Hopeful,
Thank you for the response. However the time for being scrupulous with platelets has passed as my mother became refractory to platelets almost immediately after being first diagnosed with aplastic anemia. While in the hospital receiving ATG she no longer got any rise out of regular pooled platelets and thus she has has to have HLA-matched ones ever since.
Luckily she has several matches and they usually have them available when she needs them. She has really fantastic response to them, they can make her numbers go up between 50-100 depending on how many bags are available. (Sometimes one, sometimes two) Bless whoever is donating them to win the lottery. This is also why I've been so down about having a break from donating platelets myself.
I do agree that delaying a transfusion might be informative to see if they really are staying above 20 or not, but I do not think my mother or her doctor are interested in testing this out. Perhaps it is because she starts becoming symptomatic when they start to dip around 20. (She starts having nosebleeds, gum bleeds, more frequent bruising and petechiae) If it was my body, I would probably want to give delaying a try to see what happens. But it's not my choice, and I understand that her being older has some effect on the chances of more serious bleeding issues.
Matthew42,
While it's surprising to hear your mother's doctor say she no longer wants to treat her, I would say it's also probably a good thing that she knows her limits and will refer out to someone else with more expertise. It seems every patient with AA will have a very different course, and I think I read that most hematologists will only ever treat a handful of AA cases in their careers. I think she will be in good hands at the NIH, and lucky you get to see Dr. Young who is probably the most well known expert in AA.
Do you live within a reasonable distance to the NIH to be able to travel there?
I feel you in how scary and confusing this all can be. I'm sorry you and your mother are going through this. It's overwhelming just sitting and waiting and I feel so tied to every blood test, hoping or dreading whatever information it brings.
My mother has had similar responses to RBC transfusions as your mother. One bag can give her 2+ points of hemoglobin. For example the last time she was given blood her Hgb was 7.5 and then after transfusion several days later was 9.4. Another time it was 7.8 and she was given a transfusion and several days later tested at 10.6. I think sometimes it has to do with the freshness of the blood, and maybe the hemoglobin levels of the donor? Who knows.
Does your mother get the pentamidine drip every month? My mother has had them monthly for the past six months and I have no proof of whether it drops any levels down but I feel like a few times I noticed a faster drop afterwards.
I had kind of a scare this past week as I noticed my mother's kidney function had declined for some reason. Creatinine at 1.9, declining eGFR. It really worried me especially with the Exjade having very large warnings about causing kidney damage. Before starting it my mother's kidney functions were perfectly normal. It also scares me that I am the only one who noticed this??? I made my mom bring it up to a nurse who I assume ran it by the doctor's office and they only ordered a bag of saline to help. The next blood test it seemed to have improved a bit (dropped the creatinine to 1.6) but it still worries me a lot, enough that I asked my mother to also drop the Exjade dose to 1000mg instead of 1500mg to see if it improves.
I wish they would take the ferritin and iron levels to see if they have improved at all. My mother asked about them but they have not bothered testing them since the very beginning of December??
Maybe I really am just losing my mind
Thank you both for your responses and the discussions which I find really important and grounding as we continue on this mess of a journey.