Recently I contacted my Dr. in Chicago and asked if my doctor in Green Bay could take over my treatment. She of course did not like that idea, stating that I have a chimmerism, or something like that spelling, and only she could monitor it. So my natural e-mail response was , "what is a chimmerism?" I then looked it up online and the first thing that pops up is a person with two different sets of DNA as in the case of a hermaphrodite, (a person with both man and woman parts) so I got to thinking this whole thing is going to get very confusing. The next hit on the search said two sets of DNA as in the case of a bone marrow transplant. That sounded better.
Well I don't get a bone marrow biopsy very often and that is the only time she can check this chimmerism thing. So after much e mailing I think I'll have to go to Chicago in about six months. Dr. Tasahldar in Green bay will see me through the iron chelation, and I will get my vaccinations based on the overall plan and my current health. Everything else is going very good. I'm still very tired at the end of the day and my eyes still hurt, but small price to pay for life. I would have been dead for some time by now if it weren't for God and the transplant. Plus I should get to meet my donor soon, May 3rd is the day I got my stem cells, my birthday. I will be contacting Be The Match today to see how this works.
Stay well and God Bless,
Scott
Scott, I'm a couple months behind you...my "birthday" is July 3. This whole transplant thing is such a sharp learning curve. It's hard to explain to anyone...I get weary trying. I, too, wonder if my local doc could handle some of the minor issues I have, since my transplant team is almost 2 hours away in Charleston. I guess I have decided to err on the side of caution. My team is so much more in touch with the issues of gvhd and how to treat them, I really want them to monitor me. Dry mucus membranes are my worst gvhd issues. I've been lucky to dump my iron and since they continue to wean me from meds, my blood pressure has normalized as well as liver enzymes'. My skin is very sun-sensitive for the first time in my life and I'm having to make some major adjustments there. It's really all about adjustments I guess. The "new normal" is hard to accept until I consider that I'm lucy to be alive at all! I'm alredy starting to worry about my bone marrow test in July, but I refuse to dwell on it every day. If I relapse, I want this precious time to be as good as it gets! Keep the faith. This is for the rest of our lives. Sherry
ReplyDeletehi Scott. so happy to hear you are feeling well. I as well feel great like nothing ever happened except for this stupid high iron. Ive been giving up a pint of blood every couple of months but the ferritin seems to be going nowhere. im going to look into natural ayuverdic herbs next before medication. last I checked my ferritin was 1900. to contact your donor, all you need to do is go through your hospital where the transplant was at, maybe the BMT coordinator, you complete a form saying you are willing to release your information to him/her and then the donor fills out the same form, and you before you know it you get a copy of his/her form and you take it from there! Sherry Gordon
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