Hey Marmab!
I'm not doc, just a (I hope) well-informed patient who's done a lot of reading, so take what I'm about to say with a big grain of salt. I'm sorry to hear about your shortness of breath, particularly since you've been so active in the past. Everyone seems to be different in terms of what HgB level gives them trouble. 9.1 works fine for me, but my Hgb fell very gradually over a period of years (I think), and that may have given my body a chance to adjust.
The ATG/cyclosporine recommendation makes sense, given that hypocellular marrow and younger age (isn't it nice to be part of a community where 50-something is "young!") are indicators that immunosuppressive therapy [IST] may be useful. If you decide to go that route, I'd encourage you to read
this post, and either
this thread or
my blog, and check out
the Campath trial at the National Institutes of Health. While it evidently hasn't worked for me, it has for others, and Campath, though still in trial stage, has some advantages over ATG/cyclosporine for MDS. It knocks down the T-cells more completely and for a longer period of time than ATG. So most folks who respond don't need the cyclosporine follow-up. It you cruise around marrowforums and read about cyclosporine, I think you'll find that it's a tricky drug to get right, with significant side effects.
You may not have been HLA-typed at this point, because transplant would be way off in the future for you, but, if you have, and you are HLA-DR15 positive, you will definitely want to think long and hard about IST & Campath. That's an important market for likely success with the therapy.
If your doc is recommending growth factors, your natural EPO level must be under 500, because they generally aren't prescribed for folks with higher levels. They actually work best, as I understand it, for patients with EPO under 100.
RBC transfusions aren't bad. It takes the better part of a day in the treatment center, and, if you can stretch your interval out to six or eight weeks, the HgB bump can definitely get you more energy (and breath) for a minimal investment of time. Not all the fatigue from MDS is simply HgB, but that's definitely part of it.
Have you consulted with a MDS expert? I don't know where in Mass you are, but Dr. David Steensma at Dana-Farber and Harvard is one of the noted experts in the field.
Take Care!
Greg