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.

  • 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.

MORE: Eight tips for protecting your lungs from unhealthy air.

181 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

          • Tonya says:

            My doctor informed me that lung damage from PF is different from the damage caused by smoking. While smoking does not help the condition it is usually caused by exposure to harmful chemicals. I was exposed to chemicals at a plant where I was employed and that is how they said I got it.

          • Anne Smith says:

            I’m 51 and I have been told that I have got fibrosis and scarring and hardening in the lungs caused by polly myotitis a muscle disease. I just wanted to know more about it.

          • Mari Salzman says:

            I was diagnosed with PF 4 years ago. Mine was caused by an immune disease called Scleroderma. I also have Lupus and 7 other immune diseases. I’ve never smoked. Once you have PF, you can also get COPD, as I have. I was diagnosed at 48 years old. My PF is rapidly progressive. I get hospitalized on average 8 times a year. This year I’ve gotten pneumonia 4 times so far. It all depends on the person.

          • Sue Howitt says:

            Tonya, in the same boat as you, I was exposed to zinc chloride smoke daily for 25 years, also have emphysema

        • 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 ..

          • Gentry says:

            Jehovah God can make us strong with promises such as those at Revelation 21:3,4 My aunt was just rediagnosed with this disease(she has dementia and was diagnosed 10 years ago but didn’t tell anyone). Now she is in the very late stages.

          • penny upchurch says:

            i read the scriptures. i read all that are put up and revelation 21; 3and4 is our only hope. i have this disorder and my dr. never told me a thing last year when i was diagnosed except, at least its not copd. another dr was helping at another visit and told me the expected life span, then i started getting serious and doing research on ipf. i came to this web site and i am learning a lot. every thing has been beneficial.just wanted all to know, and say thank you.

        • Kathy L says:

          Hi Judy, I was just diagnosed a month ago with idiopathic pulmonary fibrosis. They are going to start me on OFEV . I was just wondering how you are doing if maybe we can stay in touch? Thanks for listening Kathy

          • Mary Burgess says:

            Hi my name is Mary Burgess from Tn, I’m 62yrs old. I was diagnosed with PF in January of 2017. I’m testing for transplant now, but it doesn’t look promising.in Mark 10:27 GOD says “With GOD All things are possible”. I received a call yesterday from Pulmonologist saying PF is progressing quickly now. I’m ready to go but hate leaving my Family. GOD has promised I’ll see them again one day.

            GOD bless you
            Mary B

          • Dixie Rose says:

            Hi Kathy, I’ve been on OFEV for a yr. now, it has side effects like diareha and upset stomach, but I believe my cough is better I was diagnose when I was 65 I’m 72 now so I’m beting the odds I take Serrapetase and N.A.C. supplements also try to eat with the oFev as it makes a big difference !! Stay in touch if I can help Dixie

          • Galen says:

            Hi kathi. I was just diagnosed with IPF in January 2018. Started OFEv last month. Hanging in but haven’t told my adult children yet. Planning to in May when they come to visit. It’s been hard keeping this to myself and wife. I don’t want gold around me treating me like a dead man.

          • Michael says:

            My father is in the final stages and now entering Hospice. The biggest surprise was how quickly he declined in the fifth year. he was playing tennis four years ago.
            Get on a lung transplant list early and keep in touch with the transplant team.

          • Michele says:

            Husband has been on Ofev for 2years. After being on esbriet. A terrible medication w horrible side affects. Been stable now for a while. Have also been giving him 2tab organic cider vinegar in water every day. Seems to help with the cough.

          • Chuck Morris says:

            Good Luck on OFEV…!! I was on it for over a year….. Lost 55 lbs. and spent a year on the toilet….!! Really screwed up my digestive track …. I’ve been off OFEV for over a month, now, and I feel great … Hope the OFEV works for you. My system couldn’t tolerate the medication. For me: It’s a Quality of life issue.

          • Betty Lintern says:

            Hello Kathy, you are lucky you have some Ofev – I was diagnosed with ipf in April 2016 and still trying to get some help – I know nothing will cure my condition but I feel all alone and am being left to die – my GP knows”basically nothing ” about IPF – God bless all sufferers of this insidious disease –

        • Steve says:

          I am 63 now. I was diagnosed in October 2009. I exercise three times a week for 2 houra at a gym and do a yoga class also. I have been taking Ofev for about 2 or 3 years and it definitely helps. Although, my regular Pft tests keep getting worse, I still have just shortness of breath when I climb stairs or do cardio exorcises. So there is hope. I know its coming. I am ready for the Transplant, going to Mass, and enjoying family and life in the meantime.

