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Preparing for Bone Marrow Transplant: My mind is racing
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 8 11:10am | Replies (45)Comment receiving replies
louisern
I think it sometimes about the doctor you see and what you have walked through before. Just possibly for me it was because my blood numbers had a record of continuing to decrease to low levels. Red cells and platelets. I like talking to the RN's and seems for your husband the risks at that time with a transplant outweighed the help. I alos got lucky to accept participating in a research study that i looked at online. Its history. Others had started it and I was a group to add to the statistics. A couple dozen of us were in it. A pill that was given when GVHD symptoms happened, in this study we got it day 5 after transplant to day 100. There is a tacrolimus pill I got to and that one ended or tapered starting day 100 too. Both are antirejection. Fingers crossed i have not had any GVHD.
The transplant nurse called to follow up on me and said some people never get gvhd symptoms. Those can be good, as it gives our new immune system a chance to fight off the germs.
Was Dave treated with the blood transfusions in Hawaii?
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Yes Dave had numerous blood transfusions in Hawaii. For about a year he was receiving transfusions every 2 weeks. He became very difficult to crossmatch requiring several days for blood to be shipped in for him as we live in an area without a blood bank. He lived with a hemoglobin around 7.0 for much of that time, which is no kind of a life! He still tried to work but it was difficult to keep a job with the time off required for medical needs.