Interstitial pulmonary fibrosis

Hi ch47!
Have you contacted the 'Heart & Lung Ass'n?
Getting as much input is the best way forward, including Connect of course.
You are so right; the focus must be to 'Maintain the best function for as long as possible".
Hope you are doing well yourself, you both have much on your plates.
Take best care of each other!
All the best.

I have had ILD for three years and have been taking CellCept. I feel great and the disease has not worsened.

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.

Mary, thank goodness you are feeling well! Have not heard of cellcept; another road to travel down for information!
Stay well, thanks, and will share more info with all

Take great of care of yourself, get a good doctor and be proactive. The best advice my pulmonologist gave me? “walking is super important.”

Hi y’all and thank you for all the support and information…

My husband is almost 76, non smoker ( ever), non drinker, walks the doggie on trails between 1.5-2 miles every morning and when weather is not so hot, 1 mile evening as well. Plays golf 3 days a week. Not overweight and I try to feed him/us very healthy meals.

Such a shock…I researched trials and after finding lots of info about that idea, as well as availability and location issues, decided that taking such a huge chance to get the good pill wasn’t worth it

We have a good pulmonologist; he asked for her opinion; she recommended Ofev, between the two approved ipf meds…more money, but less potential side effects than the other one I can’t remember the name of…

Ofev has been around for about 8 years…no cure, just potential slowing. Good information support system. Of course, there is no way to determine life expectancy; every one is different.

Was tough to convince him to take it, price, yes, but nasty side effects
( bad diarrhea is very/most common).

I just went to a modified BRAT diet at start of medication-easier to add food than take away. So far, so good. Eating most things now and no problem.

Has had recent ct w/contrast and so far, no change. Second liver test was good. If he gets a third good monthly test, then move to every 3 months.

Primary care doc found it after
I “ forced “ him to go to doc for little dry cough. Good guy!

Took antibiotics and has cleared cough, and stayed clear. We are working hard on gerd, which we both have. That can be a trigger.

We both continue to research; he makes me a little (lot?) crazy that he thinks zink and some other things mixed together will heal lungs. Mouse Petri dish study…

Discussed that with doctor and she already knew of the study, and said he needs a year on the meds to see what is or is not happening without interference from other chemicals.

So hard, because he feels fine, but now this thing is shadowing our every day. Try to feel grateful that he feels well, no pain and is active.

For those that have followed me a bit, and new posters, thank you-I think it is very helpful to be able to share and vent on sone level, to people who understand…

❤️❤️❤️

Ps so sorry this medication was not available sooner for your family…

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!

And don't forget to walk, if possible. At the beginning of my ILD, I would look at a hill and feel defeated. Now I am able to climb the hill. Make sure you have a good doctor. There are online lung measurement gadgets that you can order to test yourself. Are you aware of any?

Have you heard of CellCept to treat ILD and other lung diseases? I am on it and it has helped keep my ILD at bay and I feel great. My lung function tests are all normal after being diagnosed three years ago.

I was diagnosed with ILD a few years ago. Really didn't think it was too bad but early this year, March, I had pneumonia and that really hit me hard. I'm still trying to get back my stamina. I've been through pulmonary rehab and now I'm going to drive to a wellness center to use their exercise equipment. I see a pulmonologist at Mayo in Rochester MN and she has suggested Ofev. I don't like the idea of the stomach issues and the cost. How much does the CellCept cost and are there any side effects? I am trying to walk more too. Now I am able to walk for 10 minutes at a decent pace but have a ways to go yet.