Guest guest Posted October 2, 2008 Report Share Posted October 2, 2008 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2008 Report Share Posted October 2, 2008 Jo Joyce was a very long time member with PF but she developed a very bad case of Pulmonary Hypertension. She went through some great difficulty as the treatment included Flolan which has a very difficult administration. Because of the Pulmonary Hypertension she was not a transplant candidate. Now, perhaps the easiest way for us to see if any of us are where you are would be for you to tell us where you are. As to not talking about transplants, I think you need to do a search on the site as we have quite a few members who are on waiting lists today and we've had members who had transplants, although not many. I ate lunch 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 from 2 lpm to as much as 4 or even 5 lpm in real exertion. However, much of the time I can still sit on the sofa or at a table in a restaurant without 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2008 Report Share Posted October 2, 2008 Jo ... at the bottom of email, most all of us have alongside our name, our state where we live, as well as age, and diagnosis and when diagnosed. As a newbie it will take awhile to "catch up". The newbies are learning and the "older" ones on the board are already very familiar with each other. If you see a post that brings up a question for you just reply to that person and you will get a reply back. We're a warm and supportive group here. Glad you joined us. This is the best place you can be with a dx of PF... What about you? Where are you and when were you diagnosed (dx)? How old are you and how are you doing? I hope well! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Joyce 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. Iactually don't know that about anyone because you all don't talk aboutit. In order to relate to you it would be good to know where you areand if any of you are where I am. It is frustrating to not know and I had hopped to garner informationabout 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 therest of you can share where you are and what is happening with you. Quote Link to comment Share on other sites More sharing options...
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