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Old Thu Dec 24, 2009, 12:57 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Stephanie,

Everyone is different. You could get lucky like me. They kept me at the hospital for 10 days, but could have let me out sooner. I was in isolation for only 3 days (a more urgent case came in and they needed my bed). While in isolation, you can still have visitors if they are healthy. The air in the room is filtered, and it seems like everyone takes extra precautions to keep things sterilized while your ANC is low. You also get the best nurses, which is a definite plus

Expect to have a rough night after your first dose of ATG (flu-like symptoms, high fever, maybe cramps). Apart from that first rough night, I felt fine except for day 5. A nurse advised me to "get moving" as soon as possible. So, by day 2, I was walking the halls and stairwells twice a day (with a mask). When I got home, I continued prednisone and cyclosporine. I still had regular blood tests and got transfusions as needed. I was able to function like normal at home immediately, but again I was lucky as my doctor thought it would take a month post-ATG to feel okay. I still got tired early. Prednisone was a nightmare (literally). Everyday I *felt* better, although I still needed transfusions for awhile. Psychologically, it was very rough watching and waiting (and still is)!

If you have SAA, then you must either go with IST or a transplant. Watch and wait is not an option, as the disease will progress rapidly left untreated. Transfusions are not treatment.

Best of luck! Think positive thoughts!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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