          • Ron McWhirt says:

            I’m 54 and have been having lung problems for years. Have RA and fibromyalgia and Sjourgrens. About 4yrs ago a Dr noticed scaring on my lungs but didn’t explain it to me. A year ago I started night O2 now I’m O2 full time. Will be starting Esbriet so hoping I see good results. I have 7 grandkids I want to see grow up.

          • Frankie Bostick says:

            How fast is your PFT decreasing? My Husbands is going down by 5 every 6 months. I am so worried.

        • Annie says:

          Prescription for Nutritional Healing by Phyllis Balch and Prescription for Natural Cures by James Balch and an N.D. My lungs are helped by Shaklee Vita-E, for scar tissue, along with Vita-C. And Clear Lungs by RidgeCrest Labs on regular basis. Cause it worked against bronchial asthma, bronchitis, sinusitis, colds, and helped my heart too. Any herbs for lungs help. I avoid sugars and flour products. Use a lot “God’s Creative Power for Healing” by Charles Capps.

          • Michele says:

            Has the herbs help with the cough. Also do you know if has helped improve breathing function tests? Very interested in herbal Med for Ipf

        • Bob Snyder says:

          Judy i am Bob,59 pulmanary fibrosis came 2 yrs ago after dermatomyositis started 6 years ago. Short of breath now. I obey the command in luke 12:4 and I don’t fear death. Jesus has it all figured out. Tired if suffering and look forward to going home.

        • Munki M. says:

          You are right, Judy. Faith in God through Jesus Christ is our only hope. I’m praying for God’s grace for you.

        • Marsha says:

          Thank you for your words of encouragement, especially your obvious confidence in the Lord. I am suffering deeply with stage four sarcoidosis which has now progressed to pulmonary fibrosis. I’ve been hospitalized 29 times in three years, mostly with flare ups and pneumonia. For me, the chronic widespread pain takes my breath away more than the disease itself. At times the pain is so severe I find it difficult to pray. I had my third broncostomy four days a go. (…checking for cancer cells, I think). I should get my biopsy results this week. Any advise that has enabled you to navigate through this dangerous, painful and mysterious disease is welcome. May God embrace you with his gentle comfort, wisdom, and relief. Sincerely, Marsha. [email protected]

        • Ina Enslin says:

          Amen. My hubby was diagnose today, only 30% lung function. He is all fine just battle with step. He is just 60yrs oor. But i choose life for him. Deut 30. The devil wants to come and steal the breath that God breathed into him. I bind you Satan in the name of Jesus.

        • john says:

          Keep your eyes on Jesus wonderful sister
          My mum has this condition past 5yrs and will pray for her and you.
          Bless you always and forever amen X

      • 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.

      • karen says:

        Good afternoon,I am worried my lung condition which is “mild apico pulmonary fibrosis”I don’t really understand what is all about I need a deep explanation about this and is there any cure since it’s mild or supplement so that it didn’t get worst.In this case am I allowed to travel abroad?Is this a type of lung cancer?I also did research that hemp seed oil can cure Pulmonary fibrosis,is this true?I am looking forward for your advice.Thank you and good day.

      • Zayah Amundson says:

        They can live longer through up a lung transplant. If insurance can’t make that it only uses medicine to help slow it down which is between 3-5 years.

    • 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.

      • lala says:

        Hi Lin,
        My Father age 73 was diagnosed IPF May 2018. Doctor said he has 3yrs. However, My Father Oxygen is 93-96. He is can’t breathe. He is stationary, gets exhausted, can’t maintain his appediate, he inhale and exhale very quickly, he has dry mouth during night sleep, have a slight dry cough. He walks 10 feet he is out of breath. Panting rapidly.. I don’t know what stage he is in? I was told he could pass on in 2 weeks or go the whole 3 yrs. Im confussed due the fact he is oxygen is 93.

        • Anthony Momsen says:

          I know what Your father is going through as I am going through the same thing. I am 72. My oxygen would be in the mid to high 90’s but I could only walk a few feet and would have to stop. I am still in the dark somewhat about with that much O2 why did I feel like I was about to die. I am on steroids which help the energy level and I am able to get around. I am calling my doctor tomorrow as I am having a reaction to the steroids. The skin on my arms and hands are totally dried out and cracking dead skin is constantly falling of.

        • Danielle says:

          Oxygen is carried by the blood. The lungs can be functioning at 50%(inflating/deflating half of what they are supposed to do) but still taking in enough oxygen to circulate in the blood. You can be getting plenty of oxygen and still find it hard to breathe when your lungs can’t take in enough air.

        • Zelda says:

          My husband is the same. IPF short breath but high oxygen. Something to do with the number of high functioning blood cells carrying oxygen. Example-70% cells operate at high oxygen level but 30% are low. Ask your doctor.

