Dear mola-tecta,
I really understand where you are coming from.
My mother's platelets have never dipped under 10 for the past several months (even after a week after a transfusion). She still can't hold, though, at 20. In the first few months after ATG, her platelets would also dip under 10. Now, after 7-8 days, her platelets are usually at 13-15. And, like you, my mother's doctor won't let her go long enough without platelets to see if see would actually slip under 10 two weeks after a transfusion. Just the way it is. You're a slave at times to the doctor. No matter what the doctor says, my mother's platelets are slightly better than they were months ago, despite still needing 1 unit of platelets every 7/8 days.
As far as my mother's blood count, we've noticed that her blood is stabilizing between 7.5-8.5 on 1 unit of blood. While that is pretty low, she seems to stay in this range. She's had two rises in 11 days: she went from 7.5 to 8.2 (in one day) and then from 8.2 to 8.4 (after 4 days). She hasn't gone under 7.5 for over about a month now. I do think that means something. She would also at some point get in the low 7's and in the high 6's. 3 months ago, she had a big rise in blood (8.6 to 10.5), but that was never repeated. Must have been a one-off.
Finally, regarding her neutrophils, she's averaging about 1100 for about 2 months now (ranges from 900-1500). That is a big improvement from 300-600 range after ATG many months ago.
Your mother's neutrophils are great. There is definitely no worry for you on that front. According to my mom's hematologist, neutrophils at around 1000 is fine. She said that she could be closer to 2000, but having higher neutrophils doesn't always translate into better protection. People can get very ill with infections at normal neutrophils levels, while someone at 800 might not. She likes them over 700, however. Once you get at 200 or lower, the person is in real danger of serious infections, though.
Maybe my mother's hemoglobin is not higher when the blood isn't taken out of the Picc line -- I don't know. It's just a theory. They do it the right away by flushing and removing a little tube of blood before getting the sample. I am just grasping for straws. I think I am on the verge of losing my mind, too.
I'm happy your mother is getting off the prednisone. It's not good for her.
Health and happiness to you and your mother.
