transpires? Monday morning and I was feeling great, like my old self (as good as that can be). I decided to let it ride since I was no longer coughing and sneezing and my spirometry looked good too.

In case you're wondering, spirometry is a lung function test we recipients perform at home. It allows us to keep watch on our numbers and can help signal possible rejection (acute not chronic) in time to stop it. Spirometry can be uplifting or depressing. While in chronic rejection and waiting for my 2nd lung transplant watching the numbers steadily drop was such an emotional upheaval. The doctor finally told me to stop the spirometry-we knew what was happening and it was worse for me to see that I was actually dying than to know it mentally. At that point the adage "reality sucks" was true.

Monday also brought about major comcast issues with the internet adding this to a slow pc and I didn't accomplish much online. Even my 3 online stores suffered from lack of attention.

The PC is slow and the laptop wasn't charging...lovely day of obstacles. But, that's changed for a little --YYYYaaaayyyyyy. For some unknown reason the laptop decided to start charging, just as I was going to buy a new battery.. Thank You God!!!! You seem to take me to the brink and then just when I make a decision you show me a different route to take.

Well, feeling better today (Tuesday) I'm hitting the treadmill. Wearing my Dash for Donation 5K t-shirt from the 2006 US Transplant Games for encouragement I'm psyched. Then on to the drudgery of laundry, floors, dishes (already did those once today) and eventually relaxing with my boys (all 4 of them).

Butterflies, Blocks and A Heart

2009-10-17T06:56:00.000-07:00

The title may not make much sense, but it's how I've come to rationalize last night.
In 2006 I had Ablation therapy on my heart due to the inability of medication to control a rapid heart rate. Everything has been awesome! until last night.... For the last 3 years my heart rate has been in the low 50 range, something I never thought I'd see or experience.
About 9:30P.M. as I got out of my recliner to get ready for bed, I felt a bit of nauseau on standing up, followed by a cool sweat. My insulin sometimes makes me feel this way when it starts to work, sort of wheels churning in my abdomen. I checked my blood sugar and it was a nice 103 so this was not the problem, and it still continued.
I checked my blood pressure and heart rate.. my eyes popped out of my head! Heart rate of 120! No, this can't be ..So I checked it again, and again in another 15 minutes. It got to 100 beats per minute, but still not where it should be. I've always had the nagging fear that the Ablation could reverse itself and prayed I wouldn't be one of those unlucky ones. But I must say, this really set my mind reeling... We all know that when things like this happen we're told to keep calm and let it drop naturally. BUT HOW DO YOU STAY CALM WHEN YOU'RE WORRIED? I took one of my PRN tablets for heart rate and waited for a result. My PRN medication is 2 years old and this is the first time I've had to take it.
After 30 minutes, no results... I had to do the one thing I dread. Call my lung transplant coordinator on a Friday night and wake her and her kids up. I placed the call, she and my doctor both said since it was steady and not erratic just try and get some sleep, but take another pill in the morning to keep it low and correct the problem. Please tell me how to get sleep when it feels like a concrete block is on my chest and a thousand butterflies are fluttering around inside looking for a way out? After awhile it felt like those butterflies hired a few thugs who were using bats and clubs (anything available) and trying to beat their way out!. Ever have one of those headaches where you feel the pound each and every time your heart beats? That's the beating those thugs were giving me. Only at 116 beats a minute! Darn little buggers! One might think I was charging them rent or something, they way they were going at me!
I went from the recliner to the couch, to the recliner. Each and every time with 3 little 4-legged boys following me. I was seriously tired. (I thought dead tired or dog tired took it to far) Not enough sleep or rest makes for a terrible day to follow, especially for the chronically ill. Finally about 3AM the pounding stopped, guess the thugs came to an agreement with my chest. Anyway it was calm enough for me to try the bed again, not slower but calmer.
I dozed in and out of sleep until 6:30, no deep restful sleep tonight. Back in the recliner for my morning date withe the boys, take the blood pressure, read a little of my book. My heart rate was 75. WHEW..... I can't begin to explain the relief. Now to get it back to where it should be, and prevent the nightmare journey of 3 years ago when I walked into the Emergency room at Shands with a heart rate of 196.

One good thing about all this..... It made me forget about the pain in my left side. Possible fractured ribs from coughing... well at least until this morning when all was calm and it returned..

Now for hte morning walk and keep my heart as healthy as I possibly can.

Beliefs

2009-10-11T07:39:00.000-07:00

I Believe...

A Birth Certificate shows we were born.

A Death Certificate shows we died.

Pictures show we lived!

