Comfort Zones

We all have them. Those places and people that we know we can trust with our lives. They know us there. They support us and often literally keep us alive.

This is extremely true for transplant recipients. Our Transplant Centers are our Comfort Zones. for many of us, this is where we found the physicians that have ever been able to answer our questions about our diagnosis.  I remember my first trip to University of Pittsburgh. I searched 28 years for answers to what my diagnosis actually was, and the cause.  Then as if by magic, I was overwhelmed with answers ! And the Coordinators- oh my ! if all health care staff could be just like them.  They were caring , positive, and so friendly.

Great flash back... and you know, even now at a different transplant center, this remains true.  We as patients literally put our lives and well being into their hands. No other doctors office runs like these do.  We talk to a live person, we get call backs, we get answers AND we do not have to wait 48 hours!  Many times I have said, "I wish all offices could be like my center."

I am currently in a concerning dilemma.
I sense the chronic rejection/infection from my right lung has sneakily taken up residence in my left lung.  Now this devious organ has tried this before, many times.  We try to catch it early and make it move back home.  Let me give you a little history here. The right lung is from a double lung transplant almost 26 years ago (I know, Yay me !) while the left lung was re-transplanted at Shands Hospital almost 15 years ago (again Go Me !!). I am known for doing all possible to stay away from hospital admissions.

Through the years my transplant coordinator has always known that if I call and say there is an issue, we jump right on it.  We've shared many hospital admissions that took me years to get my strength and endurance back, and neither of us want a repeat.  Bette, happy and medically managed healthy is a wondrous thing to be !

I've noticed my cough ( part of right lung chronic rejection, and as Heddi would say "A real Bugger") has gotten more prominent. Pain in my right side tells me it's on the move. Pain on my left side screams "Get it out !"  My cough can be loose (preferably) or tight to the point of choking me (not fun). When you are woken up at 3AM choking and cannot get air in to make ANYTHING move- it is NOT a good thing. Both sides ache from muscles being strained to unbelievable levels. Been there. done that. Sadly it will happen again many times in my life.  My friends know, my biggest fear is suffocating, alone and no help.

This is where I am now.  Plus temperatures off and on  for the last 3 weeks.  Now comes the inevitable, walking across the room and I am struggling to breathe. This is NOT the Bette, who was walking and climbing in Maine just a few months ago ! This is NOT the Bette I want to be !
I coughed/ choked so long and hard on Sunday morning I went into A-Fib- today is Tuesday and I am still trying to get my heart rate back to normal.  I will, if not my cardiologist will bring me in and there is an IV that works - just an annoyance is all.

Now the real concern... There is not one physician or coordinator who remembers my past history. They are all NEW !  I was called in a prescription for Levacquin, 1 tablet a day for 7 days. Ha ! I laughed hysterically.. I know it has to be knocked out and fast. This infection will shore up the tower, bring out the seige enginges and merely enjoy the little attack on it's defenses. Plus, I cannot take it. Levacquin causes a prolonged QT wave in your heart. I already have that, plus it does not play nice with my heart medication Multaq. I had open heart surgery with the double lung transplant instead of a heart transplant as well.

I called up Monday and asked if there was availability for a Wednesday visit.  They were full & overbooked. Now, under different circumstances, this infection would have been long moved back to it's home with me being treated like we normally do.  Heavy duty antibiotics called in & if I don't feel better within 14 days, a visit to start IV meds.  I have repeated my history multiple times. I wonder if they are tired of hearing  "This is what Dr. Baz always did for me and it worked ?"  Maybe I should change it to Dr. Baz, Dr. Akindipe & Dr. Salgado ? In my defense, my previous physicians proved to me time and time again- they would keep me alive.  Those transplant coordinators deserve a universe of praise as well ! I admit, when I'm sick, I want to get well NOW.  I had all these transplants to embrace life and this is merely an interference with me getting on with life.
I guess what I'm saying is, after trial and error we found what works for me. I don't really want to go through trial and error again. Is it too much to ask, to have a physician who KNOWS me and a coordinator as well.

