Pulmonary Fibrosis
Hello, my name is Chuck Walerius, and I have recently been diagnosed with pulmonary fibrosis, which has put me on oxygen 24/7. I am 70 years old and WAS very active. My appointment with my referral is 2 months away yet, and I am wondering what will happen next? Does anyone have some advice? Thanks, and I am looking forward to joining the group.
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It's hard I know. I'm not the one with IPF but my husband is. I do all the research and don't tell him any of the bad stuff. I don't want to put it into his mind at all. Our minds are very powerful. I pray alot and so far so good. We go back to Mayo next Monday to deal with his 2ndary pulmonary hypertension. Got liver enzymes back yesterday and they were high. This is a nasty disease and I pray they can find a cure.
As previously stated, not everybody experiences major side effects from Ofev. Some experience none at all and others have mild or moderate effects. The company will always tell you these are "manageable". Take it as prescribed, with high-protein meals etc.. If the side effects prove to be a serious issue, see about lowering the dose from 150mg/day to 100mg/day. You'll see many people on this site who have done that.
Your doc has clearly determined that it's serious enough to warrant putting you on Ofev so pay attention to what the doc says.
As for pulmonary rehab, this will help you build up your strength and endurance. You have to take it seriously. Exercise every day, at home or wherever you happen to be. If the instructions say "repeat 3 times a day", do it. You won't get any real benefit from doing this half-heartedly.
Also, and this might be hard to take in, but pulmonary rehab will not improve lung function, per se. It enables you to do more with the lung function you have left. The scarring from ILD is permanent and irreversible. That was a very bitter pill for me to swallow because I really thought I would be able to shake off a lot of the worst of it.
You may see a very slight improvement in your PFT numbers if any inflammation goes down but that depends on whether you have inflammation or how much there is.
I wish you well in dealing with it and I hope you have a strong, steady support network.
Thank you! Yes, this is extremely difficult because I have been active my entire life, working out three times a week; sometimes with a trainer. I felt so great!
It’s so strange to not feel strong and confident. This disease arrived right out of the blue!
Stay active, exercise and get out for walks in good weather. Your doctor will probably want to start you on Ofev, which has unpleasant side effects so it's your decision. Quality of life matters. Im about 14 months into my diagnosis of IPF. Started Ofev about 5 months ago and so far have been managing very well.