@ mola-tecta:
We live within 2 hours of the NIH in Bethesda, MD.
When I asked my mother's doctors about the rise from 7.5 to 10.5 three days after a transfusion of 1 unit of blood, I was told that normal people would only get about 1 point rise in blood, give or take. 3 points is just not possible. The best blood may get you 1.5 points higher at most. So, they said that my mother may be experiencing natural rises in blood on top of the transfusion. They really wouldn't take it any further because they just don't know. I can tell you this this just started happening a month ago. Now, the hematologist said that if you can two units of blood when you're 7.5 or so, you may get close to 10. But, here, we're talking only 1 unit, so it looks like a there was a natural rise in blood.
My mother's eGFR and creatinine is all over the map. Sometimes it's as low as 0.8 and rises up to 1.3 or so. The doctor said her kidneys are fine, and that it's simply due to the medication, lab differences, etc.
I don't think your mother's iron was that high (3000 or so) in the world of blood-transfused people. As long as her liver and heart are okay, you could have waited quite a while, I suppose. Ferritin levels can be all over the place when you're being transfused regularly. Best to get an average, I suppose, but that's not easy to do if the doctor doesn't order a ferritin test every other week, right?
My mother's hematologist says iron overload is problematic, but that it usually needs to fester in the body for a long time (years), unless the person already has a heart or liver issue. Who knows? She's had patients with very high levels of iron in the blood for years without any issues. Again, I just don't know.
At any rate, I think I am losing my mind. Things are what they are. It's not all bad news: her neutrophils are up and staying up (for several months). She does get some rises in blood, etc. And, finally, her organs are all fine, except for the brain bleed she had from her fall with low platelets (she fell getting out of bed and knocked her head hard on a piece of furniture). But, she has been recovering from it very well. The neurologist said her brain will heal over time. Her bleed could have been much, much worse.
It's all really hard...I can just accept. It just continues to be a waiting game.
I am wishing your mother all the best.