Have a seat...Relax. ..And read this slowly..

I Believe...

Just because two people argue,

Doesn't mean they don't love each other.

And just because they don't argue,

Doesn't mean they do love each other.

I Believe...

We don't have to change friends if We understand friends change.

I Believe...

No matter how good a friend is, they're going to hurt you every once
in a while, and you must forgive them for that..

I Believe....

True friendship continues to grow, even overThe longest distance.

Same goes for true love.

I Believe....

You can do something in an instant That will give you heartache for life.

I Believe...

It's taking me a long timeTo become the person I want to be.

I Believe...

You should always leave loved ones with
Loving words.

It may be the last time you see them.

I Believe..

You can keep going long after you think you can't.

I Believe....

We are responsible for what we do, no matter how we feel.

I Believe...

Either you control your attitude or it controls you..

I Believe...

Heroes are the people who do what has to be done,When it needs to be done, regardless of consequences.

I Believe...

Money is a lousy way of keeping score..

I Believe...

My best friend and I can do anything or nothing,And have the best time.

I Believe...

Sometimes the people you expect to kick youWhen you're down will be the ones to help you get back up.

I Believe...

Sometimes when I'm angry, I have the right to be angry,But that doesn't give me the right to be cruel.

I Believe...

Maturity has more to do with what types of experiences you've had, and what you've learned from them, and less to doWith how many birthdays you've celebrated.

I Believe...

It isn't always enough to be forgiven by others;

Sometimes, you have to learn to forgive yourself.

I Believe...

No matter how bad your heart is broken,The world doesn't stop for your grief.

I Believe....

Our background and circumstances may have influenced who we are,But we are responsible for whom we become.

I Believe...

You shouldn't be so eager to find out a secret.

It could change your life forever.

I Believe....

Two people can look at the exact same thing and see something
totally different.

I Believe...

Your life can be changed in a matter of hours by people who don't even know you.

I Believe...

Even when you think you have no more to give, when a friend cries out to you--

you will find the strength to help.

I Believe....

Credentials on the wall do not make you a decent human being.

I Believe...

The people you care about most in life are taken from
you too soon.

I Believe...

The happiest of people don't necessarily have the best
of everything;They just make the most of anything.

Three Rivers Impact

2009-10-04T09:45:00.000-07:00

A good friend of mine forwarded a newspaper article to me a few days ago. The article was a journalist making a brave attempt at tearing down the new CBS show "Three Rivers".
In her article she states that she thought the Dr's in the show looked overworked and constantly on the run, so she decided to ask a few friends of hers if this were true. She actually asked 2 yeah ONLY 2 friends in the transplant field. So this makes her an expert on the importance of promoting organ donation? Much less gives her the authority to criticize a much needed series, that shows what these medical professionals really do to save lives? Oh yeah, and what about those of us who've lived through it? Are dying as I write this hoping for a life saving transplant!
I have steamed over this article for the last 2 days, and wanted to post a link here for you to read. However, if I do post a link it only gives her more readership and credibility, and I apologize that I refuse to do.
If you've had a transplant or are waiting you know first hand how hard our teams work for us. I've witnessed it 3 times now.
I remember waking up in ICU after my first bi-lateral lung transplant in Pittsburgh. It seemed that everyday my surgeon was wheeling in another patient fresh from a transplant. My first words to him after I was extubated(removed from the dreaded respirator) were, "I thank God I was your first in all this". Yes he looked exhausted, yes he needed a shave, but his exhaustion was one of reward. He saved lives.
My 2nd lung transplant, I remember asking Dr. Baz (Shands Gainesville, FL) to please take a day off! The day he came to see me in jeans and a pullover sweater, I knew it was his day off and told him to get out and relax!
These teams take people like me, dying, oxygen sats of 48%. blue fingers, blue circles under my eyes, and make us whole again. I was given a life I never dreamed could happen to me, thanks to my overworked (yes they are), under appreciated, surgeon, physician, coordinator, and nurses on the transplant team. And you know the best part?
THEY STILL CONTINUE TO DO IT!

This journalist, instead of dissing a new show could have made a higher impact by promoting the "message" of the show. Organ transplantation/donation does not have the platform of Breast cancer awareness, diabetes, heart disease. I'm not trying to demean these in anyway. Thank goodness they do have a platform, however we 2-nd timers would like a platform too, to save those waiting.
Only by promoting the meaning of Three Rivers can the message get out and help ease pain and grieving for donor families (they are finally honored for the heroes they are), and those waiting (we can give them hope to keep going), and us recipients (it's up to us to carry that torch to make sure the candidates get that chance too). Too many shows put little tidbits in a story line about transplantation with no follow through. What happens to the recipient later? What about the struggles to pay for meds? And heaven forbid, what if they get sick! How to afford that with our wonderful Medicare system, or private insurance?
Plus, the pitfalls of going back to work. That's a story in itself.
Here we have a show with follow through...... It's about us, for us, and we can relate to it. No tidbits, just solid promotion.

