And that is why I return to Mayo.....

     Trying to convey in words the experience of coming to Mayo and the Gift of Life House is so incredibly difficult.  You have to live it to understand it.  The living environment at the house is as life-altering as ever.  The people, from all countries and different walks of life, facing incredible challenges.  Tiffany and Alki ages 20 and 16 respectively, with kidney disease and enduring the hardships of transplant at such a young age.  Both have met with complications with their new kidneys and are exhibiting such resilience and determination when all they want to do is go back to school and hang out with their friends.  The caregivers having to watch their spouse or loved one struggle each day with pain, fatigue and nausea, wishing that there was something they could do to alleviate the sufffering and discomfort.  So many people, so many stories, and so much love.

     The relationships and encounters with people here are often short, but they certainly don't lack for intensity.  If you like straight talk no holds barred conversations, this is the place to be.  And the strange thing is with many of these people you may only encounter them once during the stay.  But the honesty and openness of the exchange is such that it feels like they must be one of your closest friends and confidants.  The trust that is shown and given in exchange, the intensity of what is shared, actually exhausts you by the end of the day.  And that doesn't even take into consideration the many appointments you scramble around to each day.

     With that said, Jeanine and I found ourselves questioning whether we should continue to return here next year.  Not that we don't like the experience:  we do.  For us it is feeling different now.  Before, it was the need and the drive to get diagnosed.  Having gotten that, came the determination to get the transplant and try to get well.  And along with that came the challenge of realizing that I could die from this disease and confronting and coming to terms with my mortality.  Having done those things, the new challenge has been to accept and learn how to live with the fact that while  dying from amyloidosis may not be as imminent as we once feared, how do we deal with the debilitating  aspects of this illness and the continuing decrease in bodily functions.  How do we live with the disease?

     So we started thinking most of these tests I need can be done at home each year...the transplant seems good and we know the disease is getting worse as this weeks results demonstrated once again.  Why not just do this back in Eugene?  And then we went to see Dr. Poterucha.  My hematologist, my coordinator, my friend.  He came in the room, and having not seen me for two years, attempted to make a comment in jest about how much weight I had lost.  He then got very quiet and just looked at me and tears welled up in his eyes.  After a time he said through his tears "I'm sorry, I thought I could do more for you".  And so began an hour and twenty minutes of talking, sharing, laughing and crying about this journey we have been through together this last five years.  Where else can you find a Dr., a person, with the integrity and compassion of a man like that?  We have that here.  Ever the irrepressable one, he came up with a game plan of yet another regimen of prescriptions to try.  Again instilling in us hope and the determination to try.  So assuming my echocardiogram  indicates that my heart is not too impacted yet to withstand these new prescriptions, we will give something new a shot.  We will see if maybe we can succceed in arresting the progression of these symptoms.  And that is why we come back to Mayo......

Clarity

After a two year absence from Rochester, Jeanine and I find ourselves back at the Gift of Life Transplant House for another annual checkup.  It has now been five years since my transplant, and about seven since I became noticeably symptomatic.  The shuttle in from Minneapolis and these first few days have brought back so many memories for both of us about the journey we have shared and the time spent here.  There are flashbacks to the many people that we have met, special moments we have shared, and the many miracles we have witnessed.

Within minutes after entering the GOL again we began making the familiar connections we have so often in the past.  Patients and their caregivers, where they are from, how long have they been here, and what they are being treated for.  And the word that came to my mind was "clarity".  Life for people here has been stripped of its many daily aspects and interruptions of job and kids and bills and neighbors and lawn care...and the list goes on and on. Here their life has been distilled down to its essence and their life has become clear as they focus on getting diagnosed and getting well.

It is not unique to this place, although I think the stakes are somewhat higher.  We have all had this experience of clarity, where life has become so in focus and simplified.  I'm sure it is like that for women as they focus on caring for their newborn child.  My brother-in-law Ed is experiencing that clarity now as he hikes the Pacific Crest Trail.   Athletes must feel the same as they focus on a big match or important tournament.  Nothing else matters.  Their lives become inspired by the single goal and purpose, and that goal gives each day a known direction and meaning.  The rest of the world almost doesn't exist, at least for a brief time.   Life becomes so much simpler and more meaningful.

You sense that when you walk in these doors, and in the people you meet here.  Everything "out there" does not matter, at least not right now.  It is all about that next test or procedure, addressing the meals and medicine needed for today, or getting in that walk that is needed to maintain some exercise.   They all have clarity of purpose while they are here.  You can feel the energy.  You can sense the focus and direction.  It is truly remarkable to be around this environment.  The hope and determination to get well.  The support given to one another.  The shared bond felt towards one another.

Clarity.  That is the word that comes to mind as I think back to how Jeanine and I were during those initial visits and stays here.  But it feels different now.  Its like the athlete after the tournament has been won (or lost).  Its how my brother-in-law will feel when he finishes his incredible hike.  Its how people here feel when their treatment is done or the surgery has been successful and they get to go home.  Its like:   "now what?"  That event which provided  so much clarity is now over.  So how do I carry that sense of purpose forward as I go back to my old life?  It is such an intriguing question.  I sense that I am in that place now; that I am at a different place than so many of the people that are here right now who are immersed in the clarity of their current experience.  Jeanine and I are in more of the "now what" phase as we have moved on and are trying to bring that sense of clarity and purpose to our lives outside of Mayo and the GOL.

I expect my tests this week to be unremarkable.  I believe things have stabilized as far as the transplant, and I know that the amyloidosis has continued to progress.  For us this week is about seeing some old friends, meeting with some of the doctors that have been so good to us, and remembering what is was like five years ago when we had such clarity.