Thank you again for those who have answered and shared their information in this thread. This forum is so quiet I wasn't sure if I would get any response at all. Glad to see this is not the case, and there are still some folks hanging around.
I didn't mean to try and farm pity with my dad's story, but I appreciate the stories and responses quite a bit. It also gives context as to why I'm so crazy when it comes to my mother's issue
I wasn't really experienced or aware enough to understand why my father was going through what he did - so now I am all the more determined to have a better understanding. I also firmly believe my mother's advocacy for my father helped him survive far longer than he would have otherwise, so I want to at least try and offer that to my mother as well.
My mother is also going to the same hematology center my dad went to... although she is seeing a different provider there, and they have completely remodeled the clinic so it's much nicer. She did have to see the same hematologist my father did while she was inpatient, though. That was... weird. But he didn't seem to remember her or the name at all.
Trying to have some hope still, but in a measured way. As of 2/7 my mother's neutrophils were 2.5. Hemoglobin seems to be staying steadier than I expected. She last got blood on 1/11. In the past month the hemoglobin has only gone from 9.4 to 8.3, with a few tiny rises/fluctuations that probably don't mean much, but feels significant since it happens so rarely. Hoping to see platelet base level rise a little bit more to see if they will hold above 20 without transfusions.
It's nice to see that things are staying somewhat the same even though the hematologist dropped the cyclosporine to 75mg x 2. I believe my mother has stopped the Exjade for now. I didn't realize her hematologist had bullied her into trying the Aranesp again, hoping it would work. It feels like he wants everything to happen so fast and keeps throwing more and more medications in the ring but it's hard to see if that approach has better merit due to the amount of significant side effects it creates.
Matthew42, I am still very glad you were able to be in touch with Dr. Young's team. He is the #1 name I see listed for AA expertise and it's great that they can still offer support even if they are not able to take your mother as a full patient. The *one* good thing I've seen about this disease is that even if it is stubborn, they have Plan Bs, Plan Cs, Plan Ds, etc. I am surprised my mother is still getting pentamidine too. The best I can find to understand it is that ATG affects T cells, and T cells are a complicated part of the whole multi-tiered immune system. So even though the neutrophil levels can be good, the lack of T cells still leaves the body open to certain types of infections, including a type of pneumonia caused by a very common fungus.
Marlene, how is John faring now? Your forum signature is from 2017, just curious how he is holding up after 5 years from then
Sally C, thank you for your story. It's amazing to read back and see how much Promacta has changed the prognosis for people with AA and other blood diseases. It's thanks to folks like Don that we learned this information.
On a brighter note, I was able to donate platelets again
Always impressed they get 3 bags of them out of me. Each bag is a single dose that could go to someone. It feels really good to be able to give something back.
Wishing the best for you all. Take care.