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.

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 !