12 Facts About Pulmonary Fibrosis Prognosis and Life Expectancy

Pulmonary fibrosis (PF) is a chronic and progressive lung disease where the air sac in the lungs (alveoli) becomes scarred and stiff making it difficult to breathe and get enough oxygen into the bloodstream. There are a lot of misconceptions when it comes to PF prognosis and life expectancy, so we’ve put together a list of important facts to know with help from Pulmonary Fibrosis MD, the Lung Institute, and healthline.com.

  • The overall prognosis of someone with pulmonary fibrosis will differ from person to person depending on their age, overall health, lifestyle choices and the severity of the disease when diagnosed.
  • There are four different stages of pulmonary fibrosis: mild, moderate, severe and very severe.
  • Pulmonary fibrosis patients are advised to undergo pulmonary rehabilitation where they will learn all about the disease, the treatments available, breathing techniques and be placed on an exercise program.

MORE: Seven reasons why pulmonary rehabilitation is important for PF patients.

39 comments

  1. John Shaw says:

    Too many pop ups, plus I don’t really beleive some of your facts, ie: death in 3-5 years, not true, thats an old myth.

    • Tim Bossie says:

      Hi John… these facts are those universal guidelines that are “accepted” by doctors and researchers. However, that does not mean that they are set in stone. Many people live much longer than 5 years. In many cases up to 15.

      • Judy Franklin says:

        I am 63, never had any health problems, never smoked and a little over weight. My husband has irritable bowel syndrome so we eat a lot of chicken, fish and vegetables.

        I was coughing over a year and had shortness of breath, and was being treated for asthma. My son told me I needed to see a Pulmonary Doctor. I went to him in Feb 2017 and was diagnosed in April after all the tests. I am taking Ofev and praying, trying to eat right and exercising.

        I will pray for you all. I am scared to because of the unknown,
        I have claimed Psalms 118:17 (read God’s word and have someone pray with you. This is our only hope.

        • Jeffrey Carter says:

          I have had IPF for 3 years… so far so good, no noticeable problems… I am on the Paleo diet, no starches, basically… bread, potatoes, rice, etc. That’s it so far… No medications.

        • Dave Nandalal says:

          HI Judy franklin I`ll pray with you.My wife has also been diagonosed with this phenomenon disease for a few years now and yes it`s a mystery how these things develop especially when the person has never smoked or consumed alcohol.This is a real battle but the best care in the world is the love and support of your family. Trust in god my dear

        • Josho says:

          .. “faith as a grain of mustard seed” .. the Lord will support you and look after you. That psalm is a great comfort and will give you something that will go through into eternity…. keep praying in faith ..

      • Chris Shott says:

        Tim, my team of Dr. At National Jewish Health tell me 3-5 years is from an old study that they no longer regard as valid.

    • Lin says:

      I wish it was. My dad died after 4 years fighting this. He did extremely well the first 3 years then went downhill the 4th. The suffering was horrible. That’s just average that’s all they’re saying.

  2. I have PF am being treated for autoimmune pf w/ micofenolate 1000mg. BID. Was turned down for lung trans. due to kidney problems that disappeared after I quit using ( Etodalac ) a pain med the VA had put me on. Have not been back w/ the Drs at Wash U. /Barnes in St. Louis since I got the clean bill. Don’t know if they will reconsider or not.I showed 80% lung function on stress testing –but took 6 liter of O2 after 2 min walking on level surface and they don’t know why. Have had broncoscopic exams and biopsies and all of their tests.

        • Betty lintern says:

          Hello Judy – I am a 74yo from AU – diagnosed in April 2016 – have clubbing on fingers and toes plus shortness of breath – specialist won’t give me any medication – not sure what’s available in Australia – pray for strength to cope – God will cure me if it’s his will – stay positive- will pray for you all

  3. Islam says:

    I have a lung fibrosis ( on lower lobules of the lung). Diagnosed in 2015. Taking mucinac 600 twice daily.
    Plz suggest the life style or any medicine which will improve my condition. I am 36 years old.

  4. Gary Ford says:

    Warmest regards to all the above and best wishes…I was diagnosed with IPF 30 Jul ’15 with 50% lung capacity…at that the time there were no meds that were accepted in Canada, not until Jan ’14, but due to government bureaucracy it took until Sep ’14 to actually get on Esbriet. Living with IPF is NOT fun as it slowly robs you of your health and you become more dependent on your family to help you do the basic of chores. I retired 2 years ago to spend more time with my family. I was placed on the lung transplant list at Toronto General Hospital Multi Organ Transplant clinic Jan ’17 and received a double lung transplant 14 Apr ’17…praise the Lord. I am almost back to 100% of what I was pre-surgically and each and every day I get a little stronger. There seems to be some major questions and I would be glad to relate to them through my experience as well…I highly recommend joining a blog that discusses PF, such as Canadian Living with Pulmonary Fibrosis has excellent articles and stories from patients..good luck to all and God bless.

