I appreciate the kindness from you both. It's been a real heartbreaking experience for my family, as you both know. I know your pain, mola-tecta. And dear Marlene, you lived this many years ago with your husband. You know all about it. Bless you both.
To see Dr. Young's team, you make a call and explain the situation. You must have severe or very severe aplastic anemia. If you have moderate aplastic anemia, you can't be seen (was told that on the phone). If they agree to review your case, you must have your current hematologist send all aplastic anemia records (you have to fax them the info). That's all you have to do. If, then, Dr. Young's team thinks your current treatment will likely end up working, he may just consult with you online or with your current hematologist to make sure your dosage and medications are correct, or give recommendations based on your bone marrow biopsy. On the other hand, if he thinks your current treatment was not ideal, or that you might not get off transfusions with the current treatment, he will likely take you on as a full-time patient. That's what I was told on the phone. I was told he has a lot of tricks in the trade.
In addition, they told me that the neutrophils staying up for the past few months is a really good sign, but that's all. The sudden drops in blood and platelets could just be a sign of recovery, or just nothing at all. I am not to worry about it. It could be her body is "transitioning" (but not said with assurance). I was told very clearly that the "neutrophil line" is just as important as the blood and platelet lines. It signifies recovery as much as the others do.
@mola-tecta: your mother's neutrophil count is fantastic!! By the way, what is your mother's bilirubin and creatinine? My mother's hematologist told us not to worry about the eFGR. It's the creatinine that is most important. As long as it's under 2, it's nothing to worry about. It's the medicine that's elevating it. There is also the possibility of false readings, too, she said, which are very common with bilirubin tests. Finally, as long as the bilirubin is under 3.5, we were told not to worry. It's the cyclosporine and Promacta making it go up. If bilirubin starts going to 4 or more, then there might be a problem. Just telling you what we were told.
My mother's platelets are real low again (7), but I am not going to worry - I can't, as it won't change anything. Some man with ITP (autoimmune low platelet disease) has lived with a platelet count of 4 for over 25 years! No medicines help him. He refuses to live in fear, and he is just fine. We must stop living in fear.
All the best to you both.
