[Bob Chiu]

I’m 74 yrs old and peak weight was 240lbs. Over 2 yrs of taking Ofev and Cellcept my weight went to 185 lbs just before transplant. After transplant in May 2022 now my weight is 167 lb but I believe it’s stablizing as my body starts to recover from the surgery. Throughout those 2 years I exercise everyday and led a normal life albeit carrying oxygen everywhere.

I think most of us will lose weight due to lack of oxygen, medications, diarrhea, etc., And the way to deal with it is to find ways to feed enough calories despite lack of appetite and exercise (however mild or little.) For me I ate even there was no appetite. Actually initially I didn’t mind the weight loss as I ned to get to an BMI of less than 30 in order to be considered a transplant candidate.

[Bob Chiu]

Hi Pamela,

I was short of breath whenever I climb stairs or steep inclines starting in 2003. It would took me 6 hours to climb a mountain while my buddies too 2 or 3.  My oxygen was 97.  However, I continued life as normal and continued to play golf actively. It was not until 16 years later, in 2019 that I need to use supplemental oxygen, and began to think about how to deal with the disease (NSIP.)

From what I read it sounds like you are like me 16 years ago. So don’t think too much about it and stress yourself for something that may not affect your normal life for many years. See your pulmonologist  regularly, avoid catching a cold/flu/pneumonia/CoVID (for they will exacerbate your condition.) This you can actively avoid.

Meanwhile medical sciences continue to advance and in 5, 10, 16 years who knows what new medications would be available? I am told Ofev is shown to delay lung fibrosis by 50% for many people.

I really don’t want you to let anxiety to affect your normal life . It seems to me you are in an early stage.

[Bob Chiu]

At 74 and using 10 LPM of oxygen, I find it comforting to read Patricia Meadows’ post above, that 99% of patients pass away gently and without panic and gasping.

To echo the findings at Alberta, one of my doctors told me that air consists of 71% nitrogen and 21% oxygen.  If a person inhales pure nitrogen, he is likely to lapse into unconsciousness and die. As our lungs take in less and less oxygen, naturally more and more nitrogen will fill the lungs.  However, the speed and pace of lung function decline vary from person to person and different people will experience different symptoms during this long process. But at the very end, as more nitrogen is taken in, the person will likely sleep more and more, be weakened by the lack of exercise, and finally lapses into a long sleep and perhaps die during the sleep.

Anyway, it has taken me 19 years to get to needing 10 LPM from the point I found myself short of breath.  I stopped playing golf 3 years ago but I still exercise 3 times a day for a total of 1.5 hours. I feel that exercise is very important in keeping our body strong so that we may have less or minor symptoms.

[Bob Chiu]

Over the years I used several oxygen concentrators. At first I used the Inogen At Home, then the Philips Everflo. Both can go up to 5LPM. Both are relatively quiet. The Inogen gives out a “pop” sound every 5 seconds, but it’s not too loud and I can get used to it. The Everflo gives a continuous level of noise which basically fades into white noise and that one was my favorite.

As my need for oxygen increases I was prescribed to use a 10LPM machines. My supplier provided me with the Respironics Millennium M10. However it is really loud. I guess as the LPM goes up the noise level goes up exponentially. For a period of time I had to move the unit away from the TV room as it interferes with TV watching even with the volume turned up. Then at night I had to move the unit far away from the bedroom.

After some complaints and discussions, the technician from the oxygen supplier suggested to hook up my two 5 LPM units with a “Y” connecting tube. The oxygen from the two machines jets out from the short end of the “Y” and the combined oxygen jets out through the long end to the cannula. The end result is that I get my 10 LPM and also a quiet environment.

[Bob Chiu]

Hi Barry,

If you are being diagnosed just now, you may have many many years ahead of you because the fibrosis can develop slowly. For me it progressed over 15 years and a friend over 19 years. Therefore it is important to live a normal life and not worry too much about what will happen years from now. Current medications are proving to delay fibrotic progress by 50% or more. Who knows, in a few years new and better drugs may be introduced.  In the meantime, besides following doctor’s orders, It’s important to exercise to keep the body strong, and do not be stingy with the use of supplemental oxygen if needed.