Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 We are very proud of the research we have funded so far. It is one of our strengths - check it out: http://www.pulmonaryfibrosis.org/funded.htm. We HAVE to find a cure! LeanneBruce Moreland wrote: Well, add to that the fact that the ONLY topic the American Lung Association seems to be interested in is sending direct mail to try to lead anti-smoking campaigns. I get all their solicitations and thats all they are. Front page of their site, no PF. Right now either PFF or CPF is funding more research on PF than the ALA with their small budgets. Far more. In fact with $43 million, ALA only spends $8 million on all research combined. They spend more than that on fund raising. They spend $24 million on direct mail. But obviously their strategy is working. The money is flowing in. Just none of it helping us.> > >> > >> > > I went today for some more testing. I went in for my> > echocardiagram and> > > the tech...first thing she said to me...."Are you still> > smoking?" ......> > > one of my Grumpies punched her right in the nose. I informed her> > that I> > > had never smoked and that Pulmonary Fibrosis was not caused by> > > smoking!!! I could see by the look on her face that she had no idea> > > what PF was. But, the rest of the test went fine. She was gentle> > and> > > nice. My chest wall and especially the sternum area are so> > tender. I> > > hate echos for that reason. I am sore tonight from it. She would> > not> > > give me info. I see the doc on the 4th...will know then.> > >> > > My 6 minute walk test was different than any I have ever done.> > Always> > > before they carried or pushed my portable, had me walk as slowly as> > > possible and kept me hooked to an oximeter.> > >> > > Here they said they followed the directions given by the American> > > Thoracic Society. They did not keep an oximeter on me. They told> > me to> > > push my own tank and walk at a pace that I would normally walk if I> > were> > > not sick. When I could no longer walk they would have me sit and> > take> > > my saturation reading. Well, I made it 1.48 minutes and had to> > stop.> > > My 02 was at 59. They said if they did it the way I always did it,> > I> > > would have been stopped at 88. Which means I would not have gotten> > out> > > the door into the hallway.> > >> > > To me, this is a much more realistic test. They had people every 10> > > feet or so and a guy right behind me with a wheelchair. Bizarre!> > But,> > > this test makes sense to me. The other one is so controlled and> > > unrealistic.> > >> > > I am so very tired. And a little scared. When I finished rehab in> > > August and began maintainence, I was walking 30 minutes on the> > treadmill> > > at 5L...plus other excersizes. A very few months later, I can not> > walk> > > 2 minutes.> > >> > > My whole life has changed. I don't drive, I barely get out of the> > house> > > at all.> > >> > > And YES....I too HATE this disease!!!> > >> > > I don't like this poor, pityful me. This is not me. I feel like> > some> > > alien has taken over my body and I have no control.> > >> > > Hugs, Joyce> > >> >> Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
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