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Originally Posted by BerryP
Hi i'm in the UK and had pretty much the same treatment except that when I got the shakes they said tough. Deleted 13q as I understand it means that part or all of your chromosome 13 has bits missing from it, hence the deleted. I have something wrong with my chromosome 15. From what the docs told me this is not something you were born with but something the disease has caused in your body. Rabbit ATG is the only thing approved for use in Europe at present and in my case it didn't work. Hope things run smoothly for you and nice to have the option of BMT. I am 58 and the risks are too high so managing on tx but with me platelets sit around 40, whites 0.5 and hb 8 so they give me packed red cells and shortly an iron pump. Its a hard disease to explain to anybody who hasn't suffered it cos the effects seem so random, changing from day to day. I wish you luck with the treatments and stay in touch, this website is very good, its helped me a huge amount.  |
Thanks for that and hope you are well.I have just been for blood count,(neut 1.5 hb 9.1 whites 3.1 and platelets 8) consultant is happy that they seemed to have levelled out,but to go back Thursday as he is not wanting to give me platelets as often if i have no bleeding and is not keen to put me back on cyclosporin.
Good hear from somebody close to home the kids were at Chester zoo only last week.
Cheers Paul