If she had checked further this journalist would have found a wonderful story to tell. How CBS partnered with DonateLife Hollywood to make the stories as real as possible (we know there has to be drama). Also how Alex O'Loughlin became a DonateLife spokesperson because the cause is so great. This is the line she should have taken. Then she would have made a great journalist, not just mediocre.

My reply to my friend Merv (he has a transplant blog too, check him out) MervSheppard.blogspot.com, "And she thinks she's an expert on transplantation? I'm still spreading the word to watch the show, give it great ratings and keep it on the air! We'll show her!"

12 Months

2009-09-27T07:15:00.000-07:00

What is the value of 12 months?
It equals one year of your life, right? How about when you hear you have 12 months to live? WOW a major shock runs through your brain and body. What? Time is so short? There isn't time left to do what I need to get done. TIME becomes a 4-letter word.
Knowing for about 12 years I would eventually hear those words did nothing to prepare me for when it actually happened. Much the same as if telling you about it would make it real for you. YOU have to live it to know it fully.
While living in Fort Lauderdale in the late 1980's, I drove to Hollywood, FL from Fort Lauderdale for a Dr. visit. It was here that I heard :
"We need to get you on a transplant list, you have about 12 moths left to live."
I was very brave and professional about it, did not cry or break down. No. Not me.
Even though every cell in my body wanted to scream. I was alone, my family living miles away in Jacksonville. I was the gypsy who traveled and lived her life like there was no tomorrow.
Now there wasn't.
Leaving the Dr's office, everything around me seemed surreal. Nothing mattered except my over-active emotions. My head was held high, until I got in my car.
I stayed relatively calm until I got on I-95 driving north to Fort Lauderdale. Realization hit,
the dam broke and feelings came rushing in. "Why me?" "Why couldn't You just let me die in my sleep and make it easy?" Subconsciously my mind was filled to capacity. Background thoughts of making arrangements (God, I'm only 28!), what will this do to mom & Dad?
I found that fine line between emotions and anger. I looked up to the sky and once again cried inside "Why me?" I was raised to NEVER question God, I may not like the answer.
From the corner of my left eye I saw a huge tractor trailer getting way too close to my car, crossing the white line. My vision was all blue, his cab was so close. It seemed inches away.
Instinctively I laid on the horn and searched for a way out. We were on an overpass and my only other option was the guard rail and over the side. In a flashing thought "Oh No! You listened and it'll end quickly but painfully!" The moment passed, the truck recovered and there was no accident.
I pulled over to the nearest break down lane I could get to and literally broke down.
I looked to the sky and calmly said " God, I'll NEVER question you again." Once again Mom was right. I didn't like the answer and I got my first of many attitude adjustments from God.
My emotion charged day was now calmer, thanks to an event that took me away from it for a brief moment.
Unlocking my apartment door, I threw my purse on the table and called the one person who I could talk to, my sister. I called her at work and gave her the news. We cried together, and she asked if I wanted her to tell my parents. No, this is my responsibility and it isn't something to tell them over the phone. I'll make arrangements to take time from work and drive up to Jacksonville and tell the family.
This was on a Friday. Two of my sisters Bev and Frances were at my apartment Saturday morning to be with me. The weight of the world was momentarily lifted when I saw family.
They made sure I had a wonderful weekend before driving to Jacksonville on Sunday afternoon to give my parents the news that would change all our lives forever.
I believe this is where the guilt feelings started because I felt like I was always hurting someone because I was sick and dying. I was causing such utter grief to others, not the person I wanted to be.

Silence is golden

2009-09-26T13:56:00.000-07:00

I realized this morning I've been lax on my updates.
I plan to change this now. I try to remind myself to sit down and make an entry each day, but get so busy.
First off, our computer is slower than cold molasses running uphill in January! A wonderful phrase my Mom used to say to me on school mornings.. Wow, how we become our parents over time.
Silence from a recipient or a candidate can mean one of two things. They are doing great, or they are doing terribly. One always wonders if they should call and find out, but human nature hates bad news. I've heard this many times over my lifetime. Take it from me, JUST CALL. Many times, especially with lung problems, it's easier to answer a phone call than to try and make one.
Physchologically it seems so energy consuming when you can't breathe. Plus the positive side is it will make that persons day.

