Tuesday, July 12, 2011

So now I know why I came back to Mayo: the people. And it is the people and the caregivers that will keep us coming back. When we were traveling back here I was thinking this is an awful long way to go and a lot of money to spend for a handful of tests I could probably get in Eugene and have forwarded to the doctors here at Mayo. And then you get here, and you meet the people and you hear their stories. You talk to the doctors who have all the time needed to sit and listen to your questions, address your concerns, and explain to you all you would ever want to know about this "insidious" disease. And you know this is where you need to be.
Once again it was an encounter on the porch that brought it all home to me. It began by talking to Richard and Sarah from Dallas, Texas. They have been here one year now. He has multiple myeloma with a lot of complications that are preventing him from doing his stem cell transplant. So they wait. People come, and people go, and they wait. They are truly in the moment each day. No anxiety, no bitterness. Just waiting for the time to come when they can harvest his stem cells and start the road to recovery, or alternatively, be told to go home because there is nothing more to be done.
As we spoke, out came Rita from Denver. Here husband Kirk, one of my new heroes, has familial amyloidosis like me. A kindred spirit--a brother. But they have been here one year, and one month ago he had his transplant: heart, liver and kidney all at the same time. Are you kidding me? Is that all you got ? I am flabbergasted by the magnitude of what he is going through. On the transplant train he is riding first class and I am sitting back in coach! Yet another reminder and lesson to me that there is always someone who has it worse than you. I had the pleasure of meeting and talking to him today. We kept it short because he was exhausted after a day of tests. But all appears to be well, and there is a good chance that they will get to go home in September. Overall his prognosis is very good, probably better than mine. For him, the affected organs are all removed, and he should be functioning as well as ever within a year.
For me it will be different. Or so they believe. As far as the transplant itself goes, the doctor gives me an A+. My rejection medication has been further reduced, and all is looking great. The amyloid doctor was less enthusiastic, lets call it a C+. The good news is that all indications are that the spread of the amyloid has stopped and he does not believe I am at further risk. On the other hand, he was very non-commital about the nerves improving and my impaired function being restored. But, and he was very emphatic, there is so much they don't know about this disease. My particular gene mutation, V32a, is a rare form and they have very little data about it. But there is hope that with time it can improve. So that's what Jeanine and I hold on to. We can be patient. And if it doesn't improve, if this is "as good as it gets", we can live with that. Who I am hasn't changed. What I can do in the physical world has been altered, but as I continue to learn, that really isn't what matters in the long run. Its a tough lesson to hold on to. It's easy to fall back into the mindset of focusing on what I can no longer do, instead of what I still get to do. So I am back here for a refresher course. And now I know we will keep coming back each year to Mayo for lessons about life. Be well, Rick

1 comment:

  1. Hey Rick. Just as you are inspired by Kirk and Rita, we are inspired by you. You remind us what our priorities should be. YOu've had good and disappointing news, but I'm glad to hear you continue to get quality care and attention. It's also good to know the lights are still on in Minnesota. We look forward to having you both back home. Please continue to keep us posted. -Dan


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