During this phone call, I spoke with Rita the transplant assistant. When I mentioned coming up, her response was, "You're one of our strongest patients, when you call we know you are serious." My response: "I know! right! You're the only one there who remotely remembers my history."  I did get an appointment, with a promise that I will be given nothing unless in conjunction with my Cardiologist approval. As long as he knows, and we are proactive, I'm OK with it.

My suggestion for hiring coordinators. Let's not look at qualifications, but more at longevity. My coordinator in Pittsburgh is still there 26 years later. How comforting that is. My original coordinator  at Shands, I had for many years & was heartbroken to lose her as well as my physician (happily married with gorgeous kids), but there was a long period of transition to Sonja. Sonja was moved to pre-transplant after a few years and I got Chad who after 2 visits took a promotion and I got Sherrie. I just barely knew her and she left. After a few talks with Ashley-Marie my new coordinator, she is trying her best to know me and be my advocate. I only hope she stays for a long time.. The foundation of my comfort zone has shaken just like out recent Hurricane. This appointment will be stressful as I fight for what I know I need from years of experience, as well as try to not bring up physicians of the past.

Safe to say, I will get through this. I am not ready to check out yet, even with continual coughing for 5 years and lack of sleep from said coughing.. This is still my life and I intend to check out when I am ready. My goal to be back in Maine next summer and walking those inclines again !  Oh, and the lobster and Haddock are a great enticement too   :)

Be safe... Be a Donor.... Lives depend on you .

Finally News I can Smile About !

As I mentioned in a previous blog post, I've been bleeding internally since 2013, in 2014 we found it was from my right lung. Yeah the bad one from my 1st transplant 24 years ago..
I guess after all this time, it has a right to protest the captivity :)

While my transplant team also sent me home in 2014 with the statement, there's really nothing more we can do, and I accepted it to a degree, I also decided this was my fight.  That being said after 3 long years of becoming thoroughly exhausted from that long 3.5 hour one way drive to Shands and waking at 2AM to do the drive......  My PFTs  have risen !!!  My lung function is better, not where I'd love it to be,but better. We lungers will happily take any good news we can get..I watched as  my lung function has steadily declined over the past years but three months ago it stabilized...   Insert brief hope here :)

This visit they are up a bit ! I'm feeling better, not where I would like to be , but enough to get housework, yard work, etc done at my own pace without massive fatigue and continual naps.
Ozzi may not be happy with me skipping an afternoon nap here and there, but I will certainly  make it up to him somehow.

I have stopped all nebulizers. The excruciating ear pain causing the worst case scenario of vertigo imaginable brought on that decision.  It will also save me close to $400 a month. I know I will go back on it sometime soon,, just not now. I also recognize that the summer months June, July & August are my "magical" months.. You know, the ones where I end up in the hospital and have to claw my way out. I am preparing for those months, and this year am determined they will be my friend- no hospital.After all, what is 3 measley months out of 12 anyway?

We transplant patients don't "bounce back" like healthy folks, mine took 3 years..

All my other issues are still with me, but this I had to shout. I have worked hard for this glimmer and I intend to celebrate !

Oh, and the best yet ! Kidney and Lung Transplant told me, they didn't know what I was doing- just KEEP DOING IT ...


Be someone's Miracle- Become and Organ and Tissue Donor

Managing My Time

My agenda starts as soon as I wake up..
Most cannot fathom all that is involved with the regimen we follow as well as everyday life.

Add into that taking a Thyroid pill and waiting an hour before you can eat or drink anything besides water, getting my day started is jumbled. Depending on how I feel also denotes how fast I move.

