Pulmonary Fibrosis

Hi Chuck, I am sorry to hear that you have pulmonary fibrosis, it’s always difficult and stressful to adjust to a health condition and trying to get all the details of what to expect, it really does help a lot to talk to others and gather information about what you need to know. I had a lung cancer diagnosis in the start of the pandemic so it was super stressful and scary and so many delays and longer waiting times for the doctors, somehow we learn to deal with it. I don’t know a lot about your condition but I do a lot of research to get more information about what is happening with new treatments and medications, it’s not perfect but it does help sometimes with coping. I think there’s some conversations here about pulmonary fibrosis so perhaps you can reach out to the people here to help you out, best wishes to you on your journey.

Thanks for responding! Yes it is both frustrating and scary to say the least. So sorry to hear about your diagnosis as well. There is just a lot of hurry-up and waiting. I just keep getting referred to others that take forever to get an appointment. Not a lot of answers so far, but hoping that there is some remedy. I will do some research on my own, at least to see what options are available.

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!!

Thanks for sharing. It good to hear about the rehab part, especially the exercise. It seems like with anything I do, I am trying to catch my breath. My doctor did make a referral to Mayo, but appointment is October 31st with a whole day of testing. I am hoping to find more answers then. I was wondering too about the diet as I am sure that will have to change as well. Thanks for the insight as it makes me feel a little better. Best of luck to your husband as I do feel his pain. Thank you!

Hope something here helps you.
https://www.google.com/search?q=natural+cures+for+pulmonary+fibrosis&gs_ivs=1
Regards,
Sagan

The Pulmonary Wellness foundation offers a free six week boot camp for people diagnosed with IPF, COPD, NTM, and other pulmonary conditions. It might be worth trying. Good luck to you.
https://pulmonarywellness.org/42-day-bootcamp/

Diagnosis of any serious lung disease always comes with more questions than answers. And usually a fair amount of fear of the unknown. That was how I felt in 2018 when I was (finally, after years of declining health) Bronchiectasis and 2 lung infections.

Mayo Connect and the wonderful people here were a great help to me, providing resources and support while I waited for answers from my doctors.
I see several people have provided links, here is one I often turn to:
https://www.lung.org/lung-health-diseases/lung-disease-lookup/pulmonary-fibrosis/patients/living-well-with-pulmonary-fibrosis
Good luck with your appointment at Mayo Clinic. I hear from friends living there that you need to prepare yourself to enter a major construction zone, so be sure to contact the Mayo Concierge Services for the latest updates the week of your appointment.
Hugs to you as you and your family adjust to this new reality.

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

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.

Also. Do a little research on the drugs Ofev and Esbriet. I believe Esbriet has less side effects. You need a good amount of protein with these drugs. We opted for 3x a day instead of one horse pill
Thought it would be easier on the stomach. Bless you and keep your chin up!!!