SAA and in UK too
Hi Polly, good to hear you are feeling ok apart from extreme fatigue with Hb 9. I have SAA and my figures are generally pretty low, Hb 8, neuts 0.4 platelets 40 and going down. However unlike you I am infection free and although rabbit ATG did nothing for me, nearly a year later and I am back where I started, they do not think a bone marrow transplant would be good for me. The folks at Kings say too high risk at 58 years old and relatively stable so staying on the cyclosporin and blood transfusions. Do you have any genetic changes, I have trisomy 15, which we are uncertain is relevant to any prognosis. Can they put you on the pill or something that stops menstrual bleeds to stabilise you? My periods were the worst time for me, I felt quite literally as if I was dying standing up. Would you go for a MUD? Have they offered you neupogen to bring up your white counts? I worried at first because americans seem to know so much more info about their illness, but I do feel the NHS has some great experts and the fact they are willing to consult with others is a good thing for us. Having small children and SAA must be really tough, I hope you get some help - some days I find it difficult to keep myself stood up let alone look after others! Do you get the funny shakes with the cyclo, or the hot flushes or the muddy brain? The figures for a BMT for your age are really positive so that seems a nice thing to have the choice. Stay well, stay in touch and good luck.
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