Joyce and transplant

[Guest guest]

Hi Bruce,

Just a little correction here. Joyce was actually rejected for transplant way back in 2006 long before she developed pulmonary hypertension. The rejection for transplant had to do with her very complex health situation and diagnosis of mulitple auto-immune disorders. She had several factors which led the doctors to believe she would not be a good transplant candidate. Joyce didn't develop PH until a bit over a year ago. She thought it actually started late in the summer of 07 when her O2 needs began to increase.

Beth-Moderator

Fibrotic NSIP 06/06 UCTD 06/08

Re: Joyce

JoJoyce was a very long time member with PF but she developed a very badcase of Pulmonary Hypertension. She went through some great difficultyas the treatment included Flolan which has a very difficultadministration. Because of the Pulmonary Hypertension she was not atransplant candidate.Now, perhaps the easiest way for us to see if any of us are where youare would be for you to tell us where you are.As to not talking about transplants, I think you need to do a search onthe site as we have quite a few members who are on waiting lists todayand we've had members who had transplants, although not many. I atelunch with Gwynne on Tuesday and she had a transplant on April 3.As to me, my PFT's are quite low and have been and I'm on anywhere from2 lpm to as much as 4 or even 5 lpm in real exertion. However, much ofthe time I can still sit on the sofa or at a table in a

restaurantwithout oxygen. I just can't move ten feet without it.>> I was sorry to hear about Joyce but actually knew nothing about her.> What she had for how long and did she go for a transplant or not. I> actually don't know that about anyone because you all don't talk about> it. In order to relate to you it would be good to know where you are> and if any of you are where I am.>> It is frustrating to not know and I had hopped to garner information> about how this goes and what you do to cope, what your doc says,> updates. Bruce is a wealth of information but I am sure some of the> rest of you can share where you are and what is happening with

you.>