I experienced lower abdominal cramping last night and have been keeping a list of foods that I suspect might be the cause.  Since I had part of a chocolate bar yesterday I’m thinking I might have to quit this treat.

I certainly have to wonder if the reflux I’ve had on and off might have been a factor, but with NSIP (my diagnosis) they don’t really know what the trigger could be, so I’m making sure that I don’t go to bed or lie down until at least 3 hours after I’ve had food, including alcohol, in case they were contributing factors.

In the mean time, I… Read more

Poker is just social (2x week online) but I was finding that my chest felt a bit congested in the morning after having a few drinks the night before, so I’ve just eliminated it for now.  It will give my liver a break now that it has to deal with OFEV.  Going for my first blood test in 2 weeks.

I had a barium test about 30 years ago which was normal, but things could have changed.  I’ve certainly had some reflux over the years and a radiologist noted I have a small hiatus hernia, which probably doesn’t help.

For now I’m cutting out snacks and and drinks after 8 p.m., which means no more Scotch at the poker table 🙁

You will probably have a PFT (pulmonary function test) which determines your lung capacity as a %.

Anything above 70% is generally good.  The test is performed at regular intervals to determine if you are stable or if you may require medication.

@lmacguire I’ve been focused on this and other posts of yours, especially how your numbers have been stable now that you’re being treated for GERD.

I have had occasional mild heartburn at bedtime, but usually just took a bit of Pepto and never thought much about it.  I didn’t even mention it to the pulmonologist, but now you have me thinking. … Read more

@rachel-norene I guess that includes hamburgers cooked on the BBQ?

@steve-dragoo Yes, I’m thinking it may be time to refrain from processed meats, bacon anyway.

I would suggest you undergo a PFT (pulmonary function test), which will provide a baseline number for your total lung capacity.

Initially, my baseline was 72% (of expected?) and my pulmonologist said I had mild scarring and that he would just continue to monitor.  A couple of years later I had an exacerbation and dropped into the 60-range,… Read more

What types of protein do you find works well?  An egg with breakfast?  A PB sandwich?  Yogurt?

What types to avoid?  Bacon (love it but…)?  Deli meats?

There are some useful graphs in this IPF study.

Both drugs seem to add several years to the average survival time for patients who survive at least 2 years.  There doesn’t seem to be a significant difference in mortality during the first 2 years.  I can only assume this is a result of the amount of disease progression that has occurred when a… Read more

Symbicort is an inhaled corticosteroid.  I took it for years (decades?) when a persistent cough developed after a viral infection until the cough stopped.

There are something like 200+ types of ILD.  Prednisone is used for certain types and/or certain situations including (I think) acute inflammation.

Like most of us, I’m not a doctor, but… Read more

It can be either.  Depending on your particular disease, fibrosis thickens the walls around the air sacs and makes them less permeable to oxygen transfer.

It can also be due to inflammation/congestion.  Back in the Fall I started having dyspnea (shortness of breath) and just simple exertion dropped my saturation to 88%.  I had a lot of… Read more

That’s amazing to hear that your PFT numbers are very stable.  Next step: reach the 10-year mark!

That’s good to hear that people like yourself are seeing reduced progression for almost 5 years with IPF.

These forums were created about 4 years ago…about the time that OFEV trials were just finishing, I believe.

I’m very interested to hear from participants with various forms of PF who’ve been on OFEV pretty much since the beginning to hear how it has helped them.

For years I would get a nagging cough after any kind lung infection that dragged on for months, and would always go on Symbicort until the cough went away…sometimes for 2-3 months.  I don’t even remember how long ago (10+ years) this cycle started.

In 2019, after getting the flu and a bad cough, a chest x-ray revealed some scarring.  I was… Read more

Things like exacerbations can certainly drop your numbers.  I didn’t even know the term exacerbation last Fall when my lungs became congested for about 2 months.  I just happened to have a PFT scheduled near the start of that episode and I’m sure my numbers were awful (pulmonologist wouldn’t even give them to me and said he was going to discount… Read more

Interesting discussion.  I’m about to start OFEV in a few weeks so it’s definitely something I’ll ask the pulmonologist about if I start having issues.

https://scienmag.com/ai-discovered-anti-fibrotic-product-candidate-enters-phase-1-human-clinical-trial/

She basically showed me a diagram involving:

1. Lie on your back, hands on abdomen
2. Breathe in through the nose and feel abdomen rise
3. Breathe out through the nose

Repeat and try to work up to doing this for 5 minutes…which I find is roughly 30 cycles.

A friend of mine suggested I start doing (yoga) deep-breathing exercises to help improve lung health.

I started last week and am working my way up to  5 min/day.  It’s not easy.  Fibrotic lungs don’t like to stretch!

Anyone else trying this?

I was recently diagnosed with NSIP.  Lung capacity dropped below 70% but previously had been told that my progression was mild.

I’d be interested in hearing from anyone else that has been prescribed OFEV for NSIP and how the benefits compare to someone taking it for IPF, given that the prognosis for NSIP tends to be slightly more positive.