I want to strengthen my lungs and increase my energy a bit more, so I usually walk my Treadmill after my nebulizer to get rid of the jittery shakes from the meds.. My body is good for very little while shaking so bad. Now the Plantar Fasciitis is rearing it's ugly head, my feet are extremely painful within a few hours of walking. Pair this with the fact that Ozzi now prefers a  car ride to walking, and Bette gets less exercise. He is 13 now and slowing down , regrettably. My hope has been to spend 15 minutes on the Treadmill after each meal. I can skip breakfast if I convince Ozzi to walk.

Now that hubby is retired, or partially fitting in time for a nebulizer is difficult.  I can't do it while he is sleeping, it is one noisy machine and he seems raring to go once he has breakfast. He is a man of lists and plans out what he wants to do the day before. After 11 years, I still have not gotten through that thick New England skull to chek on my list too :)  Or my routine.

Today we decided to try an experiment.

Only he was up earlier than I planned...

I had taken my pill and was chugging water when he woke up.  So instead of the treadmill, after breakfast we took Ozzi for a ride, and a walk in a different area.. Completely new dog ! He's apparently bored with the old routes..
I did notice it getting more difficult to breathe at the end of the walk, so couldn't wait for the nebulizer to open everything up and then the antibiotics.  Hubby had different plans..
We then went to the Produce stand and bought fresh vegetables.. I love the tomatoes this time of year so happily agreed..Knowing in the back of my mind the nebulizer awaited.
Then it was a stop at PetSuperMarket just because- Ozzi had been so good ! Then gas for the vehicle and finally home.. Yay- nebulizer time !

Hubby wanted lunch before he cleaned the cars...

With all this scrambling in my head, I made lunch. Wondering how on earth I will fit in that nebulizer, ride my stationery bike ( over the treadmill) and complete the ring and pendant order sitting at on my table screaming at me.

Solution!!!!!
I put a small table by the bike (recumbent) with the nebulizer. With my meds ready, water bottle in hand and a good book, I proceeded to hit my 15 minutes or 2 miles.
I'm thinking I may keep it this way... Two projects with one stone..

Here I have to mention,. it is imperative to have a good book to read..  I am reading Between Before And After  by Amanda Dick. I highly recommend it ! I actually kept riding  so I had an excuse to keep reading the chapter I was on !!  This is her second book I've read and both are well worth the time.. She is about to release her third and I cannot wait !!  She can easily be found on Amazon for you Kindle or Kindle App.

So now with jitters gone, and fully recharged...thank you Amanda for keeping me exercising, I leave you to begin designing those orders  :)

The Grand Adventures of Oz.

Many of you already know Oz. For those who do not, Oz is the last of my 3 boys.
we lost Dibs in February 2 years ago, his brother CC in March of this year. Oz is our Skye Terrier who after being dropped off at my house at 8 weeks- rescued me.

After losing CC, a deal was made with Ozzi. He will be our only dog , as long as he promises to live forever :)

Since he is now 13 and greying, and I decided to start working on my Bucket List again. I thought , how about we check items off together !

Without further ado.... may I present Ozzi.

Oz here....
Mom & Dad are taking me everywhere ! Being the only dog has it's  advantages.  It was great having Dibs & CC around for fun and blaming each other when we dug up the yard... but like Mom says...
It's Good To Be The King!

We're off in the Motorhome, my first time without my brothers. We had mechanical issues -again- but no blown tires on the highway... yay ! We left the 1st campground in a hurry... yuck... but now are in a great place on a lake with lots of ducks!!!

Today was my 1st trip to a Flea Market. I walked with my tail high acting like I owned the place.  Mom kept telling me to slow down, but I wanted to sniff everything! I have to remember Mom can't catch her breath like when we walked 3-4 miles every morning. But this was her 1st trip to a place like this in a long time too.

Then we rode the highway looking for a place for lunch. Dad said it had to have outside seating so I could go to.. they love me soooo much. Yay for Firehouse  Subs!

