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.

MORE: Four breathing mistakes you’re probably making

  • 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.
  • As the condition progresses, a person with pulmonary fibrosis is at risk of other health complications including heart attack or failure, stroke, pulmonary embolism, and other lung diseases and infections.
  • There is currently no cure for pulmonary fibrosis but treatments and therapies are improving all the time.
  • The average life expectancy of someone with pulmonary fibrosis is three to five years but if it’s caught early, treatment can help slow down the progression of the disease.
  • Pulmonary fibrosis patients will lose an average of between 150ml and 200ml of lung capacity each year as the disease progresses.
  • Lifestyle choices such as quitting smoking, eating well, maintaining a healthy weight and mild exercise can help with the symptoms of the disease, improving quality of life and extending life expectancy.
  • Prognosis will be worse for patients who also suffer from COPD or pulmonary hypertension.
  • The older a person is, the worse their prognosis generally is. Women usually have a better prognosis than men.
  • There are two medications used to treat pulmonary fibrosis that have been shown to reduce exacerbations and slow down the progression of the disease; Ofev and Esbriet can be used in mild to moderate cases of pulmonary fibrosis.
  • Some PF patients may be eligible for a lung transplant.  This will depend on their age, their overall health, and lifestyle choices.

MORE: Things to keep in mind when considering a lung transplant

Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.-

32 comments

    • Lea says:

      Judy Krasovec. All I can say is please don’t fight if you are recommended to collect disability. You have got enough on your plate to have to add earning an income to it.

      I’ll lift up a prayer for you.

  1. Amie says:

    I was diagnosed with pulmonary fibrosis last year, but no one is treating me so I am on the war path with my doctors, they say “it’s not that bad right now” well I want treated now so I can live longer, has anyone had stem cell treatments and if so how is it going?

    • Jim Warrick says:

      Amie, Duke University pulmonary chief said stem cell treatment offers some hope FOR THE FUTURE but not now. Right now it seems to attract scammers. As for not bad right now, if you have IPF you should get on Ofev or Esbrit as soon as you can get it, and as soon as you can, get into a pulmonary rehabilitation program as this is where you will get good knowledge on how to live with this disease. Looking back, I wish I had had this advice two years ago. I might not now be on oxygen around the clock and struggling to get enough oxygen even then. Ofev is expensive! But seek financial help from a foundation like HealthWell Foundation or OpenDoors. Hope this is helpful – based on experience.

      • Joyce Bennett says:

        OpenDoors were great, paid what ins would not, and offer support and education, 24/7. I tried Ofev, but the diarrhea was so bad that I couldn’t do it. Worth trying, it may help you.

    • Maureen Dow says:

      Amie, I am in a similar situation and cannot understand why we have to fight for treatment. I may be 70 with RA but I don’t wish to be written off just yet.Seeing my GP on Wednesday and going to ask to be referred to Pulmonary Fibrosis centre. Wish me luck! Maureen.

    • Kathy says:

      I wasn’t diagnosed until a year after had symptoms. I have been on Esbriet for one year & my physician said I should be “ecstatic”, as there is basically no change in the disease from a year ago. I am, but am losing more energy. My breathing tests are the same & I am greatfult the Esbriet is helping. I would check with another doctor, if they dont put you on something. My doctor felt it was important to get on something as soon as possible.

      • Jim W says:

        Richard, I would agree that early treatment would be good. As far as I know, that would be either OFEV or ESBRIET. I am in year five after diagnosis, started on OFEV at the beginning of year three. No side effects for me and I think it has extended my life some. At year four and three months I caught a cold and had to go on oxygen full time two months later. Avoid colds and the flu. As for stem cell, “Maybe some day but not yet.” Hope you have good insurance coverage as OVEF is expensive.

  2. Jose Rentas says:

    I was diagnosed on December 2014 during a Pneumonia episode. At present, I know to have decrased my lung capacity. I take oxygen terapies when I feel lacking breathing capacity or fatigue.
    I am 84 yrs and so far I am taking it easy.I have not seen a pulmonologist for around two years. I was prescribed an inhaler that affected my throat and did not use it.
    Now I was recommended breathing rehab. I will try. Also have asthma and CHF.

