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.