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RE: Age, Dx and Location
 Posted by joanne on 10/28/2003 2:56:10 PM (368 views)
   [Age, Dx, Location]  [PHA Discussion Board Archive]
 In reply to RE: Age, Dx and Location posted by michiganmary on 10/3/2003 8:38:26 PM (520 views) 

Dear Mary,
My name is Joanne and I have PH related to some kind of connective tissue disease. Its almost a year now, and I'm finally on Tracleer and trying to get settled with a doctor that my HMO will approve. They want me to travel to Cleveland Clinic, even though we have a national center of excellence right in our backyard in Pittsburgh. I'm wondering how you handle the travel? How long did you stay in Cleveland after your transplant? How did you handle emergencies (not many I hope)? How long were you followed there before the transplant?
I'm so used knowing what to do or at least where to find the answers, and I find myself in the unfamiliar and very scary territory of not knowing what comes next.
If you have a little time, would you please right back? I would appreciate hearing from someone who have been through it. Thanks.


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