Mom is always sharing her meals with me.  Don't tell Dad,but I take her to lunch when he's  working...lol. Back in the car and headed back to our motor home,I heard Mom say they wore me out !  I'm  gonna let Em think that until I get out of the car.
Tonight Gracie & Ashton will be flying in ! I really love the girls !

Tomorrow we drive out for a new grand adventure. ...

Ozzi out fur now ...

Acceptance -OR How To Survive In This Crazy World

      Over the last few months I've read many posts on Social Media about others health issues, life struggles, etc.  It pains me to "feel" the heartache I sense coming through their words. I met a sweet lady, newly to the possible transplanted community recently, she stated she just finished reading my blog and wasn't sure if she could go through all I have.
     First, let me say ....  Not everyone will go through all I have. With the advances in medicine today, many will soar through their health issues with flying colors. I have met some of these new trail blazers and they warm my heart. Those of us with more than 15 years behind us (24 here) were the trail blazers of our day too. We helped spark that debate of, "What makes them thrive?"  How does patient A live for 20 years with a transplant, while patient B rejects within 2 years?

     I believe it can be summed up into two words: Acceptance and Overcome
Let's look at acceptance.
I accepted in 1977, I may not live to see 20 years old... I overcame it.
I accepted that in late 1989, I was given 12 months to live... Back then a physician had to give you this "death sentence" for  you to be listed for a transplant.. I overcame it. On that 365th day I woke to a sense of , "is this my last"  then I thought NO it will not be.
I accepted when my transplant team told me, this could be the last few years of my life- go enjoy it.
I cried over things I  may never see again: the wind in the Palm Trees, the ocean, etc. BUT I overcame it by NOT falling into a mind trap of doing this everyday.  I gave my "crying time" a priority of one hour once a month. The rest was devoted to my life. Each month I took my "woe is me" box from the shelf, opened it, had a good cry, closed it- and continued my life.

Just before Y2K, I was told I had chronic rejection. I was floored. Back then, it was a death sentence to us all. I cried for a few hours, then hit the Internet.. I researched, I read, and I researched more. My team gave me a game plan of what needed to be done. I accepted it. This game plan was my light at the end of the tunnel. It was rough.. It took all the strength and will power I had in me. BUT I DID IT! I learned I am stronger than I ever imagined, and more importantly I learned how to draw on that strength. We stopped the rejection... but...

I was refused a 2nd transplant....

I did not get depressed- I went into action. I contacted EVERY lung transplant center in the nation - and some were not so nice to me either. I found one who would evaluate me !  My new center saw a determination in me that my first one did not. I did everything that was asked of me.Limited breathing capacity, on oxygen (again), and knowing I would need a new kidney after my lungs were re-transplanted. Each time I was rushed in to the hospital, my Dr would give me a game plan of what needed to be done, I would reply "OK" . He knew beyond a shadow of a doubt, I was in 150%. I never asked how I would feel, if it would hurt, just "when can we start".
I overcame... I got my new lung, and stayed on a respirator for an additional week to give my kidneys a rest.
My next Acceptance was needing a kidney transplant.  I did all they asked- except - accept that I would need dialysis. I researched...  I had 3 pages of food to avoid that I created. Orange highlights had Potassium, Pink had phosphorus and green had both. I severely restricted my diet- never got dialysis... I overcame.. The thought of a 16 gauge needle in my arm gave me all the determination I needed.
If you have read most of my blog, you will remember that last year 2014 was not a good year for me. My right lung from the original transplant is becoming a little bothersome. My transplant team basically sent me home with the statement, there is nothing more we can do.  I took this as being sent home to die. That is NOT being depressed. That is a call to action!  Within 3 months I was back to my original strength, walking twice a day, swimming, and enjoying life within my boundaries. I asked one of my team if they had any idea of how long I had. I secretly wanted to prove them wrong :)  He replied with anyone else I would estimate- you- we have no idea. That made my day !

I accepted this too... And I am overcoming it.