        • Karen George says:

          I have Sjogrens and have a very dry mouth. One thing that helps at night is a mouth tray made like a teeth whitening tray, but is not formed around the teeth but allowed to cover the gums. I put a mouth gel in the tray at night. It allows the gel to disperse slowly and keeps the tissue moist. A dentist who specializes in dry mouth told me not to constantly take sips of water at night as it washes any saliva you do have down your throat.

      • penny upchurch says:

        i went for a second opinion because my oxygen dropped to 80 and has done it several times during a coughing episode. where i was awake the whole time i was coughing all night. now my doctor, the original[ not the second opinion doctor]wants to say its so mild theres no worries and no danger. i stopped all treatment due to side effects and financial issues. i am still coughing really bad and short of breath while i am awake and active in day. this gets bad at night and i cant sleep because of it. the dr saies my weight is some of it. there are numbness in hands. swelling of legs and
        feet and blacking of the toes. i am concerned he is wrong.i will have
        second opinion results next week.are
        they a mild, need no treatment, pulmonary fibrosis? i was diagnosed last year.
        last month with his assistant it was a different story. it was 5 yrs. expectancy. i do not know what to think now.

      • Kathleen says:

        My mother had pulmonary fibrosis and was given a 5 year life expectancy at age 65. She passed away 5 years to the month of her diagnosis. She spent 4 good years after diagnosis, but went down hill in the last year.

      • Leah says:

        My sweet beautiful momma lost her fight with pulmonary lung fibros christmas 2017 the last 3 mths of her life were hard on us all very depressing and heartbreaking, watching her slowly die and couldnt do shit about,but she lived more than 5 years almost 7 i believe,.my heart goes out to everyone with this disease ans for those who have to take care of a loved one. She was 66 when god took her from me
        MY grandma died when she was 61 and my uncle died at 56 December 2017 never knew he had it and my uncle who will soon be 61 has it as well but going for a lung transplant, this disease has taken alot of my loved ones.. i.am 45 i go to my lung doc tomorrow for my test reaults im just being cautious
        God blesa every one

        • Veronica says:

          Lea, you mentioned this disease took a lot of your loved ones. Where do you live? And do you think your family got it from pollutants or from their job?

          • Rebecca says:

            Veronica, I truly believe this disease is caused by pollutants in a persons work environment. My mom worked in an Factory making medal braces for 22 years. She was a non smoker. No attorney would ever pick up the case because they say it’s too difficult to prove where the disease came from but in my opinion there was no other explanation for the disease. She lived about 5.5 years from diganosis

          • Mari Salzman says:

            Mine was caused by an immune disease called Scleroderma. It is attacking my organs 1 by 1

      • Faisal says:

        How long ago your mom was diagnosed. I’m really sad for my dad he just digonoed and doc said it’s very early stage.

    • Susan barnett says:

      My friend was 46 she found out 7 weeks before she died that she has this ,we are totally gutted we thought she was going into hospital with a chest infection

    • Jeff Forshee says:

      oh yes it can be true, my wife was less than a year. Do not waist time, as soon as indications arise, get into a program for future lung transplant. Insurance companies will delay in any way they can, but be persistent. Get into an institution because just the evaluations can take too long. Do not fool around with PF!

    • Nancy Fraley says:

      Very true.my husband found out 15 years ago and still living.He has at times hard time breathing .He takes no medication and is doing good.

      • conor says:

        Hi Nancy

        Do you mind telling me how old your husband is now, 15 years seems to be really good going. My wife is 38 and it looks like she has it. her mum, aunt and uncle all had it so it looks like it runs in the family.

    • Jill says:

      I have pulmonary fibrosis from having severe chronic bronchitis and bronchial asthma since age 6. In later years I contacted 3 types of tuberculosis that lasted 3 years. I seem to have gone in a remission state. I don’t trust doctors because I was told TB would never return but it flared up on and off for 3 years. I have been a swimmer most of my life but it’s getting harder to breathe especially in the winter. I have quite a few nodules and my left lung looks like broken glass on the bottom lobe. My right lung is completely scarred. I do believe that swimming and staying as active as possible has prolonged my life, however I still will always be a TB carrier. I honestly feel now that I am 62 that my life expectancy is only about 3 years. The fibrosis will only get worse as time goes on. I am not worried about it but I won’t use oxygen until I need it. I saw my father die from using oxygen and nebulizers when he didn’t need them. Having a lung disease almost all my life has been difficult especially when I was a kid. Cold air on the lungs is hard. I still try to enjoy my life. I wish the best for all of you. I just think the doctors are terrible when it comes to these problems.

