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Interstitial pulmonary fibrosis

Lung Health | Last Active: Nov 12, 2023 | Replies (48)

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@hikerguy62

I had several members on my mom's side of the family (including her) die from IPF. Hopefully you caught it soon enough to try and slow it down. At the time of her death (in 2003), the average life expectancy was 3-5 years. BUT, there are always exceptions, and hopefully those numbers have changed by now. Jerry Lewis had IPF for 16 years before he died (at the age of 91). And as they state on lung.org:

"No doctor can predict any one person's lifespan with PF. Survival rates that you see for the disease are based on population averages taken over many years. They cannot predict your individual experience and your prognosis with PF can differ depending on factors such as age, health, lifestyle, and severity of the disease at diagnosis."

I would hope there are better medications available in the 20 years since my mom died. I remember her being on prednisone and a few other meds.

I would recommend going to https://www.clinicaltrials.gov/, search for "pulmonary fibrosis" and look for clinical trials that are currently recruiting. When you see the search results, you can refine the search more by using filters on the left-hand side of the page.

To add to what @thisoldewe stated (the focus must be to 'Maintain the best function for as long as possible"), I would also recommend seeking out a pulmonologist NOW and start asking about how you can improve lung function, rather than wait until you start getting even a little breathless. Build up your lungs/heart now to give yourself better odds of living a longer (and better) life.

You should also look at the info found on the following websites:
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https://www.pulmonaryfibrosis.org/understanding-pff/about-pulmonary-fibrosis/what-is-pulmonary-fibrosis
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https://www.lung.org/lung-health-diseases/lung-disease-lookup/pulmonary-fibrosis
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Hope this helps.

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Replies to "I had several members on my mom's side of the family (including her) die from IPF...."

Thank you Hikerguy for your excellent comments; personal experience and excellent medical guidance is a sterling combination. Thank you too for the links.
By looking at your byline, it seems you are doing your best to fight the odds.
Well done!