Finding Peace Where You Least Expect

We thought our next visit to Mayo was going to be in March but after a couple rough weeks with lots of water retention, swelling and bleeding they decided they wanted us to come up now for a thorough exam.  The goal was to determine if all these symptoms were just a result of the progression of the liver failure or if there was something else happening that needed to be addressed.  They also wanted to do a complete exam and determine if any adjustments to my medications would help the increased symptoms.  So two more days of testing.

We decided to stay at the Gift of Life Transplant House (previous post) this visit.  I was a little apprehensive about staying at the house but with my diet the ability to cook for ourselves is import.  I was afraid it was a little premature to be staying at the Transplant House and that we would not have anything in common with the other guests.  I was also not sure that I wanted to be surrounded by a house full of other “sick” people.  I am so tired of not being able to escape the ever present reality of my illness and I was afraid that being surrounded by others in similar circumstances would be too much for me to handle.

My fears were all very wrong.  The Transplant House was wonderful, it was comfortable and felt like a home.  All of the other guests were genuine and sincere.  They seemed to be truly interested in me and my condition and status.  They were willing to share their experiences and their challenges.  They all had the capacity to understand our frustrations and challenge and like wise we could relate to theirs.  This was refreshing.  We have many people in our life that care a great deal and are very supportive but it is impossible for them to understand the impact and challenges that this disease presents.  They are sympathetic, compassionate and well meaning and we appreciate their efforts and kindness but this is truly impossible to truly understand unless you have been through the experience yourself.  It feels like trying to ride two horses.  One is the battle against time with a terminal condition the becomes more and more pressing everyday as you feel yourself deteriorate and simple things you took for granted become challenges.  The other is a hope for a medical miracle, one that in a few hours can make you whole and return you to normal in what feels like the blink of an eye.  This miracle is not easy, you wait hoping the other horse doesn’t pull too far ahead.  You wait knowing that for this miracle to be realized you are depending on the generosity of someone suffering a tremendous loss and grief.  The miracle may also come from someone close to you who is willing to literally give part of themselves to you and in so doing endure the same surgery, recovery and risk as you, but without any medical necessity.  This is truly a gift of selfless sacrifice and love.

There have been many sleepless nights where I have lay in the darkness and pondered this paradox.  This has made me truly appreciate the sacrifice of the Savior as suffered for each of us individually.  Realizing that he felt my pains and suffering, my anguish, torment and despair so that he can truly understand my tribulations and provide empathetic comfort in my dark hours.  I have no idea how long this journey will take or what other obstacles my dot the road but I do realize that I am not alone on this journey.

The house did not feel like a house full of “sick” people as I had feared, it felt like a family.  A family born out of a common bond of being a transplant patient.  All of the guests we met were upbeat and cheerful.  There was one woman, who had received a heart transplant that was extremely cheerful and outgoing.   She was loving every minute of life and you knew that behind her mask she had a giant smile.  As we talked one afternoon she told us that she felt great but the doctors told here she wasn’t doing that well.  She was fighting both a cellular and antibody rejection.  Her comment was “I don’t care, as far as I am concerned I am cured.  This is the best that I have felt in years.”

The best part of the stay was on Tuesday evening.  After dinner Julie and I were sitting in the parlor reviewing a few items we had purchased at an Italian Cuisine shop.   There was a fire and and assortment of comfortable chairs and a piano.  One of my favorite things is to just sit and listen to Julie play piano.  One of the other guests asked if it would bother us if she played the piano, I said no in fact I had been trying to get Julie to play.  She played a couple of songs and then managed to convince Julie to play.  As I sat there listening to Julie and watching the fire I realized that for the first time since June I had escaped the constant thoughts about my illness.  In this environment where transplants were all around me I had managed to step aside and find a couple hours of peace sitting in that parlor and listening to the piano and watching the fire.  This was so refreshing, it was what I have told Julie on numerous occasions I wanted,  “to just check out and leave all of this behind for a short while and really rest.”

As we were leaving, we started talking to a guest whose wife had just received a liver transplant.  They had been down much the same path we are on.  A low MELD score, very symptomatic and a significant amount of weight to lose.  They struggled for over two years on the list, then in late December ‘09 one horse seemed to pull ahead, things took a turn for the worse when her kidneys failed.  Now she needed dialysis and possibly a kidney transplant too.  One day after being put on dialysis and while she was at her first dialysis treatment she got the call that they had a liver for her.  The surgery went well and she was discharged from the hospital in 8 days!  Her husband told us how remarkable the change was with the new liver.  As soon as she came out of surgery you could tell a difference and now she has her energy back, her kidneys have resuscitated and most of the symptoms are gone.  This gave me real hope, maybe I will feel like myself again someday.

It is ironic that the greatest peace I have found was when I was surround by others who shared the same suffering and challenges.  That is the last place I would have expected to find peace.  The Gift of Life Transplant House is much more than that, it is a seed of hope.  Just as we know that winter will eventually melt and the green of spring will come, so now I have renewed hope that maybe there is spring over the horizon.