As usual, I"m so behind on blogging. This is something I really wanted to get up. We tried to do some live streaming from conference for the first time this year. Well, we ran into some unexpected technical difficulties, so much of the streaming didn't work. Luckily, perhaps the session I was hoping would work the most did somehow live stream and the HPS Network was able to archive it for future viewing.
This is Nancy and Rebecca, two HPSers that have had lung transplants, talking about their experiences. They talk about what to expect through the evaluation process as well as pre and post transplant. It's something anyone with Hermansky-Pudlak Syndrome hoping to have a lung transplant, or hoping to support someone through lung transplant, ought to see. Obviously they couldn't hit on everything in 45 minutes, but it's an awesome overview of what may be ahead.
For many of us (and possibly me) lung transplant may still not be an option. We need better treatments. We need a cure! But still, when I was first diagnosed, lung transplant centers had outright refused HPSers. We didn't even get evaluated. They were afraid of the bleeding disorder. Now, at least it's a option for some.
Here's the link: http://www.youtube.com/watch?v=Mlp-4wWYH6M