Hi Polly, it occurs to me that pregnancy related AA is a different animal to idiopathic AA. Do they know if yours was pregnancy related? Also I have to say that having lived for nearly a year with the restrictions of low blood numbers and the utter exhaustion and mind numbing fog (perhaps thats just me looking for an excuse!) I am sorely tempted by BMT. The figures for 58 year old are not quite 50% alive after two years but there are days when I think the risk is worthwhile. Ciclosporin seems a much more reliable medicine than ATG. I have not responded to ATG at all, and exist on ciclosporin and blood tx. Doctors are great and they will give me more blood if I have holiday plans etc. Do you cope day to day with two young children because I can't even look after myself. Climbed a ladder yesterday and legs literally black and blue today. It bugs me that stuff I used to take for granted now has to be planned for and rested after and I feel I am wearing out the sofa! For you, this Prof at Kings seems incredibly highly regarded and there have been lots of trials on ATG recently especially the rabbit stuff. ATG was not rough for me and I would not mind going through it again, it does usually mean 3 weeks in an isolation unit but the actual treatment for me was 14 hours per day on a drip for five days then sit and wait. I got the shakes which was funny and a couple of days of teeth clenching and one horrid night of bad tummy and head.
Your numbers seem to be moving up quite well and they would not normally transfuse at 9.Hb. Sometimes this is a sit and wait disease and provided you are coping on the ciclo and your cytogenetics look okay the doom and gloom prognosis just won't fit your case. My advice is do what you can when you can, if you can and ask questions of the docs. Maybe take someone in with you when you see them, we are often such poor advocates of our own condition whereas someone else can tell it like it is. I took my husband in last time and got some really good answers (not nice ones but good to know) because he told the doc how I really live, i.e. in purdah, resting after even one flight of stairs, not walking properly because antibiotics swell my achilles tendons, hot and cold, can't drive, confused etc. I would never have bothered the docs with that kind of detail but he took pity and
gave me extra blood so had a ball for two weeks!