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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 2 days ago | Replies (590)Comment receiving replies
One of the things I have noticed is that my doctors all seem to have different personalities. When I was first admitted to the hospital for treatment I talked with an oncologist. We talked about my wishes regarding an advance directive. I told him that I thought it would be a fate worse than death to be in a comatose state for weeks or months, or even worse, to be conscious but not able to communicate. He told me, don't worry; whatever will happen will happen a lot faster than that. That actually helped.
Another oncologist in the hospital who was concerned about my condition told me that he would pray for me. That was the last thing I wanted to hear. I told him that I would prefer that he think for me instead.
My transplant specialist had a way with words. At the informed consent meeting when he described the possibility of a reaction that would cause itching, he said that I might itch like a chimpanzee with fleas. He also told me that a bone marrow transplant was biologically implausible; it was against the laws of man and nature.
After the transplant I asked the doctor how long my GVHD reaction would continue. He said, sorry, I left my crystal ball at home.
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I had to laugh about the doctor who left his crystal ball at home. Next time you should ask if he brought it with him to work. I agree that it’s hard to predict how long GVHD flare would last, but the doctor should have observed enough patients with that specific GVHD to give a better answer.
I would have liked for a doctor to pray for me when I was going through my transplant. This just shows that we are all different, and what would be meaningful for me wouldn’t be for you.
I also had a lot of different doctors since I was diagnosed with AML in 2016. Moving to different states twice since then didn’t help either. For me, it’s important to have a doctor with many years of experience with blood cancers and transplants, someone who listens, answers my questions, explains well what I am experiencing and proposes a course of action.
Most of my oncologists have been top notch. I did have a young oncologist three years ago who ordered an unnecessary biopsy that resulted in me needing a thoracic surgery to treat the biopsy infection that could have killed me. He didn’t listen to me when I told him that the growth wasn’t new and was previously evaluated by another specialist.
Anyway, this unfortunate experience led me to connect with Mayo Clinic and now I have an excellent doctor.