Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 Recentl, someone, I think you, gave me the link to access the caregivers support group. My wife hasn't been able to get through to it. I've not observed so I don't know what's happening. Could you please send it again and we'll keep trying. Thank You.......jim Subject: Re: Poking my nose inTo: Breathe-Support Date: Saturday, March 28, 2009, 3:52 AM Hi , So glad to see your nose poke in here! How was the HP conference? It is always amazing to meet lung transplant patients who are doing well, isn't it? Glad everything is holding steady with you! Poke your nose in more often! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: hkdawn <hkdawn (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 28, 2009 1:21:44 AMSubject: Poking my nose in Hello there, I've been gone from the group for a little bit. We just had our annual Hermansky-Pudlak Syndrome conference. It was GREAT!!!! Our first HPS transplant person was there - he's five years post transplant. And our most recent transplant person was there too. For any newbies since I haven't been online - I'm . I'm now 35 years old. I was diagnosed with HPS at 29 and the PF of HPS at 33. I"m in one of the Pirfenidone trials and so far am holding steady, knock on wood. And for everyone else - hello! Hermansky-Pudlak Syndrome albinism 02 / PF 06 www.heatherkirkwood .blogspot. com Quote Link to comment Share on other sites More sharing options...
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