[Lisa V]

That sounds pretty scary, James! What did they say caused the swelling and rash? It sounds like some kind of allergic reaction. Did they give you Benadryl? I hope that's the last you see of that kind of thing!

I know what you mean about mental state. It really turns your world upside down, doesn't it? How are you managing all this without insurance? The treatments, transfusions and medications are all very expensive, and if you can't work then it's just that much worse. We at least have some kind of insurance, but when my husband was healthy he didn't think it was important to have drug coverage and now we're stuck and can't get it, so that's been very difficult. We were able to get some help with the medications through Needymeds.com. You might look into that. I just hope he never needs a transplant, I don't know how we'd manage that.

The doctors are right that it may take a while. Waiting is the hardest part, and it's something we all know well. Some people start to respond within the first month, but I've heard of others that take up to a year or so. Usually they say to wait about 6 months, and if you don't see ANY change at all, then it's time to move on to Plan B. Ken didn't start to improve the first time until about 10 weeks after the ATG. The second time it took only 5 weeks, but he had already been on cyclosporine beforehand, so that may have speeded it up. Everyone's different though.

Hang in there!