View Single Post
  #2  
Old Sat Apr 23, 2011, 07:52 AM
Karenish Karenish is offline
Member
 
Join Date: Feb 2011
Location: Stafford, United Kingdom
Posts: 100
Information on AA

Michele firstly sorry for your neices diagnosis! it comes as a great shock to all of us, and all of us like you had never heard of it until it becomes your reality. If she is young they will probably want to take her down the bone transplant option, these are improving every day and no doubt your doctor will discuss it with you.
The other treatment is ATG/ALG which is basically rabbit serum which has human antigen being put into your system over a period of 5 days while you are in isolation in hospital (I have just had it and waiting to see if it works) for me it was not unpleasant, bit like flu for one night and a couple of rashes, but these soon went with piriton, the most annoying thing for me really was the hickman line being put in and the shear boredom of staying in isolation for 5 weeks!!! BUT there is a 70 - 80% chance of it improving your blood counts. It isn't a cure as such, but some people go into complete remission for the rest of their natural lives! so as good as a cure I would say. All of this should be discussed with your doc. Write down your questions before you go in to see them is my advice, and, where the computer is a good source of info, not all of it is true, you will also read some horror stories, which I expect are a bit like stories of ladies giving birth, they can be a bit embelished and of course every single one of us is different. It is not a nice diagnosis, its one I would rather not have (I am 51 and have just embarked on a wonderful new career, moved to a new area, fallen in love with a wonderful man......) it has come totally at a time when everything I ever wanted was in place. BUT it is not going to change me, I will just have to adapt i.e. being very mindful of washing hands, and keeping away from bugs etc. until of course I am in complete remission (grin) positive thinking always helps. Good luck, it may seem like the end of the world, but for lots and lots of us, it isnt. xxxxx
Reply With Quote