  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

          • Michael Donoghue says:

            Hello Betty
            Regretfully I can confirm that neither Australia nor New Zealand will prescribe Nintedanib nor Pirfenidone. Unless you have suitable private health insurance, the cost of buying them yourself is prohibitive (around AUD50,000 pa I believe).
            The oft repeated advice is to:
            Stop smoking yourself and others in your house; avoid polluted air (I found central Melbourne and Sydney to be poor, but Canberra, Adelaide and Wellington OK); eat healthily; watch you weight (neither high nor too low); try to get on a Pulmonary Rehabilitation course (depends on where you live); exercise regularly (walking, Tai Chi, Yoga all good); ensure you have up to date ‘flu and pneumonia jabs and practice good breathing techniques. I would add my own advice – first do not hesitate to see your doctor if and when you develop cold, cough or flu symptoms. Second make the most of your life, with friends, relatives and interests.
            Best wishes

          • Laurence Griffiths says:

            I am 63 years old and was diagnosed with IPF in late September 2017. Last week (early March 2018), the approval came through to provide me with nintedanib under the Australian PBS.

          • Laurence Griffiths says:

            Forgot to mention that, when I obtained my first month’s prescription, I paid $38.50 (Australian) which is typical under the PBS. However, on the label was “(Full Cost $3387.12)”.

            So that equates to $40,645.44 full cost per annum.

  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!

    • Dawn pprter says:

      What uip with fibrosis I was diagnosed with it almost a year ago. I am 52 years old and not doing well I have e two sons and separated. They told me I may have two years. I am on a lot of meds they are trying g to hel. I am so worried about my children not so much me

  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

  13. Farooq says:

    Hi. I’m in early 40’s and not fit and have v low stamina. I have recently had pulmonary fibrosis due to past radiation treatment. Right lung is 50 % scarred and left lung is fine. I also have a old nasal breathing problem due to deviated septum. But I breath ok having short shallow breaths. I also have hypo thyroidism and take harmone replacement therapy. For few years in past I had a severe mucus problem which had to be extracted manually but thanks to God, it was cured.I have good lifestyle and excellent diet, but want to remove acids and mucus making foods from diet as they R not good for health and longevity and cause other health problems. These chemicals in drugs R rubbish as they have side effects. I recommend herbal or fruit extract treatment. IF u know of any good medication for this lung disease that doesn’t have side effects, pls let me know. Regards

  14. Martha says:

    Noticed problems in 2011, lived in apt with stairs would get dizzy taking laundry up and down the stairs. Had mri’s and heart doctors, nothing found. Weight was 200 lbs, just figured I was out of shape. 2016 noticed coughing when doing lifting and bending over and when I layed down at night, by end of year it’s was very noticeable. Finally when to watch a parade walked carrying a metal chair and had to stop to rest 5 times every 30 steps which really scared me and when back to doctor. Found out I had diabetes and asthma, nearly passed in doctors office trying to complete a breathing test. Had chest x-rays. Doctor then said I have diabetes andI IPF. Referred to lung center in Dallas where it was determined I has 59% lung function 95%. I have been extremely blessed with help of insurance, drug assistance to be able to take esbriet 2300 mg a day. It’s been a year. A year ago I has 3000 to 4000 steps a day, now it’s a good day if I do 2000. I cough 200-250 times a day. I do quarter of what I was able to last year. With long periods of rest because of the coughing. The coughing goes crazy in the restroom even with my inhaler with I use all day. I start coughing trying to us the restroom, gagging and trying to throw up at the same time. I can’t get excited and talk to much without having to stop. I stay up at night so my husband can sleep without me laying cough. Life is changing I have throw up bags everywhere. I try not to go place that are big like Walmart. I am terrific of stairs and bleachers, can’t do those anymore. But I am still here and fighting every day.

  15. Tara says:

    I was just diagnosed with lung fibrosis last week. I also have COPD and sarcoidosis with calcification in my lungs. The only way the fibrosis was caught was that I caught the flu (yes, I had my flu shot) and kept going into emergency because I felt like I was breathing through a coffee stir stick and my heart was between 122-200. I was sent to a lung specialist who told me “you’re in trouble”. I also have severe reflux and my acid is going into my lungs when I lie down (now sleeping propped up and increased my medication). He told me I have fibrosis and my lungs are only at a 56% capacity. I am not in the best shape so I’m doing a huge change as both my parents have heart problems but I’m the only one with lung issues. I am 45 with a 16 year old and am not willing to leave her this soon so I’m hoping my lifestyle change will prolong my life and I’m willing to fight it all the way. I wish all of you the very best with your fight.

