Saturday, July 10, 2010

Yesterday was a good day. A very good day. Of my 7 trips out here to Rochester, the most positive and encouraging results we have had.

I met first with the neurologist. The results of my EMG test were about the same as in November, the last time I had the test. It measures how my nerves are conveying or conducting electrical impulses, and they aren't any worse. That is significant in the first year post-transplant. The subjective tests the Dr. administers, checking responses in the legs and feet to heat, vibrations and strength, actually showed modest improvement. She felt overall things had improved and would continue to get better. How much better remains to be seen, but I view this as just another test of time, trust and patience. The nerves can grow back at a rate of a milimeter a month, so it will be a long slow process. But at least the possibilites are there.

The final visit was with the transplant Dr. As I had hoped and believed, the transplant has gone well, and they are further reducing my immuno-suppressant medication. My concern was with the amyloid, and it has not done any further damage to either my heart or my kidneys as they would have expected to have happened in this first year. At this point I am pretty much risk free of further damage since any of the remaining amyloid in my body post-surgery will have disapated or attached to something in my body and already done whatever damage it was going to do. Dr. Potarucha, my favorite guy, was at something of a loss to explain how I have done so well under the circumstances. He said he doesn't see results like these very often, certainly not one year removed from transplant. Me, I attribute a lot of it to all of my friends, family and co-workers who have been sending me so much love and support. And of course, to my "caregiver", Jeanine, who has helped guide and support me through these uncertain and unchartered roads we have traveled together. You really don't know how you will respond or react to something like this until you go through it.

And juxtaposed to our joy and relief , is the ongong realities our new friends at the Gift of Life House continue to confront. We come back to find Jim, here on a 14 year check-up for his heart transplant, has been told that he has a pancreatic tumor that they feel is untreatable. Joel who continues to battle the initial adjustments to his new kidney. And George, my new friend who loves golf, failing to respond as hoped to the blood transfusions he has been receiving. The yin and the yang of the healing process here at the Gift House. We go home tomorrow. We return with our hearts lighter and more hopeful. But we also go with the awareness and love for our friends and family who continue to confront challenges in their own journeys. We are looking forward to seeing everyone when we get back. Love to all, Rick

Wednesday, July 7, 2010

Greetings from hot and humid Rochester. Two days of tests down and two to go. Got some results today that all looked good for the most part. The focus is on what the remaining amyloid proteins in my body have been doing for the last year since the transplant. The transplant itself halted further production of the protein, but at the time there was still a lot of it in my body. So the tests are to determine if they have attached to and caused any damage to any other organs.

The initial tests on my heart (ekg and xray) look good. The blood work shows an increase of a particular peptide that is indicative of a possible complication. The real test is the echocardiogram which I had today after I saw my Dr. The technician isn't allowed to tell you anything, but they had to come in and get some more pictures and I overheard them talking about a thickening of the heart wall that they wanted more views of. Even if that happened I don't think it is a major concern. The Dr. indicated that after the first year there is little chance of any further problems. I can't imagine any significant damage could have been done since the last echocardiogram in November. We see the Dr. again with all of my final results Friday about 4:00, so I plan on posting good news that evening and celebrating with Jeanine that night.

Our friends Scott and Gail left today on the winds of great news for Gail. She gets to stop her chemotherapy, and basically does not have to come back to Mayo again at any point in the near future. Her cancer is under control, her numbers are good, and she is free to put this chapter behind her. Although our times together at the Gift House are at an end, our friendship will continue.

I better close for now. It is our night to clean the kitchen, and Jeanine will think I am ducking my duties. I hope this finds everyone well. Be sure to pay it forward and let your loved ones know they are cared for. Love, Rick

Tuesday, July 6, 2010

George, from North Dakota. Here for a return trip after a failed stem cell transplant to treat his multiple myeloma. Joel, also from North Dakota: kidney transplant 5 weeks ago. Having a few complications but should go home within the week. Judy. Here on a three year check-up for her heart transplant. Drove in from Illinois with her husband Dale and then will be traveling this summer.

The people and faces out on the porch at the Gift of Life House have changed. But the stories haven't. We have all been drawn or directed here for the same reason: our health. For each of us, our life journeys have been detoured, interupted and intruded upon by any one of a variety of uninvited challenges to our otherwise, up to this point, "normal" lives. And we come here to try to either meet and overcome those challenges to help prolong our lives, or for some, to ease the pain and transition at the end of our lives.

For me it has been one year. July 7, 2009; my liver transplant. For me, it has gone well and things look good, at least they seem good to me. We will find out more this week. Had I not been directed to this place, the Dr. said that by now, assuming I was still alive, I would probably be in a wheel chair. But I am still here. I am still walking. And there are so many things that I am still able to do. I count myself blessed. I have the opportunity to still share and enjoy so much of this human experience. And it is here, in this place called Mayo, that I have learned and am still learning so much about what we do with that time we are given. Because when you come here, you confront each day the reality that this life does come to an end.

I am one of the lucky ones here. I am not on a time table, at least not yet. I haven't been given the countdown of how many months or years I have left. But last night I sat with George. They are not giving him much more time. His stem cell transplant has failed. His cancer is back. Even here at Mayo, the place of so many miracles, they are running out of answers, and George is running out of days. He knows it. His wife knows it. And yet we sat talking and laughing last night. He is an avid golfer. We shared our love of golf. He can't wait to play again, hopefully next week. "What a great year I've had", he told me. His transplant was a year ago, and he had a wonderful, pain free year. He has no regrets. He is not despondent. It's just how it is. You can tell that he senses his time here is almost done. He'll be able to play a few more rounds, literally, but that's about it. No fear, no anger, no remorse. Just an awareness and acceptence that his journey is coming to a close.

He is now one of my teachers. One of the many I have met here. Sharing with me lessons of how to live and enjoy my life while knowing and seeing, at least out of the corner of my eye, that the road does have an end to it. But it's not a bad thing--it's just there. And its not about what we take with us, certainly not the physical things. It's about how we travel that road. The love of family and friends. Making a positive difference in the world and other people's lives. Following and acting upon those intuitive, spiritually driven moments to do those little things. Stop and talk to your neighbor. Drop in on a friend or loved one unexpectedly. Take that trip you have been putting off. Get in that round of golf.

If nothing else, I have learned that I can either sit here and bemoan all that has gone wrong or that I no longer have in my life, or I can appreciate and take advantage of all that is still here and available to me. Right at this moment, I am back in school, here at the Gift House. Learning more lessons. I wonder who I will meet on the porch tonight? Love to all, Rick