I have Pulmonary Fibrosis. They like to do a lung biopsy to try to determine the cause (and get paid), but I can't understand how that would find exactly what caused it, or why it's even necessary. There is nothing they can do for it, we are on our own. I refused the biopsy because I didn't want them taking strips of bacon off my lungs in an open lung biopsy, I need all my lung tissue. With the needle biopsy they often don't get enough of a sample. My family doctor knew I had been casting various types of metal and grinding on it, as well as grinding on plaster sending the dust into the air. Used lots of asbestos as well as exposure to a lot of chemicals like cyanide, hydrofluoric and muratic acid, monomer, etc.
I know this is an old thread, this is for others that have been diagnosed with Pulmonary Fibrosis that might stumble on this. Right after I was diagnosed I read all the horror stories on the internet and was prepared to die at any time. 3 years came and went, then 5 years, then ten, now at 15 years and still here. I am on night oxygen and still function pretty well. I can't do a lot of things I'd like to do. I am getting tired and having other issues that may or my not be caused by the PF like burning, cold, tingling feet and I have passed out coughing many times in the first 5 years but the really bad cough has gotten better over the years. It's like my lungs have gone numb and I rarely ever cough now. I wish I wouldn't have read all the remarks from people that really don't have a clue. There is only one that knows, that's God. The average life expectancy might be close to what remeron stated, but that is just a number and a lot of people don't get diagnosed until the disease has gotten really bad. I was able to get away from the fumes, the dust and all the bad stuff that I breathed for 34 years. Had I continued to do that work there is no doubt in my mind I wouldn't be here now.
There is no doubt that it's a bad disease, I would love to do the things I once could. I know that inactivity is bad, the more I do, the more I'm able to do. It's a catch 22. I need to stay active but it's hard to get motivated. I learned of Pulmonary Rehab just a few years ago and think I'm going to try it. A structured exercise program is going to be easier with other people with breathing problems than going it alone, at least to get started.
When the Pulmonologist said I had Pulmonary Fibrosis he couldn't say how long I had to live, it all depended on how fast the disease progressed. They gave me prednisone in high doses which I threw away in under a week. They gave me inhalers with steroids in them that I couldn't use without getting thrush so those found the trash can as well. I think the thrush from the inhalers got in my lungs and made everything worse. They don't have a cure for PF and are really just guessing with all the steroids. The only thing I have continued to use is Albuterol breathing treatments to keep the tissue soft (in my mind, no doctor ever said breathing treatments keep lung tissue soft) and I like to keep an Albuterol puffer on me for when I get SOB which does happen quite often on exertion or sometime just sitting.
I guess to sum it up I would say to live while you are here and put you're faith in God your creator, not man. We're all terminal. I'm 62 years old and like I said, getting tired. I would have done some things differently had I have known I was going to live so long with this disease instead of listening to all the "experts" on the internet. That 3 to 5 years is not etched in stone as you can see, I'm living proof of that. I have taken a lot of herbs and supplements but don't know how much they helped. I have taken, or currently take, B12, Niacin, Fish Oil (not taking as much anymore because of mercury), Flax Seed Oil, Aloe Vera Gel Caps, Magnesium, some Potassium, CoQ10, Calcium, some Selenium and there is probably a couple I didn't mention.
It would be nice to hear from other PF patients, maybe I haven't been looking in the right places. If anyone wants to contact me I might not see it here, feel free to message me with the MedHelp messages at the top under my MedHelp. I usually check it once or twice a week.
God Bless and stay strong. Fight this disease by doing whatever you are able to do.
These statements are not approved by a Doctor. They are my own thoughts and things I have learned through personal experience. I wouldn't recommend doing anything without approval from a Doctor.
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