    • Gwen says:

      Hi Tara, I also have
      Sarcoidosis. Pulmonary
      Fibrosis & just dx: with Sarcoidosis in my
      esophagus, which is very rare. I’m just
      so tired, ready to give up

    • Stephanie Coots says:

      Thankyou and God bless you ! Prayers for you, also. Enjoy your family. I know this is fricken hard to handle,. My situation is the same,. Boy it just happened like that for Me and I tell you,.I Am in shock..i DONT think THAT will change. No matter what I enjoy my children and grandson 1 yr old,. But yes I am scared,.scared of the unknown and how this will be played out, how I will go,.and will it hurt, willing know. Ya know!!?:( i am in my 3rd year after being diagnosed with 50% from living in my apt. 11 yr,s Having mold. Respitory failure, ..invasive aspergillus Phemonia. I feel everything that is happening too. That’s wierd. I DONT WANT to be right about what my body is feeling; declining. Fact is fact no matter where your mind will heart and soul are. Being positive is nice; but acceptance is what is helping me also thank You for listening and sharing

  16. Clara says:

    I am 73 years old I was diagnosed but Plumbing pulmonary hypertension 2 years and 3 months ago. I have chronic scoring on my lung severe acid reflux I have had acid reflux for many many years no medication has helped me I call I choked on my food and I throw up sometimes I throw up blood the only thing is that I have for this is oxygen as my lung capacity is 25% I am allergic to all the medications that they could possibly give me to help me and they also told me I had bacteria in my right lung and nodules throughout both my lungs. I’m scheduled for another scan next month I really don’t want to know what is new as I’m already suffering from anxiety depression losing weight not being able to eat and not sleeping very well at all pain all over my body. It looks like when I do something that I get so excited it last 4 days for me to recover and then when I do feel like well I can do something else and then go right back to that same stage I don’t think I will be one to live any longer than 3 years as I was never a healthy person to begin with. I have always kept care of myself never smoked never drank alcohol was on a strict diet because my colon bothered me I had here till bowel so I feel this is so unfair to me. I don’t want to die but I know that I can’t deal with this disease and I have read so much information on other people and how they are going through this and I’m ashamed to say that I guess I’ve been feeling sorry for myself because I can read how strong other people have been through this wanting to fight and here I am wanting to give up. I have had heart problems since I’m in my early thirties and been on medication for my heart all these years I am not healthy at all. I also have nodules in my thyroid gland I had surgery for thyroid problems when I was 27 years old but they only removed the left lobe and now the right one would need to come out and I’m not a surgical candidate at this time or anytime because I cannot be put to sleep. I think I got the bacteria in my right long after having two teeth extracted because they broke from swallowing a lot of the nasty stuff and blood because I didn’t have the bacteria before it did not turn out to be Mac thank God at that time at least I don’t know what I’m facing when I take my next scan. It’s been comforting to read what others have to say about this DF it seems to be a mystery disease to me. I stay at home I don’t want to even try to go out anymore and I would never think I’m going to a restaurant to eat because I’ve seen myself throw up 3 times in my food while trying to eat and I would be very embarrassing if I were to have that kind of attack in a restaurant. my story seems to be never ending I spend so much of my time Googling to find out information about this PF. I know that I have to stop doing this and enjoy what time I have left with my family but it’s hard to get it out of my mind it seems to be there all the time. thank you for taking the time to read my story

  17. Clara Gamberella says:

    I made many mistakes all this was being typed I was diagnosed with pulmonary fibrosis 2 years and 3 months ago I have chronic scarring and only 30% lung capacity left I apologize for my sloppy message

    • Sally plourde says:

      I’ve just been diagnosed and I feel very badly for you. Keep on trying and feel what you feel, but keep on trying. Don’t give up!

  18. Mary Burgess says:

    Hi,I also was diagnosed with PF Jan/2017. I’m currently going through evaluation testing at Vanderbilt University Hospital in Nashville Tennessee for a right lung transplant. They said my right lung has shrunk down to 50% smaller than my left lung. There is times I feel sorry for myself and don’t want to talk to anyone, but then I remember what the Bible says in Mark 10:27, “With GOD All Things Are Possible”. With this disease I have found out so much through support groups, my prayer is that GOD will give each and everyone on here peace and comfort in their personel struggle with horrible disease. My daily prayer is that I live each and everyday as though it is my last day with my Family and Friends. If I live to go through with my lung transplant or even if I don’t, I’m a WINNER either way.My PFT’s are getting lower and lower, I’m on 02 24/7, my levels are 3-lpm on sitting & resting, but when up to even just go to bathroom i have to be on 5-lpm, stairs and hills are my worst enemy. Does anyone else have problems with your 02 levels changing so suddenly. Your input would be appreciated.

    GOD Bless You

    Mary B.

  19. Stephanie says:

    My grandpa was diagnosed with this disease less than a year ago. Relying more and more on oxygen tanks over the months that followed, he ended up passing 3 days ago.

