For years I enjoyed hiking on the Appalachian Trail from New Jersey to Vermont. The trail in New England was almost entirely through forest and it felt like you were walking in one endless green tunnel. This made it very easy to get lost. In order to recognize the trail, the trees are marked with white rectangular blazes or trail markers. I can imagine how difficult it would be to navigate the trail without them. I also wonder what it might have been like for the first person to pioneer this path. I am sure they fell into false and difficult trails and had to double back, losing precious time.
I feel this way right now. since Stanford hasn't treated an amyloid patient after a transplant in many years, it is unknown what the chemotherapy does to the new heart. Just as well, my doctors in Santa Clara are experts at protecting the transplant, but have not taken care of an amyloid patient either after transplant. They were all very concerned that my rejection did not resolve after two weeks of intensive intervention. Yesterday everyone was talking from Santa Clara Kaiser, Standford and the Mayo Clinic. The questions involved drugs levels, drug interactions and ultimately one pharmacist suggested that Revlimid might increase T-Cell activity and IL-2 levels. This would have a direct toxic effect on my heart despite high levels of anti-rejection drug activity. This was unexpected as the usual literature doesn't mention this. This trail blaze was missing.
As a result, I have stopped the Revlimid for now and am again on high dose steroids in the form of an IV infusion of Solumedrol for 3 days. I imagine that within a week this will all resolve and I will be back on the correct path. I guess someone has to blaze the new trail. It will be more clear for the next person who follows.
Hi Kevin, it was so good to talk to you last night. I know things are crazy right now but enjoy the moment. I read your posting and of course, you and I know, you are "trailblazing" for me. I wish I could make things better for you. You are a kind and gentle person and just as you said, you are a doctor and understand what is happening and can ask the questions that I can't. I thank God each and every day that you have come into my life. I don't know where I would be without your comforting words of encouragment. It's scary to go through what we are going through. I wish I could do more for you. Just know I'm grateful and appreciate everything you have done for me. I say my prayers each and everyday that our disease will be put into remission and we can live our lives free from this disease. I know we can do it together. We have to be strong! We both have loving spouses, children, family and friends that will support us and keep us strong. My blessings are with you and your family tomorrow. Mom sends best wishes for you, Barbie and your family on this special day. Give Barbie a big hug for me too! debbie douglas
I think of you all the time Kevin. I talk with Debbie on phone all the time and she keeps me updated on you :)
Finding that correct dose of medication is a battle for all of us. I am having double vision and just feeling a little funny but I think I figured out why. It started with the increase of cozaar too 100 mg and last time I went up on it I felt funny also.
My b/p wont come down tho grr
Keep posting I love to read you and Debbie's blogs. Hang in there, they say this first year is the hardest right?
Guess what? I got a phone call from my donor's mother!!!!!!!
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