Hi Emma.
I've also got (had) SAA/hypoplastic MDS, and I'm pretty young, too (30), so I hope my experience helps you (I've got
a really long thread in the Transplants forum if you want all the details!).
You've still got some time left on the ATG to see if it works, as Lisa pointed out, but if it were me, I'd start looking for bone marrow matches now so if it turns out the ATG doesn't work, then at least you won't have wasted any time and you know if you've got a donor waiting in the wings or not.
At your young age, I'd definitely consider a transplant. ATG doesn't last forever even when it works (I'm apparently the world record holder at 25 years, but even mine relapsed in the end), and so you've got a choice between doing the less risky but still very invasive ATG again every 5-10-15 years, or doing the higher risk BMT and being done with it for the rest of your life. I didn't have a choice last year, but I know mine would've been the BMT anyway knowing what I do now.
And we're both really lucky in that our type of MDS is by far the best to have for a BMT - I had a "mini transplant" which essentially means you get waaaaay less chemo than everyone else (and no total body irradiation) because there's hardly anything in your bone marrow to kill off before getting the new cells. If youre young and healthy and not worn down by years of treatment before the BMT, you've already got the best odds you can possibly have (and the odds they'll tell you about BMT survival are SCARY, but you've got to remember that most BMT patients are much older and have cancer so they're not odds for cases like YOURS!).
Don't get me wrong, a BMT will be an entire year of sh*t that you've got to take out of your life, but it's not quite as scary as the statistics make it out to be. You do lose your hair though, yeah. I just bought a bunch of fun wigs in funky colours and now I've got a pixie cut. I thought losing my (really long) hair would bother me much more than it actually did!
When I think about where I am today (8 months post transplant) versus where I was this time last year, I am far far better off, even with my few lingering issues.
And by your use of the word "poorly", it makes me think you might be in Portsmouth, England rather than Portsmouth, Virginia? If so, your consultant should DEFINITELY be speaking with Prof Mufti at Kings College Hospital in London (where I had my transplant). He's the leading expert on MDS in the UK (and some might say the world) and a thoroughly lovely man. If you can get an appointment with him, you can come away smiling even if the news is bad.
(and if you are in the UK and want to talk, send me a private message and I'll give you my email or phone number)
melissa