I have recently lost another beloved pet.. My Toy Fox Terrier CC (Capt Chaos) has left me. The loss of both "boys" has been hard. Dibs was due to an enlarged heart and CC to kidney failure. Both of which I can relate to.  I still have my Ozzi with me. Though we have a deal- he will live forever as long as he is the only dog. You see, he thinks it's good being the king :)

This is not to say my life is all peaches and roses. I have a new regimen I follow to keep my right lung from affecting my left. I know I can still exercise, Dr. Baz taught me that when I was dying for a lung transplant. I can surely do it now. As my right lung wastes away, I can make sure the rest of me stays as healthy as possible. I will not give in ! That is not in my chemical, physical, or mental make up. It is not a fun journey at times, but it is still my journey to live. I intend to make it a grand adventure !

I have stated many times in my life, I CANNOT AFFORD THE LUXURY OF A NEGATIVE THOUGHT.   This is more true than you will ever know, and has kept me from depression.

So... Accept and Overcome.. No matter what you face in life.. If you are diagnosed with Diabetes, Heart disease, or any other ailment- Accept it Now. So you can Overcome it and triumph ! For to not accept can only lead to more health issues down the road.

I would like to take a moment and thank Maher Baz MD for all he taught me through his time as my transplant physician. It is the inner strength, he showed me I had, that I now draw on. I think back to his teaching during the wait for my 2nd lung transplant and the quiet confidence I felt he had for me to overcome. I will always attribute my life and how I choose to overcome my obstacles to him.

Wishes And Blessings

     How many times have we all wished for something ordinary.
"I wish the dishes were done before I get home. "  Or "I wish for a bit of quiet" .  Now,  remember how great it was, when it actually happened ? The utter bliss if sinking into that steamy bubble bath, your favorite music and no one home to interrupt.

That is me this morning.

    As many of you know,  my cough keeps me awake both day and night so naps are rarely achieved with rest.  Couple that with 4 pillows in a vain effort to NOT cough, and deep, refreshing sleep is elusive.  Having a desire to sleep on your back is One thing,  being forced to is another.  Attempting to sleep sitting straight up one invariably awakens with the malady "tingly butt".

Among my simple wishes , topping the list are:
1.  A refreshing nights sleep with no cough.
2. The utter bliss of sleeping with one pillow.

I have many simple wishes,  but sleep has to top the list.  Sleep refreshes us in mind, body and spirit.

Last night for the first time in a few years, my 2 simple wishes came true!  Three pillows on the floor and my head on only one. And *insert drum roll* no cough ! I know it will rear its ugly self after I drink my coffee,  but I intend to wallow in my good fortune for as long as possible.  Oh! And I forgot the best part!  I got up at 5AM, went back to bed and unbelievably went back to sleep until 7A.M. this is amazing in my life.

I know this burst of energy will dissipate as the morning moves on, but it's so nice to wake up feeling rested and ready to tackle the world.   Finally... :-)


Have a refreshed day and don't take your simple pleasures for granted.   ♥

Decisions

After receiving disheartening news in December, I posted the news on Facebook.
It seemed ironic that I normally go to my clinic visits feeling uncertain, only to hear how well I'm doing.  This time I was feeling great, and got a less than favorable prognosis.

Lung transplant dropped the chronic rejection bomb, while I discovered  my paperwork also showed stage 2 kidney disease from kidney transplant.

After posting my thoughts on FB,  I got many responses.  Most encouraging my determination to do this on my terms.
However, I think one read it incorrectly.  tge response was "I've been in stage 3 for years".  Replying about a lung transplant
It was stage 2 kidney disease,  scary in itself being a kidney recipient.

However a first time lung transplant has the possibility of being relisted.  Me,  having had 2 already my chance  is next to nil for another.
I'm not being nit picky,  merely to set the record straight.  I remember my years of chronic rejection, and the fast downward spiral.  I have no wish to go there again,  though I knew it would one day happen  I don't miss the nose wedgies and bloody noses from oxygen.  My wheelchair has been in solitary confinement gathering dust .I have no desire to grant it visitation rights to my derrière.

