Mezoth,
Thanks for reaching out! I live in Mt. Airy and I'm back and forth to center city frequently. It's comforting to know that there is a fellow sufferer not too far away if I have any questions!
My doctor has told me to plan for a week inpatient - 1 day workup, 4 days for the infusions and a couple more days just in case I guess! And we have made the decision as a family that I should go in ASAP after my daughter's graduation, which is on 6/9. So it's looking like 6/12 will be my date!
She said I'll then need to lie pretty low for a while. The two things I'm hoping for is to maybe make our annual summer trip to our house in Southwest Harbor Maine - I can "lie low" there just as easily as I can here, but the logistics of the frequent blood monitoring may prove challenging. And I have my fingers crossed that I may be able to accompany my daughter to her college orientation in August. She's likely to be attending school in Colorado, so there we have the additional complications of air travel and elevation. So that may be too optimistic.
I truly hate to contemplate missing these things, but I'm telling myself that this is a temporary sacrifice for long-term health.
I was pretty darn symptomatic when my Hg was at 7.3-7.9 - difficulty with stairs, blood "whooshing" in the ears, heart palpitations - so I think that setting the limit at 8 is good for me. That might mean one or two more before my treatment, but maybe my blood will hold up better than that! And I'm hoping my platelets don't get below 15 at all, but I guess we'll see.
Good luck to you! I'm guessing that the first round of ATG you did was not successful and that is why you are doing a second one - so fingers crossed for you! Let's keep in touch
