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I just sort of stumbled upon this and started reading. It is good to know that I am not alone but I am sorry that others have the same problems I do.

So, I guess I should tell you a little of what I have had going on. I have had issues with anemia for several years. I had endometriosis and that was thought to be the cause of it all at first. Then I had my son 10 years ago and I was OK for a while. My hemoglobin stayed at around 9.5 until a year ago. Then it started dropping. In January of last year after trying to just deal with it, I went, was forced to go by my mom in law, to the doctor. My hemoglobin was 5. Yeah, I got in lots of trouble. I had 4 units of blood and a ton of tests.

It was decided by my hematologist that I had iron deficient anemia. My iron stores were nonexistent. I was told that my condition at the time I was admitted to the hospital was "not compatible with life". So, after my many tests to see if there was bleeding anywhere, there was not. I was told that My body does not absorb iron. My red blood cells hemolyzed. My bone marrow does not make red cells as it should.

For the first month I had to have blood transfusions every third week. Then it became every other week until late March. By the end of March I had dropped down to a hemoglobin of 3 and was being transfused every week. They did a CT scan and discovered that my spleen was 5 times the size it should be. It was removed in April. Much better. I have had only 3 transfusions since April 2008. I do have to have weekly iron infusions as my iron stores will not rise above 2.

When I put all of that together I still don't get it. My hematologist/oncologist says it might be leukemia but he doesn't want to test just yet because I have no immune system. I am in no hurry for that one.

Most of the time my legs hurt but on the nights I have iron and the day after I feel like my bones are going to explode. Now I have started having reactions to the iron (trouble breathing, passing out). They give pre meds that work but then this week another problem. I didn't notice it I guess, but I must have looked bad because the nurse kinda freaked. She said I was pale and seemed to short of breath. So another CT. Now there is a spot on my right lung that was not there before. My hemoglobin is way down again, 6.8. We are going to talk about all of this Thursday.

Has anyone dealt with any of this before? Oh, and no I do not smoke. Never have. But right now I can hardly breath, my heart is racing and I can hear my heart beat so loud in my ears that I can barely hear anything else so I am pretty sure that my hemoglobin has dropped more.

I guess I am just wondering if I am alone. Thoughts and opinions welcome.
Thank you





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