Thread: patients in CT
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Old Sun Nov 30, 2008, 10:30 AM
Beth I Beth I is offline
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Join Date: Apr 2008
Location: Farmington, CT
Posts: 22
Fibrosis, etc.

Hi, Maddie.

My Thanksgiving was the usual controlled chaos. I hope you had a great one, too.

The myelofibrosis has been developing over the same period that they've been watching the MDS. Essentially, it's the marrow becoming scar tissue. It makes it difficult to get aspirations when the do the bmb (mostly it's dry taps these days) and it makes the bmb itself unbelievably hard to do. My guy at Sloan gets on a stool and puts his body weight behind the instrument to get it in - lots of panting and sweating. I've been begging for conscious sedation and the docs there agree it is necessary, but they don't do conscious sedation for bmb there, so it has been difficult to accomplish. I have another one scheduled for 12/15 and will supposedly get conscious sedation. We'll see.

I hope you don't mind my mentioning this, but you might want to get another opinion besides Yale. I considered there, too, because you definitely need to consider proximity for a transplant. I mentioned earlier that I've gotten a lot of opinions on my situation and whenever I mentioned Yale the response was not so positive. It is primarily because the transplant unit is smaller and they have had fewer transplants than the bigger ones. The consensus seems to be to go with a larger unit. At least among the docs I've seen. Have you looked at the info on centers in the NBMTLink site?

Anyway, I hope I didn't offend you. I just know from my own need to get as much info as possible, that there are a lot of choices out there.

What does the future of your anemia situation look like? Is it related to the MDS or just a bad coincidence?

Beth
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