  3. Constance Mitchell says:

    I am 5 yrs into having ipf, given esprit 4 yrs ago could only take it for 2 days it caused sever stomach pains my total weight now is 70 lbs. 3 yrs ago I had fungus on the lungs 10 days heavily medicated. Now continuous coughing pale mucus, antibody was levofloxcin 500 mugs. Helps for a week only. I also have 3 fractures in back, hacking cough hurts taking hydrocod/10/325 .4xa day. I truely believe mine is just a waiting game. Wonderful husband & 5 daughters. I am 82 yrs old

    • Stan L'Hoste says:

      I too have IPF and loving family, don’t quite know how to deal with them on my illness??? I guess close out all finances and start deciding who gets what??? Everyone seems including my wife, a bit uncertain about talking and acknowledging it.

      • Stacy says:

        That is my exact situation I’m 43 and my family doesn’t wanna except it I have not been offered any treatment and I was diagnosed 2014

      • Cheryl Gmitra says:

        Stan do not give up. Your overall attitude is your best medicine. I am 71 years old and I’ve had it for almost 18 years.my Doctor says I’m a medical phenom with this. I went on an injection in 2001 for a year and a half. It was experimental to see if the progression would slow down. It did. Like you I have a wonderful family who I can talk too. I know it’s hard so you need to fight a little harder. It works. One day at a time. Sincerely, Cheryl Gmitra

    • Charlotte says:

      May I ask what type of fungus? I have fungus in my lungs and scared because the doctor is very payed back and not really doing anything.

  4. John Ritchey says:

    58 year old Army Veteran (27 years). Diagnosed with IPF nine years after retiring from the military. Eight years into my next career I was diagnosed with this horrific disease. My experience is similar to what you describe in the article. The big difference is the pace of progression in my lungs. Within one year since diagnosis, I went through all of the phases and I am now on the lung transplant list. Currently in ICU at Emory, where a highly motivated and talented transplant team is working hard to save a life.
    Identifying the disease is difficult. I maintained my Army physical fitness routine aggressively after I retired from the military. I was captain of my civilian company’s Army Ten Miler team for seven years. My runs kept slowing down and I had a dry cough. I thought I was just getting old. If we had identified the disease earlier and been prescribed the drugs which slow progression (Ofev/Esbriet), we might be in a different situation today.
    I hope we can get the visibility and education (for doctors and patients) required on this disease. We need to stop it before my son’s are at risk.
    I give to the Pulmonary Foundation now and plan to continue generous donations in the future in order to stop this terrible disease in it’s tracks!

    • Stan L'Hoste says:

      I am IPF also, 1.5 years since diagnosis, and I agree. Not enough public info, treatments are brutal and limited, more support groups to educate victims how to manage the change of life priorities!! Will email with you if able!!!

  5. Ron Cade says:

    Long story short. If you experience shortness of breath or weakness in legs, get to a pulmonary doctor. My IPF was diagnosed three years after I started having these two issues. That was because my family doctor and her PA didn’t send me to a pulmonary doctor. At that time I was not the pushy type of person. Two and a half years after a two day hospital stay with pneumonia, I discovered the person who wrote the report on my chest xray suggested I get a CT scan as did the report just prior to my seeing a pulmonary doctor. I read these reports after I was asked to bring any previous xrays to my first pulmanary appointment. It’s as if nobody read these reports. My doctor nor her PA had not read them. Doctor admitted she had not. To her credit, she was not my doctor when I was in hospital. That doctor had retired. I may have got lost in the shuffle, literally. But there is no excuse for not reading the second xray report. Be involved in looking at your records. Its like reading the reports on medicine before you do or do not take it. I’m in charge of that. I now take Esbriet. The only problem I have with it is maybe a reflux issue which I already had problems with. Fortunately I have excellent insurance. I ask: If Ofev is problematic, can’t you switch to Esbriet? Ask. Both are designed to slow the degrading PF. I chose Esbriet because I’m on a blood thinner and should not take Ofev because of it. I have been on oxygen 24/7 since my first pulmonary appt. Soon after I had lung biopsies. I’ve been dealing with this for five years at minimum but the diagnosis was only a year and a half ago. A guy a met in therapy is going on eight years and working to get lung transplants, both lungs. That’s about as short as I can say it. I’m being served at a research hospital, UT Southwestern, Dallas, TX. They are great. This is where I learned about Esbriet and Ofev. Cheers!