My mom used to answer all my calls and if I could talk I would, if not well she is the bestest secretary in the universe. Nobody gets past Mom.

My last few weeks have been busier than usual. Clinic visits... Yeah good news... Now if I can keep it that way. I finally had students sign up for classes, and have been preparing for them and ordering suplies. Trying desperately to get my blood sugar under control.

Yes I am a diabetic. Mainly caused by Prednisone and Prograf. But I have to take the meds so I deal with the diabetes. I am a control freak about my blood sugar. This is one area of my health I can control and not have to leave in the hands of others. Being a recipient there are many facets of our health we cannot control, so when there is something I can control: I prefer to. My cholesterol is another are I can take control of.

Will post more soon. If you're a candidate waiting for a transplant- hang in there -it really does get better.
If your a recipient- get out there and enjoy the chance you've been given!

Medicare &Part D plans---massive chaos

2009-09-05T10:52:00.001-07:00

O.K. for today I need to get a little off track with my thoughts and vent, rant, whatever comes to mind about the anger I feel toward our government and how they run Medicare and Part D.
If you are an organ recipient you've felt some of my frustrations. My frustrations have been a monkey on my back for 29 years!
I've regularly sent so many letters to Congressmen, Senators, Governors and Presidents I know for a FACT they see my return address, grimace and recycle the letter unopened.
I had to wait the 6 months to receive Social Security Disability-twice-, waited the 2 years to get Medicare only to find out Medicare would not pay for my first double -lung transplant! Because it had to be performed simultaneously with open heart surgery. Medicare's loophole was the 2 surgeries had to be done separately. Gee my heart goes to our wonderful government politician who orchestrated that piece of legislation.
Now I'm falling into the issue (yet again) of prescription denials. Medicare Part B already covers a portion of Prograf and Cellcept-thankfully. If not, the cost alone would throw me into that BLACK HOLE of a coverage gap. Been there, done that, still trying to claw my way out financially from last year. (another thing to rant about). Now, however I'm having issues with Insulin. Yes insulin. This is my 3rd prescription denial in 2 weeks. I hope someone up there finally gets a clue that the "norm" does not apply to the chronically ill.
As many know long term use of Prednisone as well as Prograf can have the side effect of Diabetes. And after 18 years I feel I need something other than diet and exercise, control freak that I am when it comes to my health. My wonderful Endocrinologist has tried a few new products, and after much talking convinced me that the Pen was better for my use than the original vial and syringes. Me being the person I am , detest the thought of another syringe in my skin. After long term use of Procrit and giving the injections myself, feeling the burn and praying heavily for my kidney transplant, I count to 10 and then some trying to get up the nerve to give myself insulin.

Here's the clincher..... My Part D Provider approved the purchase of the pen needles. I had a few pen samples from my Dr., but they have DENIED the pen. So I'm now out the $30 I spent for the pen needles and constantly fighting the provider for the pen. My argument is:
They are both on the same tier, making them cost the same-so what's the big deal?
According to them you MUST give your self 3+ injections daily.. Yeah right, here comes the loophole. It's a long-acting 24 hour insulin. Who would be crazy enough to give themself more than one shot daily????? Yeah I use fast acting in between, are they going to deny this too?
I've asked these same questions in an appeal and to date have heard NOTHING.

I told family and friends years ago that Medicare and Social Security and NOT something you can depend on. Now you know too.

Time to write another letter to my Congressman announcing a new low for the disabled.
I think I'll fax this one instead..

Things we think about pre-transplant

2009-08-22T06:51:00.000-07:00

It seemed that my mind was in constant motion during my "wait" period.
It was at this time I discovered "wait" was a four letter word. Being on oxygen and at deaths door per se, thinking was all I could do. I had moved back in with my parents in Jacksonville mainly because I needed help, but I also needed a positive family influence to keep me going.
And my family exudes positiveness to the nth degree. I thank God constantly for blessing me with such a family.

I remember my Mom, God Bless her, would bring a cooler to my bedroom with a sandwich and drinks before she went to work. I was tied to an oxygen concentrator and the kitchen was too far to walk with no help. She also brought in all the crafts and books I wanted for the day.

Facing ones mortality at 28 years old is tough. It's tough for anyone, but I think more so when you're so young. You have to think about things you shouldn't have to worry about for another 40-50 years. How to disburse your estate..What estate? What could a person of 28 possibly have? ALOT, believe me. I bought a large Aluminum hurricane proof storage unit, had it delivered, tied down, electricity ran to it and my dad was going to put in an air conditioner. This held all my worldly possessions. The furniture I'd need to re-start my life post transplant among other items. I never contemplated that I wouldn't survive. It was just not an option. I planned for if I didn't, just in case. This unit still sits in Mom's backyard, now holding all her craft projects.