      • Greg Burge says:

        Esbriet is very costly however there are organizations that assist with donations. Your pulmonary doctor will have the names and contact information. I have found that this drug has lived up to what was told. I have stayed about the same with just a slight increase in oxygen. As I stated before, I will continue to go as fast and as long as possible until I can’t. With God’s help each of can achieve and show others that we are strong and vibrant. Don’t give up, keep pushing and look to God and your family. Blessings, Greg Burge

    • Greg Burge says:

      Very Sorry for your loss Stephanie. As we age our bodies have less to work with to fight. I know your Grandpa did his very best and now is at rest. We all one day will meet God face to face, with Jesus’ assurance we will all meet again. God Bless you and your Family.

    • sharon says:

      So sorry to here that my brother 46 we’re going through it had is test in Manchester hospital. Said Friday he carnt go on transplant waiting list is bones are crumbling. Life just not fair he’s only got 36 breathing of the lung left just wish it was me the pain we are all going through is unbearable sharon

    • Veronica says:

      I’m so sorry for your loss Stephanie. what was your grandpa’s cause of passing? Did he have a heart attack? Interested because my grandpa has it too. He was diagnosed 6 years ago. Recently went on oxygen and it has helped him so much. He is not taking OFEV or esbriet. Sometimes I feel like he is very depressed or wanting to give up. Very similar to what you all are feeling on here. I always say try to have hope and think positively. I am interested, what does the end look like for people that have PF? Is it a fast or slow decline and painful? Or do you just pass in your sleep? I don’t want my grandpa to suffer more than he already is.

      • Anne Mitchell says:

        My husband was diagnosed with IPF about 1 1/2 years ago although he has probably had this for some years before the diagnosis was made. Despite seeing his doctor(s) regularly, no one diagnosed this. He went on continuous O2 @ 4 liters in June of 2017 but it steadily increased to 10 liters. I watched a moderately steady progression, each week brought new challenges. He went from being able to walk to the bathroom, then he would walk half way and have to sit and rest, to using a Jazzy scooter to get from the living room to the bathroom. He couldn’t shower, I did it for him. The progression became very rapid in July and he became house bound, we weren’t even able to get to doctor’s appointment. He was hospitalized on Aug 17 and his doctor suggested he consider Hospice. He came home on Aug 21 with Hospice and liquid O2, 16 Liters at rest. He never lost his sense of humor and only twice I detected he had slurred speech. He had tried Esbriet but it made him awful sick. He also took Metformin because he had read studies had been done that showed this slowed the progression even improved lungs in mice. He was not a diabetic. He died Monday, Sept 17, at home and thankfully I was with him. I had prayed for a miracle and I believe God granted it because my husband died peacefully, no struggle. He had been a heavy smoker for many years but he believed this was related to exposure to chemicals in his younger years. He was 73 years old. The episodes he suffered with extreme resp distress were terrible because he was suffocating. I am so grateful he death was peaceful.

    • lala says:

      I’m Sorry Stephanie for your lose.
      My Father (73) was diagnosed IPF May 2018. Doctor said he has 3yrs. However, My Father Oxygen is 93-96. He is can’t breathe. He is stationary, gets exhausted, can’t maintain his appediate, he inhale and exhale very quickly, he has dry mouth during night sleep, have a slight dry cough. He walks 10 feet he is out of breath. Panting rapidly.. I don’t know what stage he is in? I was told he could pass on in 2 weeks or go the whole 3 yrs. I’m confused due the fact he is oxygen is 93.

    • Allison L says:

      Im so sorry for your loss. I had a similar thing happen with my relative. It went super fast. Praying for you and your family Steph

    • Sheila says:

      So sorry, my Mother was diagnosed with Pulmonary Fibrosis in October 2017, she died July 5, 2018. This is a terrible disease, we thought we had more time. Did not know it was as bad as it was.

  20. Anne Pekoc says:

    My very active, otherwise healthy, father was just dx’d with IPF. He has been complaining to his Dr for 7 years of increasing breathing issues. Always being told he’s healthy as a horse and nothing to worry about. After his lung biopsy 2 weeks ago, he got this dx along with the info on the almost $100K drug. He plans to forego the drugs and live life to the fullest while he can. My thought: I think he has probably had IPF for 7 years. From what he has read, the long term life expectancy doesn’t really change with the medication, it just allows for a couple years of better breathing. He said the lung capacity at 72 months is about the same with or without the drug. Is this what you all understand?