    • Stan L'Hoste says:

      Medical community is very ill equipped to identify this relatively unknown decease.. I went 5 yrs to Pulmonologist and was prescribed inhalers to deal with loss of breath, they didn’t have a clue. Finally got to the head of a hospital involved in research studies on IPF, lung biopsy and diagnosed 1.5 yrs ago. Ofev and Esbriet were too brutal, stroke and total incapacity.

    • Stacy says:

      I’m 43 and diagnosed 2014 I haven’t been offered any treTment but I do not have insurance and I guess I’m just screwed. It’s hard to accept my oxygen is never above 92 and gets into 70 and I have t been put on o oxygen. So I guess I am more worried about with lack of oxygen where are is damaged. I have read that lack of oxygen causes a lot of other issues. I would love to email with anyone Who could have any useful advice for me. At 43 years old it’s hard to except that I have no options. I know that not having insurance is my mistake but it still doesn’t make it better that no doctor has offered me oxygen or any type of therapy or medication. I feel for people with this disease And their families

      • Gene says:

        Stacy you should be on the phone with Open Doors They can help you with financial aid .
        I was diagnosed about 6 weeks ago with IPF. I’m currently on sidebar and Thank God I’ve had no side effects to date. The telephone number is1-866-673-6366.. call them and they will help. I’ve also started using APeX Oxygenated Water. Been using it a little over a week and I can tell a difference in breathing, energy and using oxygen much less. It’s not FDA approved and you’re probably not going to get much info from your doctor about it. Need to look into this as well. Check it out on the web

  6. Damian Neuberger says:

    In 1983 I decided to start jogging as I seemed to be coughing a lot (never smoked or did drugs) and seemed to be a little out of shape. I only jogged about 20 yards and I suddenly couldn’t breathe and I knew something was terribly wrong! I went to my PCP who did an CXR and sent me to the small clinics pulmonologist who recently completed his Fellowship at Iowa. After a few tests and finally a bronchoscopy, I was diagnosed with IPF in May of 1983 and told I had 3-5 years to live, no treatment, no cure, no lung transplants. I did quite well without O2 for 13 years, worked, changed jobs and moved family, etc. In January of 1996 I got a bad case of the flu. That triggered a downward spiral, on O2 by June, referred for a lung transplant evaluation in September, listed on my birthday in November, did rehab and required 15 lpm while walking. Received a bilateral lung transplant 11 months later October 19, 1997. Lung function still over 100% of expected. My wife says being married to me has been a real adventure for the past 53 years. Unfortunately I’ve lost way to many friends to this terrible disease and during this transplant journey.

  7. Gerald Delp says:

    I was diagnosed September 11 2016 with I p f I am 54 I was overweight as well went to pulmonary rehab learned a lot about my disease I’ve lost 50 pounds on esbriet fortunate I only get heartburn I am going through testing at temple Lung to get on transplant list 24 7 oxygen 8 liters to walk or excersise disease holding steady

  8. Delma [email protected] says:

    My husband has pulmonary fibrosis and is taking Ofev. He is in severe stage of this disease. He was in Vietnam combat infantry exposed to Agent Orange of which the VA denies this as being the cause. He has so many health issues on top of this disease. He was diaginosed about two years ago and some days his breathing gets really bad even with the oxygen. The doctor seems to think the Ofev may be slowing the disease down a little but I can tell his breathing is getting worse It scares me to see him like this knowing there’s nothing I can do. It’s so hard to face the unknown but I’m so thankful for each day.please keep us in your prayers.

  9. Mark McQuillan says:

    My Mother has been Diagnosed with Pulmanary Fibrosis…I am not sure of the name of the drug she has been taking.I will check that tomorrow on my visit to her.As Mom is the main care giver for my Father (dementia) it is getting difficult.I think the meds are causing drastic weight loss..Wondering if she stop the meds will she gain back some weight…The whole food thing drives her crazy..just not eating..We have them on a list for retirement home..but here in Toronto its tough..very expensive…I was told 1 year waiting list…any advice on stopping the meds?

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