[Lisa V]

Stephanie, you can read some of my previous descriptions of my husband's two ATG experiences in the link Neil has provided, or by searching my name too. He had a private room, but was allowed visitors if he wanted them. Actually, it was just me. I told everyone else it would be better to talk to him on the phone, which worked out well. Luckily he never became severely neutropenic. If he had, they would have tightened up on precautions to avoid infection, which they explained to me at the outset.

Hopeful brings up a good point, though. What sort of decision are you trying to make? Between ATG and BMT or between ATG and not treating at all? Those are two very different issues.

If you're looking at the relative impact the procedure itself will have on your life, a transplant is HUGE compared to ATG/cyclo. In fact ATG is often part of the transplant protocol. There you're looking at a minimum of 3 months down time, and with complications (which there often are), it could be much longer. The decision whether to go that route rather than trying ATG first would depend on your age and whether or not you have a good match. If you are young and have a sibling match, your odds for a complete cure are good.

If you don't have a sibling match or are over 40, then ATG is the usual first line of treatment. It doesn't guarantee a permanent fix, but doing nothing is not really a viable option for most people. I do know of a few people who have gone other routes, i.e. making strict nutritional and life-style changes, avoiding medications and other toxic chemicals, but I only know of one who has managed to achieve a full recovery that way. Spontaneous recovery with no action whatsoever is not unheard of, but it is pretty rare once you get to the point of needing transfusions.

Transfusions bring with them a host of problems too, like iron overload and histological incompatibilities. They may be unavoidable, but if there is a way to minimize the number of transfusions you need, my advice would be to take it. Transfusing alone is not a good long-term survival plan. I'm not trying to frighten you any more than you already are, just clarify some of the issues that go into making treatment decisions.

All the best with whatever you decide!