My case at Vanderbilt got moved to Priority One today and my CRNP called me late this afternoon. Her name is Donna. We will become great friends throughout this process.
I have to be at the Vanderbilt Clinic at 7:30a Tuesday, 19 May. On that day Mike and I will go to the Caregiver's Class first thing. Then I will have labs drawn, get a TB skin test, and in the afternoon have another bone marrow biopsy. She tells me it will be an all-day, long day. Mike and I are planning to go up there the night before and spend the night. Otherwise we'd need to leave about 4:30 or 5:00a to get there in time.
I will also receive a large packet of papers that I need to read and many consents that I must read, but not sign until I come back up there for appointment with Donna, my transplant doctor, etc. Then I come home for a week.
On Tuesday and Wednesday, the 26th and 27th I go back for appointments and more tests. Things like EKG, X-rays, various organ functions, skeletal tests, pulmonary tests. I also have to meet with Donna, Dr. Strickland, the transplant doctor, the social worker, the financial counselor, and perhaps some others. This is the time that I will actually meet the transplant doctor. By late the 27th or on the 28th they should have all the results in for me. Then the transplant doctor has to look at everything and decide there is nothing to prevent me from getting a transplant.
Provided all is well, they tell us that after the doctor gets the results from my tests done May 26/27, they will be able to "activate" donors. The expectation is that this should happen the first week of June. From that point, the timing has a lot to do with how quickly the donors can get their own tests scheduled (they have to do more physical exams and such) and then get these results processed and their stem cells or bone marrow collected. Although I now have two confirmed matches and two more being tested, only one will be activated. The others will be "in the wings" so to speak in case something precludes the first one from donating.
Donna tells me the typical waiting period is 4 to 6 weeks after the donors are activated before Day 0. Day 0 is the day that I am actually transfused with the new bone marrow stem cells. I will have to be at Vanderbilt before that to have the chemo treatments that will kill off my diseased bone marrow. So that means I am probably looking at late June to mid-July. Mike suggested that I might get my new cells on Independence Day (which he thinks is very fitting).
My platelets are quite low right now. I go get one unit of those and two of red cells tomorrow. I also have to get orders from my doctor here for my O+ platelets to take with me to Vanderbilt, in case I have to be transfused while I am there. Which is likely on the 27th.
I think we may have gotten past the hurry up and wait - for a couple of weeks, anyway.
December 2016 Newsletter
20 hours ago