I would like to share a little about my experiences with Pulmonary Fibrosis (PF).
You will be told that lung transplant is the only treatment. I have discussed transplant briefly with my doctor in Arizona recently I have moved to the New England area and am in the process of setting up with a new doctor.. After looking at my options for transplant I don't think it would work for me. I am 56 and over weight so to make the list I would have to lose enough weight. A little about the list for those who don't know, when you make the list you are given a number, the number takes into account such things as weight, age, general health and your ability to pay for what the insurance won't. With my breathing difficulties it is very hard to do enough to lose the weight. Most likely take about 2 years. Assuming I am still alive, I would now have to stay with in 2 hours of the hospital performing the transplant. Meaning no real vacations, which is one of the things I enjoy. It can take a year or more to receive a transplant if you are lucky. Also do you realize that over half the people who get lung transplants die within 5 years. The lungs are the only organ that after transplant is still exposed to outside elements, because of breathing so they don't last. You have to take immunosuppressants so your body won't reject the lung (in most transplants you only get one). Meaning you must avoid going out because you might get exposed to something. The immunosuppressants have side effects so you will be on more pills for those as well. My past experience is that other than tylenol I seem to have bad reactions to most drugs. Nausea and diarrhea is what I usually get.
Doctors suggest lung transplants because they don't know what else to do, there really aren't any good treatments. They even recommend transplants for cystic fibrosis patients even though it will extend their lives only by a year or 2. Most CF patients would only live a year or 2 without the operation so why put them through all that? After all this is a major operation you will be in critical care for 2 weeks or more after the operation. When I weighed the pros and cons it's just not the kind of life I want. Don't want to put anyone down if the operation looks like it will work for you then do it.
As near as I can figure I first started getting sick with this when I was 26. Was working at an injection mold (plastics) factory and was exposed open hoppers from which the stuff would rain down on me. When I started to get ill I was misdiagnosed with rheumatoid arthritis. My research shows that this is not uncommon. At least it got me out of the factory.
It took nearly 30 years for a doctor to figure out what was wrong. During that time I would just get very sick 2 or 3 times a year with bronchitis and I would tire easily. Despite that I married raised 2 children, held a job and took care of my household. All of which I loved doing. So I think I've had a pretty good run, each day now is a blessing. My concern is that other people with this disease will be treated in much the same way I was. Which is given little or no information on how to take care of themselves and their equipment. It can be pretty scary when you are left alone with strange equipment and you don't know what to do.
Most people with PF die within 5 years of being diagnosed. I have come to believe that many of these deaths are due to improper maintenance of the oxygen equipment. I know how much I used to cough because my filters were dirty and don't get me started on the time I tried to clean my tubing. So I educated myself by going online and gathering all the information I could. I am willing to share what I know or just give an understanding ear if someone just wants to vent.
Things I do recommend
1 get some kind of portable oxygen, while I highly recommend a portable oxygen compressor because you can stay out longer, if all you can get are tanks get them and use them.
2 don't stay inside all the time get out even if it is just to go shopping. I like taking my dogs out to the dog park they get to run (I live in an apartment) and I can walk at my own speed.
3 exercise, you will feel better I have a gym attached to the laundry where I live so everytime I wash clothes 2 or 3 times a week I hit the gym. I don't set any records but I use the treadmill at a speed I can handle for 30 minutes. Then its time to move the clothes to the dryer. Now its time to lift weights, 20 reps 5 different exercises.
4 if possible stay with family if not look for ways to be with other people. Spending time with others will help with everything.
That's all I have for now.