Mostly, I do not miss the shortness of breath when talking. Being forced to decide between eating and breathing.

Or the realization that my life is slipping away.  It is pure hell having an active mind in a daily weakening body.

Which is why I posted my life on my terms.
I am slowly rebuilding my endurance,  no small feat with a negative reserve of energy. Let alone the breath.

I'm walking more and have taken to my bicycle in the hope of keeping my wheelchair in solitary confinement.

Sooner Than Expected

1:30AM and the morning person is up earlier than she'd like to be.

One of the protocols at my transplant center is if your temperature is 100 or above they must be called.  As I looked at the thermometer yesterday in trepidation I knew what I had to do. The cough is wreaking havoc and the temperature is up, sinking feeling in the pit of my stomach I picked up the phone.

It's times like this I'm quickly reminded I am not a normal healthy person,  something a chronically ill or physically disabled person longs to be with every fiber of their being.  In day to day life, I can sometimes push it to the back of my memory,  to be hidden far away from reality.

During the call I was given the choice of coming to the hospital or starting antibiotics again.  With it being a 4 hr drive one way, I seriously did not feel well enough to drive and Larry was at work. I chose the antibiotics,  though a hospital stay and giving this Pseudomonas a strong kick to the curb is appealing.  So I waited all day, not that I felt like going anywhere, meds delivered, nurse accessed my port -here I go again.

With this happening more frequently I can't help but wonder if this is the start of "the long painful road home ". I vividly remember the first time I started that journey.  Many times I said, " chronic rejection was leagues worse than my original disease. Not that I have chronic rejection again, but one bad lung can make life miserable at times. With PPH I was short of breath, now I can't stop this painful deep cough.  I'm reminded of a scene in "The YaYa Sisterhood" where a line is " you made me think I was gonna cough up a lung " I was offended by it and they way they parodied those on oxygen,  but it's the one line I seem to remember.


I still have to make that long drive on Monday,  with an overnight bag just in case. (I haven't had to do that in 8 years!)
Fingers crossed,  no admission.
Drat! I forgot to ask if I could take Tylenol!

Updates and Decisions

well.. the picc line was taken out and a Port now rests (cattywompus) on the right side of my chest.  I have to get it flushed monthly. Our great Medicare system does not cover it, so my cost is $90 .
In anger I researched this and found the needle sells to these companies for $5.60  each.. Makes ya sick doesn't it?

Then  with the hemorrhage in  my left eye getting worse, I needed a shot to try and save my vision. When the Retina Specialist told me my co-pay for the shot was $493 I broke down.. Ya mean I have to pay almost $500 for someone to stick a needle in my eye ???  I opted for the experimental version at $36 since I was looking at a possible shot every 6 weeks.. Oh yeah and I was in that wonderful Black Hole they call the coverage gap.. Already hitting $500-600 a month on my med copays there.

I looked like a creature straight from a Halloween Horror Show, but it worked. My vision is still a little blurred but doable with my glasses.  Whew!

In December Shands Hospital showed my the latest x-ray of my lungs. The right side is one grey area- but you can still see a lung on the left. I was told I would have this horrid cough for the remainder of my life - a side effect of Bronchiolitis Obliterans and scar tissue.   Plus that grey right lung is gathering mucus and Pseudomonas, similar to a person with CF..

I now have a recumbent exercise bike (from the best hubby in the world) and am trying to regain my strength and endurance. I still try the treadmill- but the feet hurt so bad for the next few days it almost makes it not worth it.

I have lost my will and determination with this past year of illness. I want to reclaim it. I know without it, I am doomed. First will have to be my energy.  I remember days where I would spend 2-3 hours on a treadmill so I could stay on the list for a lung transplant. And that was while on oxygen!  I need to find that person again !
I need to reclaim me !

Chronic Rejection

        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.