[SherryM]

Neil,
thank you so much for responding. I read all the posts from Andrea...thank you for sending that link. I've been browsing around here for over a year and finally realized I truly need some "been there done that" contact with a real live cyber person.

I'm thinking that cyclosporin may not have been used last time (2.5 yrs ago) because that was a clinical study my husband was in with Dr. List. We didn't know enough about it to question this before hand.

May I ask- is it usual for someone going thru frequent transfusions to display a ummmm...kind of Jekyl and Hyde personality? The difference in the week before and the week following the transfusions has been considerable. At first I thought he was angry with us but have come to see the pattern here...at least in our circumstance. And even better...he has come to acknowledge the radical changes as well so we can be more gentle with each other.

Just curious if others have experienced this as well.

And yes...he is very healthy otherwise. This took us completely by surprise and it's suspected he developed some sort of poisoning from benzene used in so many chemicals on the boat.

And I am deeply greatful to my brother in law for stepping in.
I feel so guilty that I can't be with him but our dtr is not able to travel.

Thanks again...it feels so good to "talk" to someone who understands.

SherryM