Guest guest Posted October 31, 2008 Report Share Posted October 31, 2008 Terri, Welcome to the group! I'm sorry that you had reason to look for us but since you did I'm glad you found us! I am also a lifelong non-smoker. It seems very unfair doesn't it? Not smoking should at least entitle us to a free pass from lung disease, don't you think? You raised so many issues I scarely no where to begin. But to begin with the first thing you brought up...the nausea. If you've got gallstones or an inflamed gallbladder that can definitely cause nausea. So can NAC, so can prednisone and prednisone weaning. I had terrible heartburn when I took NAC and my gastroenterologist told me in no uncertain terms to stop taking it. He feels strongly that it can aggravate existing GERD. What did your gallbladder ultrasound show? As for the dry cough, it is mentioned in an awful lot of places when IPF is talked about. It is a hallmark symptom and almost all of us have it to some extent. As for the respiratory therapist that told you that we are just like COPD patients when it comes to end stage disease is just dead wrong. Most respiratory therapists have not seen enough PF to be able to talk intelligently about it. I'm not clear on where you live but if you're in the US and you have access to a university medical center with an interstitial lung disease department it would be worth the effort to get yourself evaluated. Bring your medical records, your biopsy slides and get another opinion. Who told you 57 is too old for a double lung transplant? Is that something you decided for yourself? We've had two women on this board that age or older who've been transplanted within the last 12 months or so. 57 is young! Yes I agree that being a trained scientist can be a drawback of sorts when it comes to this type of diagnosis. Please know that you can't necessarily exptrapolate from the scientific literature and apply it directly to your situation. For instance, the stats on intubation. Please don't torment yourself worrying about things like this. We have people on this site who have defied the doctors predictions and the statistics and going about their daily lives in contradiction to what the odds said. Peggy likes to say that none of us comes with an expiration date and it's true. Here is what I would suggest. Read through the archives of this board. There is alot of collective wisdom here. Of people who actually live with this disease day in and day out. Get yourself seen (if possible) at a university medical center for a second opinion. Take really really good care of yourself. Eat well, and rest when you need to. Keep your O2 levels above 90. Buy yourself an oximeter so that you know for sure what your saturations are. Thank you for sharing that you are going through something similar energy wise with the change of seasons. It may indeed be as simple as that. I'll keep my fingers crossed. I see my doctor at Duke at the end of November so we'll see what my pulmonary function test says and what he says then. Again welcome to the board, we're glad you're here! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle Quote Link to comment Share on other sites More sharing options...
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