Another Day At The Office

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

     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

      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

     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

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

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

       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?

     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???

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

    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 !!!!!

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?

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

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

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?

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

       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.

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

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?

    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.

 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...?