October 1, 1991
I'm thinking of making out a Living will at Dr. Chinoy's office. This is a really big dilemma for me, for in the living will I have to sign whether I want life support or not. If I end up in the hospital before the transplant, it will most likely be on life support (respirator). The only reason for this would be to keep my vital organs and lungs oxygenated while I wait for the transplant. If I state no life support, I can't get the respirator. BUT I don't want to be hospitalized indefinitely on a respirator.
If I do opt for the respirator, I'm afraid if I feel it's my time to go and ask for the plug to be pulled the courts/Dr. won't allow it to be done. Mainly because my mind will still be functional (I hope) and I'm asking to be freed. Not only this, I don't think my parents or family would have the strength to pull that plug. Especially if my mind is active and I'm alert.
If I am comatose it might be easier. I can only hope.

My last and most important wish would be: If I'm on life support for an extended period of time, and feel it's time to go Home that someone will have enough compassion for me to just turn the respirator off. I'm sure when it's time God will let me know.

When it happens, I pray someone will hold me in loving arms while freeing me from my medical bonds. My last breath will be whispering I love you to someone who's very special in my life.

I received my first lung transplant exactly 22 days later.
Facing your mortality is not easy, but it has to be done. We-none of us is immortal.
Talking it over with my parents did bring us closer, and we shared our wishes with each other regarding end of life.
My mom showed enormous courage in carrying out my Dad's wishes when it was his time. He did not want to be kept alive through force feeding.
In being selfish I can only say I'm glad it fell to her.
I celebrated my Daddy's freedom, but didn't have the strength to be the one to let him go.
I'll regret that forever.
How can I expect someone to have that strength for me, when I couldn't muster it for the most important man in my life?

Everything eventually comes flooding back

2009-08-14T05:16:00.000-07:00

I've been remiss in posting mainly because my little dog DB has started with a terrible cough.

We tried the old remedy recommended by the veterinarian to no avail. To no avail right... Have you ever tried to give a dog Robitussin??? I hate the stuff so I can only imagine how this poor little 10 lb. dog feels. I even went the gamet of getting childrens flavored!

So after a week of the cough calming down, he got worse. Me being the worrier I am, after all this is one of my boys. I took him back to the vet.

With all our exercise, walking and looking slim the vet found a significant heart murmur.......

Not only a heart murmur, fluid was backing up into his lungs causing the cough. When I heard this a flood of teenage memories flooded my consciousness all at once

Then the vet handed me 2 packs of meds. One was a heart pill and the other was Lasix. OMG! I looked at the dosage of 12.5 mg and said : "Wow, I only took 25mgs at the most at my worst times and he's only 10 lbs.." I was then told DB was in crisis mode and we had to prevent the fluid from leaving his lungs and going into his heart.

Another flood... a major one... My sweet, little, holy terror was suffering from some of the complications I had endured for many years!

I then and there made a promise to God. I will spoil my little one even more, I will be protective, I will also give equal time to my other 2, and I will NOT lose my little Dibs.

Our walks are much slower now. This is difficult for me as thanks to Prednisone I run on Hyper mode constantly. We used to walk at around 2.5-3 mph. Now we meander and sniff every blade of grass and let the other brothers chase squirrels and lizards, and when he starts lagging behind and breathing heavy, he lets me know it's time for a ride in my arms.

Carrying him can be a major feat in itself while trying to control 2 other holy terrors!

A fellow crafter makes slings to carry babies with. She will be my next email. He will receive his very own custom designed carry all sling for walks.

Since the vet says this will only get worse, he deserves the best.

Memories like these hit us at the most unbelieveable times. We accept them, because they made us the survivors we are today. We learn from them, and they help us to help others facing the same crisis in their lives. I just never thought I would be helping my dog.

What are some of your memories???

Jerry Dinnan

2009-08-05T06:45:00.001-07:00

This morning I want to tell you about Jerry. I never got the chance to know him other than the volunteer work we did together at LifeLink, but that doesn't matter. You see, there is a special "kin-ship" between recipients and candidates for an organ transplant.

When I first met Jerry a few years ago we had volunteered to promote donor awareness in Sarasota. We both arrived wearing the same color Lifelink polo shirts and khaki pants as if we'd planned it. As the day progressed we discovered we lived a block away from each other! He was the light shining on the health fair. We joked, talked to others about becoming an organ donor, and wanted to hug all those who said they were already a donor.

