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......