Pulmonary Fibrosis

I too have pulmonary fibrosis along with lung cancer.
Do you know the Pulmonary Fibrosis Foundation? Very informative. Here is link:
https://www.pulmonaryfibrosis.org/
You can also join the pulmonary fibrosis support group sponsored by the University of Minnesota. You can participate online with Zoom call. They hold meeting second Tuesday of the month. Info is on the Pulmonary Fibrosis Foundation site. Or Pulmonary Fibrosis Support Group of Minnesota, Minneapolis, MN, 55455
(612) 816-0731

Thank you so much! I have also heard that the University of Minnesota is very god for this disease as well. I will try and look up the zoom call too!

Thank you so much! I have also heard that the University of Minnesota is very god for this disease as well. I will try and look up the zoom call too!

I tried to get into this but it won't work for me. I guess I must need a new phone. I created user name and password but when I click on video, nothing there.

You might need to confirm your email address before you can access the videos. If that doesn't help, you could try emailing the site administrator.
breathe@pulmonarywellness.org
Good luck!

Hi Chuck, my husband 77 was just diagnosed with Pulmonary fibrosis, emphysema and 2ndary pulmonary hypertension. We live in a rural Michigan area and there are no pulmonary doctors. I called a pulmonologist who specializes in my husbands disease and the appointment was for 1 years from now. I told them that that was unacceptable and they got us in for November which is still too long. We will travel to Mayo clinic next week to be seen. Have you started pulmonary rehab? We don't have that here in the U P where we live either so we travel 1 1/2 hours to Wisconsin 2x a week for the next 12 weeks. Rehab is the only place that has given us some hope. If you have a Mayo near you, I would go there. They got us in fairly quickly. My husband is on 3L oxygen with activity. He is using treadmill at home and hand weights. We are slowly switching to a Mediterranean diet which is supposed to be anti inflammatory. He is on Esbriet to slow the progression. It is an entire lifestyle change and it is scary!!

Thank you for your post! I have been diagnosed with interstitial lung disease and I’m starting OFEV next week. The initial side effects are supposed to be just horrendous, so I’m not looking forward to this. Pulmonary rehabilitation is supposed to also begin, but my team hasn’t scheduled yet. I’d love to know how much it helps anyone! I was diagnosed after my second bout of Covid, and suffered 2 more times; only now have I been able to find help.

These posts are very helpful!

Don't think that way. Be positive! You may have no side effects from drug. Eat alot of protein and take the pill 1/2 way through your meal. IF you get bad side effects, try the Esbriet. Or some go on a lower dose.
Rehab has helped my husband but you have to also do exercises at home, not just on rehab days.