The next time I saw Jerry was at a Donor Service of Remembrance held each November at the church he attends. Lifelink brought in donor families from the past/previous years for the donor and their families to be honored. It was at this service I realized deep inside how much I needed to thank a donor family and help some of these families understand how thankful all recipients are for what they have sacrificed.

This blog has taken me a few days to put together. Mainly because as a recipient I and many like me view all candidates & recipients as "family". We have scars, take the same meds, have the same side effects, etc. BUT mos of all we *strive to thrive* with all the daily obstacles, the medical obstacles, and honor our gift of life. When I hear of a candidate of recipient passing away, I not only grieve for the loss of their life and for their family. I grieve because a part of me goes with them. I know the daily struggle and strength each and everyone of us puts forth each second of every day to prove transplantation works. The loss is double. I've lost a friend, extended family member, and fellow kinsman who understands my thoughts without having to explain the medical aspects in detail. Or from the beginning.

Here is part of an email from Lifelink regarding Jerry.
You'll see why he is sorely missed.
I am very sad to inform you that LifeLink volunteer, Jerry Dinnan passed away last Thursday morning. For those of you who knew him you may recall, Jerry was a heart transplant recipient of nine years, was a passionate advocate for organ and tissue donation which few could rival. He was an active LifeLink volunteer, and led the good work of a support group - Transplant Recipients of Southwest Florida – in Ft. Myers. Jerry never turned down a chance to spread the important message of donation – and he touched countless lives by participating in every opportunity presented, including high school presentations, media interviews and other speaking opportunities.
Jerry was incredibly grateful for the gift of life he had been given by an organ donor, and he carried wonderful thoughts of his donor and donor family with him always. As a result, Jerry felt one of his most important roles was as facilitator of LifeLink Services of Remembrance, speaking from his heart to families from throughout West and Southwest Florida whose loved ones had become organ or tissue donors.
Even with his many responsibilities to the transplant community, Jerry found time to be an active member of his local church and a Hospice volunteer, ministering to families and individuals facing end of life issues. Jerry was a beloved husband to his wife, Debbie, for many years, and leaves behind four children, several grandchildren and many friends, who will all miss him dearly.

If you find a few spare minutes this Saturday morning (his services) please look up, smile and say hello to Jerry. He's earned his wings over and over...

Memories

2009-07-31T09:01:00.000-07:00

I can still recall how my life transpired from 17- about 25. Before the ADA (Americans with Disabilities Act) anyone with a disability feared applying for a job. Even worse you were afraid to admit you had any form of medical issues. There were organizations that employed ONLY the disabled, so I tried one of those for a few months. It only took a few months long to realize:
1. I was not that disabled.
2. I would never achieve the few dreams I had left.
Sitting in a bare office, trying to tele-market light bulbs was not for me. It was great for those who truly needed it . Just not me. I guess this is why to this day I'm on the Do Not Call List.
I decided to try finding a job in my chosen field at that time: medical.
I went back to school and became a Medical Assistant, but symptoms began to show and it was difficult maintaining the low-pay, hectic office where I was at the time.
So I went back to work at the hospital and became a Pharmacy Technician. It was a slower pace, I was not in the public arena where germs ran rampant, and I had found my niche. For awhile.
I eventually took a job with the county health department which afforded me better benefits. It was at this point I began asking what the benefits were as opposed to negotiating a salary. I could always get a 2nd job to cover bills, BUT good health insurance coverage was mandatory.
It was also around this time I began to cough up blood. I think my cardiologist, David Chinoy MD (at the time) was going to have a coronary himself when I casually mentioned it during a visit.
I was quickly informed this was a major red flag!
From what I remember: the pressure gets so high in my heart and lungs that the arteries were bursting and I was coughing up fresh blood. He scared me to death when he mentioned I could eventually hemorrhage (?). I was also quickly becoming a CHF (congestive heart failure) patient with all the fluid build up happening in my heart. I still wonder to this day if he was doing this mainly to scare me into behaving. After all I was only in my early 20's and rebelling.
My rebellion is another story all in owns right, which I'll attempt on my next writing. Until then stay safe, stay healthy, and please don't be like I was -Listen to your doctor. After all it's your money you give them for your care.

Remembering Daddy

2009-07-27T14:21:00.000-07:00

I've been absent from blogging for the past few days due to severe thunderstorms, but mainly because I was attempting to finish designing a Christmas ornament or Celebration.

