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Old Tue May 8, 2012, 09:23 AM
Coping1 Coping1 is offline
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Join Date: Jul 2011
Location: Kentucky
Posts: 15
Catherine,
I do take Neupogen whenever my ANC gets below 550. When I get an infection all of my counts bottom out so I get RBC transfusions, and platelets along with daily neupogen.

I have just seen my BMT doctor one time so I think he is just now trying to get a handle on my situation-my 1st BMB was done locally last June, the second last month was done by him ay Vandy.

However, he point blank told my husband and me that a BMT could be disasterous if I had a flare of my blood disorder during the process-that my morbidity chances would be greatly increased. When talking about it with my local hematologist, she said that I can't keep getting septic, that these infections are going to kill me. We have been through a lot together over the last 28 years, so I feel like she has my best interests at heart.

I went to CLeveland Clinic last year for my blood disorder and we are now trying prophalactic antibiotics and monthly IVIG and plasmaphersis which has been helping somewhat, so I am hoping that if we could get the blood disorder under better control maybe that would give us a window of opportunity to treat whatever may be happening with my bone marrow.

Cleveland Clinic were the 1st ones to bring up to me the possibilty that I might have MDS, but my local hematologist said that she had been suspecting it for a while.

Do you mind telling me how you were diagnosed and how long it took to get a firm diagnosis?

~Thanks so much
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