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.