  5. Jeffrey Carter says:

    Sorry, I replied above, I didn’t get to the bottom of this… I was diagnosed with IPF in 2015, …. I recommend the Paleo diet. Carbohydrates, starches, make acid, which may permeate the stomach wall and go directly into the blood stream… the body reacts as if a disease is attacking… Cut out the carbs and the acid reduces to manageable levels, apparently… It’s a bit expensive, but I lost weight and have not taken any medications for the past 3 years… Of course, there are other causes that have nothing to do with leaky gut, but this seems to have been a key problem… Still nervous about it though.

  6. Kathryn Seeds says:

    How can you help someone who has recently been diagnosed with PF and is 88 years old, besides moral support and prayers? What sort of outside help would make a difference? Obviously, cleaning help. I was surprised that Diet plays a part in treatment. I find that baffling. Any ideas would be helpful. My prayers to all effected by this disease. Thanks for your comments.

  7. Denver Fox says:

    VERY PERSONAL (and long – you probably want to skip this). Today I reached 78yo – living 18 years longer than my dad, and so far 18 years less than my mom! Snowing and freezing rain today. Highways a mess, multiple accidents and extrications. I will be spending the afternoon at National Jewish Hospital for a 2nd opinion (number one in pulmonary diseases in the US of A) after testing there yesterday and numerous tests the last few months to see if I can get a handle on my “Idiopathic Pulmonary Fibrosis,” “Pulmonary hypertension” and possible “Pulmonary Dendriform Ossification,” and some mild “Sleep Apnea” or so they claim. I have no symptoms of sleep apnea, except the one home sleep study.

    None of the above is good to have (well, actually, according to the literature, pretty devastating to have – predicting morbidity and mortality), and was only discovered by a fluke in that cataract surgery required an EKG, which was abnormal, and led to many other tests, leading to the diagnoses just listed. Most of my evaluation has been done at the University of Colorado Health Sciences Center (tied for number one in pulmonary in the USofA).

    I aced my “6 minute walking test” yesterday. I also completed spirometry and other breathing tests for about an hour. I will get those results today, when I meet with the number one specialist in the US of A.

    There is little to be done medically for these diagnoses. I am taking a newly developed pill to slow the progression ($8,000 per month, paid for by insurance and a foundation) that causes stomach and system problems, etc., but so far have done OK including a complete metabolic panel yesterday – everything normal. I am on night time oxygen, because a study showed low O2 at night.

    Yet, through all of this, I have had no symptoms in any way. I swim, bicycle, walk, do resistance training, stretch, etc., have no shortness of breath and without the EKG for the cataract surgery and subsequent studies, would not be writing this today.

    At National Jewish, which evaluates folks from all over the world, most folks were carrying or rolling oxygen tubes with canula attached to their noses. Is this me in a couple of years?

    So, my conundrum. How much attention do I pay to these conditions? How much do I let them interfere with my life? A good friend says to ignore everything and get on with living. Besides, there is not much I can do, anyway.

    Well, if you have read this far, congratulations. I just needed a time to write all of this out – mainly for myself. Responses not required, but are welcomed

    • Elaine Reid says:

      I’m exactly where you are. Diagnosed because my sister died with it three yrs ago. I don’t want to take medication because of the side effects. I work out every day, eat well, don’t smoke or do drugs, no weight problem but I do get colds more often. My life has been turned up side down as I’ve been told I’m dying. Aren’t we all.

    • Sydney says:

      Happy Hanukkah to you ma’am, and I say that you just keep on keeping on! Don’t let a label define you. You went for a cataract, you no longer have it!
      I’d treat it as systems call for treatment. Your attitude is great,
      and I say you take into account what the physicians tell you as far
      as staying strong, but it sounds like
      you’ve got that! God Bless!!
      Sydney

    • Deborah Katz says:

      Dear Denver Fox,

      I loved everything you wrote. It reflected your personality, your warmth, your spirit, resilience, intellect, curiosity, and pragmatic approach to life. I wish you well. Good luck with the best doctors in the U.S. of A.

  8. Fedex says:

    I´m 42 years old, Islam, have you tried anti-fibrotic meds, you´re so young, you must try. God bless you. I have IPF too since (officially) 2014/5. Sometimes everything going well, but… sometimes… just strange.

  9. Claire says:

    I know getting a IPF diagnosis is devastating, but I must tell you I was diagnosed six years ago and my tests results are showing slow progression but not life threatening. This of course can change at any time, but we need to remain hopeful and trust that the Lord is with us. If you have great Faith, there is no need to worry!

  10. Buena josho says:

    My husband was just diognosed with IPF. Having read the above comments was very helpful. Thank you for taking the time to share….prayers for all.

  11. Patrick Lucero says:

    I was diagnosed with IPF approx 2yrs ago and had been given OFEV to reduce the growth of the dead lung cells. I had extream diarrhea. So, the dosage was reduced to half, Still had diarrhea but not as frequent. No improvement, so discontinued the OFEV. Also, being treated for RA (Rumatoid Arthritis) and Siatic nerve. Don’t know how to cope with it all. It’s been difficult for my wife and family.

  12. muhammad suleiman says:

    I am suffering from a chronic lung disease I am unable to breath unless with the help of oxygen concentrator pls I want a advice on how to treat this disease and stop using the oxygen concentrator

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