My main focus right now is getting down my iron levels. High iron is a result of blood transfusions. By our best guesses, I'm up around 100 transfusions but it may be a bit more. The "normal" range of ferritin levels in the body (which is a reflection of the iron in the body) is 10 – 250 ng/mL. My levels are usually over 1650 (they don't bother counting above this range). However this number doesn't really mean anything because the body will dramatically increase ferritin levels when the body is in crisis (called acute reactant phase) nor does it reflect how much iron is stored in my organs.
And there is the problem...iron stored in the organs. Left unchecked, it causes organ damage and increased infections. And studies have shown that reducing ferritin levels in the body to under 1000 ng/ml increases the success of transplants. Iron is a heavy metal and the body cannot get rid of it except through blood loss.
So what do I do?
(The black parts on my leg are either scarring or tape marks)
Five to six days a week, I wear a pump that is hooked up to a needle in my leg. The medication inside (Desferal) binds to the iron in my body and gets rid of it through the waste system. This is an effective way to get rid of iron but it is difficult. Desferal, traditionally, does not get a lot of compliance from patients. After all, a person has to jab a needle into themselves everyday...not a natural thing! The needles are expensive ($50-60/week for my specialty needles), the medication is expensive ($280/week but I have coverage) and the pumps are expensive ($120/week). Its hard to sleep with and it causes scarring and lumps that last for months. For many years, I was a low-compliance patient. But for the last several months, I have sucked it up. This is one of the things I can do to make a difference to the outcome of my transplant.
In the coming days, I will update y'all on my other preparations.
Lots of love hugs and kisses
E
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