Patrick Coghlan
Forum Replies Created
-
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 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, so I will now be starting OFEV.
This study pooled results from several trials and seems to indicate that OFEV patients who survive 2+ years appear to maintain a lower mortality rate for several additional years vs the placebo patients. One possible interpretation is that starting OFEV after there has been significant progression reduces the total benefit you might be able to achieve, since the mortality rates during the first 2 years (OVEV vs placebo) appear to be very similar.
-
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 congestion/crackling in my lungs though, which seems to have cleared up in the past 3-4 months and I’ve been taking Symbicort daily to reduce inflammation. My saturation has improved to the 95-97% range, depending on what I’m doing.
I also started doing deep breathing exercises to improve lung condition/fitness, which I feel also helps with O2 saturation.
I will be starting OFEV this week which hopefully will help keep things stable and minimize exacerbations in the future.
-
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 referred for a PFT with a pulmonologist who mentioned I had mild scarring which he would monitor…but never said anything about this being disease-related. I just viewed it as lung damage from previous lung infections.
In late 2021 I felt a cough starting without any sign of infection, and used Ventolin daily for about 2 weeks, but I think I should have went on Symbicort, as I ended up with bad lung congestion and SOB (not to mention a poor PFT result) for about 2 months.
After another PFT in early 2022, the pulmonologist suggested I go on OFEV, and that I have NSIP but not IPF.
In the mean time, I’ve continued with Symbicort (2x a.m. and 1x p.m.) as I feel it improves my lung function and control coughing. My lung congestion seems to have mostly cleared up and my Jan PFT results were better, although below 70%. I am hoping that OFEV helps stabilize my PFT numbers.
-
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.
-
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 am just planning 5 years at a time and taking the new meds.
-
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. I no longer snack or drink alcohol within 2 hours of bedtime.
I’ve been diagnosed with NSIP. My HRCT, examined by a few radiologists show some ground glass opacity and traction bronchietisis, and this was their conclusion. One radiologist noted a minor hiatus hernia and oesophageal thickening (18mm vs 4mm) on one side.
I had a bad exacerbation in the Fall, with a PFT at the onset (just happened to have been scheduled) with poor numbers and another PFT in Jan that showed a decline since 2019 but an improvement since the Fall. To help preserve lung function, I have started OFEV.
I’m curious if there are other similarities between my case and yours. I’ve been clearing my throat for years, but also develop a persistent cough after a viral infection. I’ve gone on Symbicort to clear the cough once it starts – a process that can take up to several months. Lung scarring was identified on a chest x-ray in 2018/2019.
I’m supposed to have a PFT scheduled in July. If things are stable, I won’t really know if it’s due to OFEV or GERD avoidance after reading your posts. Good question for the pulmonologist I guess.
-
@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.
-
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 patient begins the medication. Interpreting the graphs, most of the benefit will accrue to patients who start the medication in the early stages of their disease.
I am not familiar with Weibull vs exponential distribution, which have different predictions for patient survival.
Of the patient group that survives the initial 2 years, roughly half can expect to survive to the 10-year mark according to either method.
-
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 require a lot of medical information to understand what is going on with my lungs. I’ve developed an appreciation for all the training required to become a doctor. There are a lot of patients with complicated issues that must prove to be quite a balancing act for physicians.
-
That’s amazing to hear that your PFT numbers are very stable. Next step: reach the 10-year mark!
I’m starting OFEV next week with my next PFT in July. I’m hoping the medication also helps me reach the 10-year mark. Right now my view is everything after that is gravy.
-
That’s good to hear that people like yourself are seeing reduced progression for almost 5 years with IPF.
-
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 the result from that test, as my subsequent test was much better…although still lower than 2019).
-
She basically showed me a diagram involving:
- Lie on your back, hands on abdomen
- Breathe in through the nose and feel abdomen rise
- Breathe out through the nose
Repeat and try to work up to doing this for 5 minutes…which I find is roughly 30 cycles.