My daddy passed away in 2005. Each year the funeral home holds a celebration on life around Christmas with each family placing an ornament on the tree in remembrance. Each year a new ornament is added along with ornaments from previous years.
This year is my turn to make the ornament.
This has taken much thought, mainly because :
1. I was Daddy's girl
2. I miss him more each and every day.
3. I wanted to honor him in the best way I knew how.
Here is the ornament I was finally able to finish....after much crying each time I tried to work on it.
Inside the card reads:
His favorite color-
Like his smiling eyes is blue
His heart-
Made of pure gold
His Faith- Unshakable
He placed everything in God's hands
His family-
Fragile and precious , like the finest crystal
The work on this piece- imperfect
Just like his "baby girl"
Loving husband, son, brother, uncle, grandpa, and even
a great...BUT
The most wonderful Daddy in the world
God truly broke the mold when he created you.
You are missed more with each passing day.
We Love you.

Just a reminder we all have to deal with difficult times. My daddy was there with me during my first 2 organ transplants. He was too ill to be with me for my kidney transplant. I made it through thoughts of previous transplants and him being with me, laughing. When I was discharged from the hospital to go home, he was admitted ( in a different city). I stressed if I would get to see him before he died and finally decided they could have my kidney-I HAD to see daddy again. He'd given me so much my entire life. I did see him in the nursing home a few weeks post transplant, he didn't know me. He died peacefuly in his sleep later that night. Immediately following his death I celebrated his life while others mourned his passing. My daddy was now free of hospitals, medicines, and being weak. Just as I've wanted to be my entire life. He was now whole again, enjoying that pair of wings he'd earned. Now is when I miss him, I mourn him, and I cry each time I think of his smiling face. His strength lives in me, I can survive. But oh how I wish I could have a daddy smile and hug.....

The story about "Pennies from heaven" is true. Each time I see a coin lying on the ground. I pick it up. Look to the clouds and say" Hi Daddy, I love you too."

Hearing the diagnosis for the first time

2009-07-24T12:41:00.000-07:00

Wow! let me see this day was so long ago for me, but I can still remember parts of the day as if it were yesterday.
I was 17 and 2 months out of high school. (Yeah a lllooonnnnggg time ago) It was the end of July to be exact. I'd already started college in the summer, but decided I wanted to join the Navy. You know, follow in Dads footsteps. I wanted to be stationed aboard ship -a medical ship. I've always said I was born in the wrong era, I should've been a pirate. Swinging from the yard arm and brandishing a sword... That's me.
Anyway, back to the story, the recruiter told me women were not allowed aboard ship yet. (Yes I said it was a long time ago), however I did have enough college credits to join as a commissioned officer-plus my AFEEs test scores were high enough that I could be in Intelligence. WOW Intelligence! My vision did an about face and I now envisioned myself a spy. Black trench coat, dark RayBan sunglasses, stiletto heels, working under cover. What a life!
I only had to pass the physical........... Seven words, one sentence, that could have destroyed my life.
On physical day I was ready to sign on the dotted line. An X-ray showed an enlarged pulmonary artery. I was sent to a cardiologist to find out if I could make it through boot camp and join the Navy.
My Mom and an old long lost boyfriend met me at the cardiologists office. The words Mom and me heard still break my heart but are blurry. I had an Atrial Septal Defect (hole in the atrial chambers) in my heart and it was aggravating Pulmonary Hypertension. I was bluntly told I was lucky to have lived this long. Longer than predicted for those with this disease. The next words were "You'll be lucky to reach the age of 20, and you will NEVER have children."
Those grand visions I had of a great new life and world did a major crash and burn.
To make matters worse, after returning to the waiting room that long lost boyfriend pointed to a little girl and said "We'll have a girl just like you in a few years." Major crash and burn!

I rarely cried in front of my parents, but at this I completely lost it. I realize he had no idea, but it didn't stop the pain I felt. Being raised in a large family and feeling that children are our future and a Privilege- my world STOPPED.

The Navy still wanted me I found out, but there was no way to get me out of boot camp, so here I was: young, ready to change the world with no way to do it.

My parents were advised to get any necessary surgeries done before I was no longer on their insurance, but to also give me a little time to adjust to the news. We took a 2 month long vacation out west. Daddy customized their Chevy Van (yeah like the song). We had electricity, double bed, sinlge bed that also converted to a table, and headed out.
It was great for me except for visiting Pike's Peak. We went over the altitude I was told to stop at. I didn't know my daddy could drive so fast trying to get me down the mountain when I got sick. The result was a week long headache, saw The Grand Canyon from the van window, and learned a valuable lesson. Do what the doctor tells you to. Though I admit it took alot of tries and many gray hair on my parents heads for me to come to this comclusion.

