Aa
pulmonary fibrosis
is there a life expectancy for pulmonary fibrosis? if so ,what is the average life span a person can live with this disease?
forgot to mention Vitamin E, it might be an important one? I take it every day and have for years. Been on Flax Seed Oil, Aloe, Callcium and the Vitamin E for 13 or 14 years
I know coughing will make me pass out so it seems like the best thing is try not to cough. It seems like lung infections and colds would irritate and possibly cause the scarring to accelerate. I try to avoid crowded places, especially during cold/flu season and sick people. If a sick Grandkid is over I use the hand sanitizer a few times and shower when they leave. As soon as I even think a cold MIGHT be coming on I take a zinc lozenge right away. Then just a few more (3) over the next couple of days. I take some gulps of honey and some vitamin C and I would take 2 selenium for one or 2 days, it's supposed to be one of those super supplements. I also get a flu shot every year and got a pneumonia shot a couple years after being diagnosed, then in 5 years I got the booster. my GP Doctor didn't even know you could get a booster. When I asked him he said "Nope, You only need that once and your done." He looked it up and gave me the booster.
You've gotta do some research on your meds. Some prescriptions can make it harder to breathe, if I look it up and read that it can do that I can ask for something else if (should say when) I'm having trouble breathing.
Oh yeah, Since there are so many germs on doors and counter tops, especially at places like Doctors Offices, I know they clean good but what do they miss and do they do it several times a day? What about the pen at the pharmacy or the gas pump Handle? Do yourself a favor, don't worry about it! Get yourself a few small bottles of hand sanitizer and a big one for home. Carry it with you everywhere you go. Problem solved. The only thing I haven't done is wear a mask. It probably wouldn't help anyway.
I've gotta say i have had 2 very minor head colds that were gone within 1-2 days when my wife's colds turned into bronchitis both times, and zero chest colds since 2001. I really believe that has helped the PF more than anything. I have heard from one person for sure I can remember saying her PF got worse after a bad lung infection. I have never had a chance to ask anyone else.
Don't know if this will help anyone. It's all just common sense things I've picked up over the past 15 years with PF. Sometimes you can overlook things, this is just food for thought. They say that it's just blind luck, some people just die sooner than others. I'm sure that's true for some people or, maybe they didn't get diagnosed before the disease had progressed. I just have to wonder how many Doctors or even Patients think about the simple stuff? Maybe you haven't had it that long and haven't had a chance to gather your thoughts yet. It is a shock to hear a Doctor say you are terminally ill and average life expectancy is 3 years. I would be tickled pink to get the last laugh on this terrible disease. I pray God will bless us and there will be a cure, besides a lung transplant with it's own terrible problems. We would be better off with cancer, at least there are a lot of people working hard on that and some people get cured. as far as I know nobody has ever been cured of PF. The only guarantee is, it will progress. I have no intention of making it easy on the disease. Doctors look you in the eye and say they can't help. We have to try and help ourselves. there are online companies that have sold herbs for many years and are good quality. Much cheaper than the Big Health Food Stores. I would mention where i get mine but I don't want to cloud the issue. if you would like to know message me.
I know coughing will make me pass out so it seems like the best thing is try not to cough. It seems like lung infections and colds would irritate and possibly cause the scarring to accelerate. I try to avoid crowded places, especially during cold/flu season and sick people. If a sick Grandkid is over I use the hand sanitizer a few times and shower when they leave. As soon as I even think a cold MIGHT be coming on I take a zinc lozenge right away. Then just a few more (3) over the next couple of days. I take some gulps of honey and some vitamin C and I would take 2 selenium for one or 2 days, it's supposed to be one of those super supplements. I also get a flu shot every year and got a pneumonia shot a couple years after being diagnosed, then in 5 years I got the booster. my GP Doctor didn't even know you could get a booster. When I asked him he said "Nope, You only need that once and your done." He looked it up and gave me the booster.
You've gotta do some research on your meds. Some prescriptions can make it harder to breathe, if I look it up and read that it can do that I can ask for something else if (should say when) I'm having trouble breathing.
Oh yeah, Since there are so many germs on doors and counter tops, especially at places like Doctors Offices, I know they clean good but what do they miss and do they do it several times a day? What about the pen at the pharmacy or the gas pump Handle? Do yourself a favor, don't worry about it! Get yourself a few small bottles of hand sanitizer and a big one for home. Carry it with you everywhere you go. Problem solved. The only thing I haven't done is wear a mask. It probably wouldn't help anyway.
I've gotta say i have had 2 very minor head colds that were gone within 1-2 days when my wife's colds turned into bronchitis both times, and zero chest colds since 2001. I really believe that has helped the PF more than anything. I have heard from one person for sure I can remember saying her PF got worse after a bad lung infection. I have never had a chance to ask anyone else.
Don't know if this will help anyone. It's all just common sense things I've picked up over the past 15 years with PF. Sometimes you can overlook things, this is just food for thought. They say that it's just blind luck, some people just die sooner than others. I'm sure that's true for some people or, maybe they didn't get diagnosed before the disease had progressed. I just have to wonder how many Doctors or even Patients think about the simple stuff? Maybe you haven't had it that long and haven't had a chance to gather your thoughts yet. It is a shock to hear a Doctor say you are terminally ill and average life expectancy is 3 years. I would be tickled pink to get the last laugh on this terrible disease. I pray God will bless us and there will be a cure, besides a lung transplant with it's own terrible problems. We would be better off with cancer, at least there are a lot of people working hard on that and some people get cured. as far as I know nobody has ever been cured of PF. The only guarantee is, it will progress. I have no intention of making it easy on the disease. Doctors look you in the eye and say they can't help. We have to try and help ourselves. there are online companies that have sold herbs for many years and are good quality. Much cheaper than the Big Health Food Stores. I would mention where i get mine but I don't want to cloud the issue. if you would like to know message me.
3 Comments
Hi Barry. Thank you for your response. I found it helpful and uplifting. Would be great to hear an update from you. Wishing you well Lizzy
Thanks Barry, your story is really helpful and calming, Im 58 now, they told me first that I have COPD and now they did a CT scan and appears scaring but they didn’t gave a final diagnose in the results, all the rest of my body is normal except for that scaring in the low part of both lobes and one in the right side, the wierd thing is that I had never been exposed to anything or even smoked , I cant understand what is the true here and what is happening to me.
Thanks Barry, your story is really helpful and calming, Im 58 now, they told me first that I have COPD and now they did a CT scan and appears scaring but they didn’t gave a final diagnose in the results, all the rest of my body is normal except for that scaring in the low part of both lobes and one in the right side, the wierd thing is that I had never been exposed to anything or even smoked , I cant understand what is the true here and what is happening to me.
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.
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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