Quote:
Originally Posted by stephy
ATG/cyclosporin treatment has been suggested by my consultant. He gave me some info about how the treatment works etc, possible side effects, and suggested I go away and think about it.
However for me the bigger questions are about the practicalities of the treatment and how it will interfere with life. I'm mAA progressed to sAA and I'd just got my head round the "transfusion as required" thing and slotted my life back round it - but now it seems things might have to change.
He mentioned I'd need 5 days in hospital for the course. What is this like? Is it in isolation? And then do you leave once the ATG is finished and continue the prednisolone/cyclosporin at home, or do you have to stay inpatient for longer? How well am I likely to feel then - how long until gently starting back to work, seeing friends etc?
Sorry for all the questions, just would like to have a really full picture to help me make my decision (although know this is a different journey for everyone so there's never guarentees).
Stephanie
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My daughter had both, she didn't respond to ATG treatment, she also had fungal infections and blood infections afterwards, she was in the Peds ICU, then hospitalized for two months afterwards. Cyclosporin has been hard too, she has huge increased gums that cause a lot of bleeding and have to have surgery on them. ATG has a risk of causing cancer, the risk is increased at each exposure of it. She is waiting for an bone marrow transplant, as she has had over 112 blood tranfusions since may- she is diagonsed with very severe aplastic anemia. Sorry for the Diagnoses, as it's been a rough journey for us. Her carepage
www.carepages.com search alexisrose for this journey.