Welcoming a new day & ready to fight

2009-07-22T07:01:00.000-07:00

Well I've done my morning routine medically speaking, walked our boys and now time to work on websites and web stores. I uploaded a link to my Etsy store, please give me feedback with any suggestions.
This morning I'm fuming about an article in the morning newspaper regarding our "NEW" healthcare reform. Apparently the "healthy" politicians don't think home health care is necessary anymore. Home health care is to be deleted from Medicare to help fund the new Universal healthcare for America. And just added into this healthcare plan is tax funding for abortions. I apologize in advance, but I've always felt that abortion is not a form of birth control. It has it's place, but not at the expense of the elderly and disabled.
I've written letters for the past 20 years about the lunacy of Medicare as it applies to the disabled. Now I have another reason to get on my soapbox today. I've fought for Medicare to help pay for home IV infusion supplies to no avail. Until the implementation of Part D (another joke) we had to pay for our IV meds as well. Now the only difference being the cost puts us in the coverage gap (black hole) and we pay full price anyway.

With regard to home health care, I prefer to do my own care without a nurse. I do my own dressing changes as well as IV infusion. I personally don't need anyone to take my blood pressure, heart rate, and temp another time since I already do it twice a day. And I certainly do NOT want to wait until they fit me into their schedule for the day. Add to all this: the only way Medicare will pay for home health care is if I am bed-ridden! Get real -another loophole for our government to not pay. Many who are disabled since childhood are NOT bed-ridden even though we need those IV's. Our IV site may be in a place where we cannot change the dressing, and we need assistance.
Regarding the retirees and disabled facing the end of their earthly time, then YES,YES,YES give them the comfort of home health care. Our healthy politicians must realize (and they will when finally facing their mortality) that shaky hands and weak legs MUST have assistance.
Try checking your blood sugar or giving yourself insulin when your so weak you can hardly hold the needle much less stick it in your stomach!
Another morning of writing emails, letters,and sending follow up faxes to my congressman and senators. I hope you will do the same. We need to stand together and show them we are a majority. If Universal healthcare is so great-let them join us in the program and drop the great healthcare plan they have now.

2009-07-16T09:16:00.000-07:00

Patches

She wakes each day with a smile, feeling Blessed.
The everyday routine means she’s still alive.

She smiles and feels as cleansed as the earth with each rain.
After all, God is laughing at our antics so hard he’s crying.

Each morning she checks her temperature, heart rate, blood
Pressure, and weight.
And then again in the evening as well.
This is her daily routine.

She tests her blood sugar, takes her insulin and Aranesp.
She also takes 2 hands full of pills each morning.
Then another handful before bed.

She faces the normal daily obstacles we all do.
And a few extra thrown in to test her character.

She cooks, cleans, mops floors, and walks her little dogs.
She calls her family and worries about her parents.

She misses her husband terribly when he’s away.
He is her soul mate, the one true love of her life.

Most of the day is spent on the phone with insurance companies,
Hospitals, and doctor offices. If she isn’t sick,
She’s trying to straighten out another bill.

She had to give up her dream to be a psychologist,
But she volunteers helping others get their meds free.

She writes newsletters to inform other patients, runs a small website to inform and encourage.

She lives life to the fullest she possibly can.
She truly knows just how short it really is.

If not for surgeries, she’d have no scars on her body.
But the ones she has, she wears with pride.

After all she had to die to get them.

1991. A scar down the center of her chest. Open heart surgery and
A bi-lateral lung transplant.

2002. The scar circling her left shoulder on her back.
A single lung transplant.

2004. A scar stretching from under her right arm to below
Her elbow. Vascular surgery for dialysis.

2005. The scar on her right side stretching from her navel to
Her groin. A right kidney transplant.
A broken heart at losing her Daddy.

2006. Two separate scars. On her left shoulder a small scar hides
A box. A pacemaker.
Six tiny points on her right thigh.
Ablation therapy for AV reentrant Tachycardia.

And 3 weeks later she competed in the US Transplant Games.
The 5K no less.

2008. A new scar tops the old scar on her right arm.
Removal of the vein for dialysis-a blood clot.

She can remember many holidays in the hospital.
But she understands.

This is the cross she is given to bear.

With each new diagnosis, she laughs and says
“Just another day at the office.”

She is a career recipient.

She doesn’t worry about wrinkles.

She is the extreme makeover.

Her mission in life;
To make sure all the other candidates after her
Get the same chance she has.

She jokingly says she understands how Frankenstein felt.

She is the Patchwork Sister.