I know I mentioned I'd let you know how the transplant evaluation follow up went, but it hasn't ended. I'm a rare type of cystic fibrosis patient, who has liver cirrhosis. It was a serious complication for me 5-6 years ago, because it caused me to internally hemorrhage. I nearly died, but thankfully, a skilled surgeon saved my life. My liver has been stable since then, but that doesn't guaruntee that it can withstand the plethora of anti-rejection medications and steroids I would take post-transplant, and since there are so few cystic fibrosis patients with liver cirrhosis (only 5% get any degree of liver disease, and only 2% of that 5% have it ever become life threatening), there's no protocol in place to deal with me. So Brigham & Women's is still discussing me, and testing me. If they end up denying me, the next course of action, would probably be to go to Pittsburgh University Medical Center. Eventually, I would have to move 9 hours from home until after the transplant. I'm praying it doesn't come to that, but I do know Pittsburgh does have experience with double lung/liver transplants, as well as double lung transplants done on patients with substantial liver disease, that have done well post transplant. I have spoken to their coordinator, and they're very positive. So despite feeling anxious about Boston, I know I have options. It was much scarier when Boston seemed like the be all end all.
Knitting is done sporadically, yarn and patterns are bought constantly :) I'll update about some of that...eventually. And talk about the other site I wanted to start, that I stalled on in the middle of.
oh kiddo. i'm so sorry. but i'm happy that you have options. i'm sending you good vibes!
Posted by: maryse | September 12, 2007 at 07:07 AM
Sucks that there's no good news so far, but there's no bad news either. Please do keep us posted!
Posted by: Jaimi | September 12, 2007 at 07:45 AM
Ok, so color me stupid, but I TOTALLY didn't know you had a knitting blog.
*swoon*
My ignorance amazes me. *snickers* Then again, I don't know if you ever head on over to mine either! LOL
Posted by: Tina M. | September 20, 2007 at 06:50 AM