  21. Gregory Burge says:

    I am 67 years old, retired U.S. Navy, retired Wichita Kansas Police Crime Scene Investigator, Contract Armed Security and Hospital Chaplain. Diagnosed December 2013, placed on ESBRIET 3×3 times a day. Progression has been minimal. I have gone from 2 ltrs. Now at 4 ltrs. I remain very active hauling around my bottle. Hunting, fishing, church and Worship Master of Derby Masonic Lodge #365 in Derby Kansas. God Bless

  22. Bruce says:

    My youngest brother (52) was diagnosed with COPD a couple of years ago… His overall health has declined rapidly in the last 6 months.. Dr’s are now telling him that COPD should not be progressing this rapidly… They are now saying that he may have IPF.. Pulse O2 levels were in the high 60’s on Monday. He was a smoker but quit years ago… there is a family history of GERD. Myself and another brother have had the Nissen Fundoplication surgery… Lastly my brother worked for years in a warehouse freezer for a large distribution company… Could constant exposure to refrigerants be a contributing factor?

    • Evertt Eudy says:

      I am 70 yrs old, just diagnosed with pf 02 levels drop into the upper 60s in just a few mins. If doing very much. I worked for over 40 yrs. In the Refrigeration Industry, wondering if thats what caused my pf disease. I am on 3 ltrs. of 02 while sitting, but 4 while walking. Inhalers only at this point

  23. Wilhelmina G Mercado says:

    In Sept 2017 i was having difficulty in breathing and chronic cough.i was a smoker.my xray showed a suspicious nodule so i had a ctscan.impression was apical pleural thickening,pulmobary nodule right middle lobe and pulmonary fibrosis both lung bases.in december 2017 i had a heart attack and diagnosed with heart failure.are these conditions related to each other?

    • Vance says:

      Heart issues absolutely related to IPF. I play handball and exercise and am starting to have heart issues, including
      valve regurgitation, and very
      high dilations, especially of right atrium which feed lungs.
      AFIB issues also exacerbated
      along with blood pooling which
      require blood thinner Eliquis.

  24. Billy says:

    I attended my doctor last Tuesday and he phoned me this morning to say I have lung fibrosis. I this the same as pulminary fibrosis.

  25. james clark says:

    i was diagnosed with copd three years ago 2015 now after numerous scans xrays cuoghing up blood i had a broncosapy and found out i have ipf when you have a lung or breathing problem instead of all the other treatments why not first a broncoscapy

  26. Kathy L says:

    I’m 60 years old. I was diagnosed with PAH a year ago. The pressures is back normal. But I was still having breathing problems March of this year lung biopsy showed IPF. I’m on o2 247 Ofev cialis tadalfil and opsumit. I’m gaining so much weight and legs/feet stay swollen. A year ago I was at curves and almost collapsed. And I also got married March last year and down hill I went. No coughing no mucus. Thanks for listing Kathy

  27. Sonia says:

    Hi,
    I would like to know if any of you that have been diagnosed had to have a biopsy first to confirm before receiving medication? If so was the biopsy a relatively easy procedure?

    Thank you
    Sonia

  28. Mary Burgess says:

    Yes, I had VATS biopsy and it took me 3mos to completely heal from it, but they did 3 different sections of my lung. Hurts pretty much every time you breathe or move.

    GOD bless you
    Mary B

  29. Elmary says:

    I have been on Vesicare for several years and only recently my Doctor took me off the medication as it causes lung fibrosis. I was shattered to find out that a specialist can prescribe medication knowing wat this causes lung fibrosis. I just pray and trust that I will not develop lung fibrosis.

      • Veronica says:

        “If God doesn’t want you to, you won’t.”

        FYI God has nothing to do with PF. God Doesn’t give it to you if he wants, don’t blame God. It’s Life. Pray to God for the strength to keep going, spend time with family and friends, this is your time to really appreciate the small things and special moments. My grandfather has PF and all he does is watch tv all day, doesn’t want us to disturb him (I think he feels like giving up or no hope left for life). His lung function is at 50%. Please tell me, with this condition should you have an active lifestyle? My grandfather is a couch potato and we tell him it’s not healthy to sit in front of the tv all day.

  30. Theresa W says:

    My Stepfather has been diagnosed with Ipf. I am super stressed about this as he has chosen not to have a lung transplant, and is no longer eligible for the drugs….as the Dr said it wouldn’t help him at this point. He is on Oxygen, and is always short of breath. Realistically, how long should I expect him to live, if he refuses a transplant? Please pray for him. Thanks

    • Kristi says:

      Determining how long someone lives depends on age, health, lifestyle and faith. I’ve been through hell but I always TRY to stay positive and never lost faith in the Lord throughout this horrific journey. I was diagnosed with PF about 9 years ago, I was 41. I’ve got Lupus and unfortunately I contracted the swine flu (H1N1) during the 2009 pandemic. I was in a coma for 5 months while during that time I spent about 3 week on a rotoprone bed (a rotating oxygen chamber that I’ve still only seen on the internet). I was dealing with kidney failure from the lupus as well. I’ve been on continuous oxygen ever since. The flu caused significant damage to my lungs. I’ve never smoked either. My doc and I discussed a transplant briefly but after the year long coma and rehab stint, I was on dialysis for five years while I waited for a kidney. I’ve been through so much, I’ve decided to deal with the oxygen until I’m tired of it and then revisit the idea of a lung at a later date. I’m glad I stumbled upon this thread, it helps to hear other stories. My prayers go out to all fighting with not only PF but any other chronic illness.

