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I have been diagnosed with IPF since 2014. I have always had a chronic cough but lately I cough more sputum and am borderline short of breath. I am on 2L of o2 at bedtime. Not sure if it helps or not. I have been involved in a research program at the University Of Iowa and took perfinidone for 1.6 years that did nothing?? I got started on OFEV and I can't really tell much difference other than it make sense me feel worse. I am also involved in pulmonary rehab program. My cardiologist thought maybe I should be evaluated at Mayo so he made reservations for me on 11-27-2018 at the pulmonary clinic.
I am struggling with the decision to go? I am wondering what Mayo is going to do different than what everything I have been through the past 5 years? We have good doctors here in Iowa and I am constantly being told there is no magic bullet and I understand. Hummmm..... Any one have any words of wisdom?
Replies to "I have been diagnosed with IPF since 2014. I have always had a chronic cough but..."
I'm not on O2 and do get short of breath when I do much of anything. How much is normal aging vs. IPF? I do not know, I've never been 80 before. All the best.
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Hi, @raincrowe - I've merged your post with this discussion so that you could continue your discussion in this thread called "Pulmonary Fibrosis*," and talk further with members like @robinson @wba3721 @mycatischi @frane1939 @windwalker and others.
I would add that generally Mayo Clinic will not accept patients where it is felt there is nothing further to add to their care. I trust that some of these members will have further insights for you from their experiences.
You mentioned treatment with Nintedanib (Ofev) and that you can't tell much difference. Wanted to confirm you were also saying it made you feel worse?