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Member
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Join Date: Oct 2009
Posts: 474
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Member
Join Date: Oct 2009
Posts: 474
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I had my thymectomy a year and a half ago. I was in the hospital for two weeks because I got weak, then had a collapsed lung, etc. I got very sick the following months after surgery- some people do. I was hospitalized 6 times during a 6month time span because I continually was too weak to eat/swallow/breathe on my own. I was put on a ventilator one of the times when I was hospitalized. Without the help of plasmapheresis I would be dead- i think, along with 2 specialists also said this. I am not antibody positive, yet did a thymoma.
Mestinon never worked for me, so i stopped taking it. I take prednisone, imuran and do IVIG monthly. With these three I am able to live a normal life, but it is not easy. Without the IVIG, i know I would be weak 24/7. I am grateful, though, for the effectiveness of IVIG, as plasmapheresis became too dangerous for me.
Im not sure if the thymectomy worked/is working, but i would say it almost killed me directly after the surgery, so be careful.
I tried cellcept, it was very nasty- and the imuran seems to have many less side effects.
If you have questions, lemme kno!
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