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Old Mon Oct 8, 2012, 07:50 PM
Kassandrans Kassandrans is offline
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Join Date: Oct 2012
Location: Los Angeles, CA
Posts: 3
Question New member--at the end of my rope

Hello everyone,

I was diagnosed in January with AA. I'm 22 and have been having severe anemia problems since I was 14 years old.

I have also dealt with chronic, late-stage Lyme Disease that required me to infuse 4 IV's a day for 2+ years. I just recently had my port taken out because it moved into my heart and was causing problems.

The VERY short version of my story is: I have been to hell and back a few times. In the past few months (I've been recovering from back surgery) all of my main Doctor's have been pushing me to talk to my hematologist about a BMT.

Their reason for this is because a few years ago I had an anaphylactic reaction to ferrlecit (IV iron). I have had many blood transfusions but my current hematologist (I've been seeing him since January) said he is not willing to give me more because of the risks associated with them. Especially because I'm so young, he doesn't want me to build antibodies to the blood.

I saw my hematologist last week to set up Iron IV's (they used Infed for the first time) and he had a TOTAL change of attitude regarding my situation. He was denying that he ever diagnosed me with AA and literally got mad at me for even asking about a BMT.

My question to everyone here is: what do you do when you're SO done fighting? I honestly can't deal with this. I have been hospitalized more times than I can even remember and I was just starting to get my life back after my back surgery in May and now all of this?

Then, to add another interesting twist; on Thursday, with only 10 minutes left of my Infed IV, I went into anaphylactic shock and my throat swelled. Luckily they reacted quickly so my throat didn't close, but it was scary.

I guess I'm looking for two things: does anyone know of a really good AA specialist in the Los Angeles area? And, what do you do when you're just done? I am only 22 years old and I feel so burnt out on all of this stuff.

Thank you for reading this and I look forward to hearing from some of you!

Kassandra
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