Quote:
Originally Posted by Neil Cuadra
Matthew,
There are a few approaches doctors can use to deal with patients who become refractory to transfusions, meaning that the transfusions aren't as effective, don't last as long, or "don't take" at all. For example, it could mean doing additional testing of blood or platelets, or limiting the number of donors.
Even if your mother doesn't (yet) need treatment for iron overload, I hope her iron level is being tested regularly, so you'll know if it becomes too high. This is another area where different doctors have different opinions about when to start treatment, but monitoring is the key.
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Thank you so much for your response.
My mother doesn't have antibodies yet (she's only had transfusions for 6-7 months), but the hematologist mentioned them. She said some never get antibodies even after years of transfusions, while others may get them in less than a year. Also, a lot of people develop weak antibodies and continue to have them, which are not problematic. She said it's when they get high that you run into issues. That said, there are usually ways to effectively treat high antibodies, as you said above. It's just another concern we have, on top of the iron overload.
As far as the iron overload is concerned, she monitors her liver regularly, as she said that is the organ most impacted by iron overload (monitors enzymes). The heart is, too, but it takes years for iron to build up in the heart and cause real issues in people with healthy hearts. She told us iron overload can also lead to blood sugar issues once in a while, but she will monitor glucose.