I have received new information within the last few days. I said I'd update when I had new information. They want to do the plasmapheresis...again. Very dissappointed as it is another 10-11 day stay in the hospital again. that's like a week and a half. I hate that I have to do that. Leave my family for 11 days. Seeing no one but nurses and doctors for 11 days. Makes me want to go nuts!
A few days ago I went and seen my original pulmonologist who sent me to OSU to be treated. He wondered why I wasn't on the list yet and he told me that the plasmapheresis is an experimental treatment. Said that it was useful in some cases like leukemia patients but not particularly helpful in my case with what I have. So it makes me wonder what the hell they think they are doing at OSU. I don't understand why they would do something that probably isn't going to work in the first place! Dr. Allan also wanted me to get a sleep study done since I have sometimes stopped breathing while I'm sleeping.
With everything I'm starting to learn I'm starting to think I'm being used as a guinea pig for experimental treatments they want to do. I don't particularly feel that great about that. It really starts to piss me off quite honestly. I want to get better and soon but it's like they keep putting this off...the transplant that is. Well that's all I have for now...stay tuned for more ^_^