Hi Kate.
Bone marrow failure diseases are rare and PRCA is rare among bone marrow failure diseases, which is why you don't find a lot of information about it. I think that your immediate goals should be to get a confirmed diagnosis, see if you can find a doctor who has treated PRCA before (perhaps in Rochester, Buffalo, or New York City), and then to work with the doctor(s) to find a way to keep your red blood cell count up. PRCA may often be less critically life-threatening than other bone marrow failure diseases, but the lack of patients, doctors, and research is a disadvantage.
You're lucky to live in a state with many choices of excellent treatment centers. You might consider traveling further if you can get an evaluation and recommendation from a specialist with experience.
It's no surprise that you're exhausted. Our brains and bodies are powered by our hemoglobin. When your count is low, your energy is low. Transfusions solve the immediate problem but if you need transfusions often that's not a great long-term solution and can lead to iron overload that must also be treated.
I suggest that you read
this forum thread and
this forum thread and
this forum thread to get an idea how we use these forums to share information, and you're free to search or browse Marrowforums looking for more.
Watch this thread and you're sure to hear from
triumphe64, our most active PRCA forum member, but not the only one.
The
Aplastic Anemia & MDS International Foundation does its best to help PRCA patients and I suggest that you call them and ask what information they can provide to you. There's been some research on PRCA treatment (example: a
study of Zenapax (daclizumab) but you need an expert to tell you what the latest research tells us and to evaluate your specific case. The AA&MDSIF may be able to suggest how best you can learn more. Medical language can take a little work to understand, but I think it's important that you try to learn what you can about PRCA, if that's indeed what you have.