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Living with a blood disorder sucks. April 17, 2009

Posted by Amy in anemia.
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It’s such a beautiful day, but I feel like crap.   I can tell my hemoglobin levels are low (low).   I would love to go out and work on the yard, but the act of walking seems too much, I feel like I will pass out.

I have had severe chronic anemia my whole life.  I have never had my hemoglobin levels test at higher than 8.  8 is considered very low, but for me, it is good, I generally feel ok at 8!  So, when I feel like I’m going to faint from walking 10 feet, I know it is very low.

The last time I went to my hematologist, my ferritin levels were 2.  This number indicates the amount of iron your body has in storage.   After months of IV iron infusions, nothing changed.  In most people, getting weekly infusions would bring their levels up, but nothing for me… so, I stopped treatment.   It wasn’t helping.  I did not enjoy being hooked up to an IV for an hour each week.  I was being treated at a cancer center, next to children and adults receiving chemo.   My problem seemed so minor compared to theirs.  Hemolytic anemia is nothing compared to that.  Yes, it is lifelong and can cause serious complications, including heart failure but right now I am generally healthy.  My main worry is that my children will develop it.  It’s an inherited condition, but so far they are showing no signs and have had normal test results.

So, this is my whine for today.  Boo. 😦

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Comments»

1. veganf - May 2, 2009

You’re not whining at all. What a hard chronic condition to have to live with, especially when no one seems to have a “cure”.


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