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Old Sun May 1, 2016, 04:50 PM
marmab marmab is offline
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Join Date: Jul 2011
Location: Massachusetts
Posts: 67
Good advice from everyone here. Advice I should have taken after my transplant.

I began running a fever two months post transplant (one month after being discharged from the hospital). I (foolishly, in hindsight) took Tylenol for several days to keep the fever down before finally admitting to myself that I should consult my doctor. It turns out that I had a serious case of disseminated nocardiosis (a rare infection, with lung and brain involvement in my case). I was admitted to the hospital immediately for three weeks of IV antibiotics, and then after discharge I had to mix and self-administer IV antibiotics at home for two more months (3x/day, two hours per time). Inconvenient, to say the least. And, because this type of infection can lurk in the brain, and because my immune system is not fully reconstituted, I have to take Bactrim every day, and probably will for the rest of my life. (I have low CD counts -- my CD4 is well under 200 -- partly because of the ATG treatments I've had, and partly because Campath was used as part of my conditioning regimen before transplant. From what I've read, reconstitution of one's immune system, especially in an older transplant patient and one who has had these treatments, is a complicated business, and complete reconstitution may never happen. And with Nocardia bacteria possibly lying in wait in my brain, I have to stay on the Bactrim for prophylaxis.) My hope is that one of these years my CD counts will normalize, or at least rise enough to get me out of the danger zone. Interestingly I don't get sick. The immune system is a complex thing.

So...long story short, it is wise to take fevers seriously.
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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