  31. Susie Price says:

    Yes,you are asleep during open biopsies…Don’t worry! Recovery is About 4 weeks….stay in hospital was four days….wasn’t bad at all. Good luck and keep keep looking up. God Bless

  32. James says:

    Believers and non-believers

    Almost 12 yrs ago now I was diagnosed with pulmonary fibrosis. I had an accident and while I was in the hospital they addressed an issue with my lungs. A biopsy was sent to the Mayo Clinic and they sent the results. My wife was told I’d only last 5 yrs Max.
    There are so many variables that have an affect on your final outcome that there really isn’t any way of knowing how long you’ll last. I have chosen not to take a drug called Esbiet. The drug cost $96,000 per yr. First, my cost came to $1200 a yr. They go by a percentage of your gross and it comes from the manufacturer ONLY. I elected not to take it because of the side effects, one being upper respiratory infection. Sound a little counter productive?

    But now let’s get back to Believing. I was involved in an accident and as a result, I saw the after life, twice! There aren’t words on this earth to describe the serenity I felt. I could talk for hours and never come close to even begin making you understand where I was. A beauty beyond words. I came back via the paddles, but you don’t want to leave there. Unfortunately I wasn’t gone long enough to meet Our Savior, but I was headed that way.

    I feel sorry for people that are sick, but even sorrier for people that don’t believe in God and the afterlife, both are in existence! Whether or not you believe me is up to you. Just do me a favor, don’t stand next to me in line on judgement day. I have enough things of my own to answer for.
    Listen to what I am saying, it’s never too late to ask forgiveness!!!! Do I want to die, no, I have a family I’d like to spend time with. Am I afraid, not in the least. Take care of yourself as best you can and remember, the drug manufacturers use us terminally ill for experimentation and make you pay for it besides.

    When God wants you, you’ll be the first to know and all the drugs in THIS world won’t keep you from the NEXT one.
    Death is not a final episode for you, it’s just a transformation from one life to another. Behave and be ready.

  33. Helene F says:

    Found out I had IPF by accident had a chest x-ray to rule out pneumonia because I did not want to take antibiotics if I did not have to (that was my biggest concerned and did not think I had a serious lung problem) which showed interstitial lung disease – went to my primary care physician who did oxygen blood levels before and after walking – both were normal chest sounds at that time were normal again – everything seemed normal she told me to have another chest x-ray which she said would probably be OK as I had been ill when I had the first one – waited one month to make sure the lungs were cleared up however showed the same as the first – My doctor was shocked because I had absolutely no symptoms – was very lucky to get into a major medical center the very next day after I got the 2nd x-ray results – went there my pulmonary function tests were normal as well as the 6 minute walk – my new pulmonary physician was thrilled with that. She sent me for HRCT which again basically showed what the Xrays showed -she also did a whole battery of blood tests which so far all came back as normal except for one panel for myositis which she said some times can give a false positive so they will test that again – this test takes about 2 weeks – in the meantime she said I also had a hernia which showed on the scan which can push up into the lungs this should be addressed too with surgery – she then said I will most likely have to have a lung biopsy and bronscopy (sp?) as well –
    So I went from feeling completely normal and healthy to now having to face surgery and a very serious lung disease for which I have no physical symptoms at this time – This whole thing has totally shocked me beyond belief – but I guess I should feel lucky to have found out early before any symptoms have come up – I am extremely active exercise 4 days a week walk 5 to 8 miles every day – never ever short of breath and very active. However I am now extremely anxious about the surgery, lung biopsy and bronscopy and knowing I will have to have repeat HR CT scanning as well – also since all this happened I am not sleeping well – not sure what will happen next when they find out what is causing this – most likely the idiopathic pulmonary fibrosis – so needless to say I am very worried which I know will not help anything – I am hoping for the best but – cannot stop the worrying then I think I could have probably if not for the x-ray done by chance I could be walking around with this for a long time (maybe) before there were symptoms
    any thoughts on this any one else feel as I feel – the not knowing is the worst – I tend to over react and worry about everything

    • Rose says:

      Helene: I also found my IPF by accident. I had a routine chest xray for a physical in May 2013. My primary doc never called me anything was wrong. I saw my pulmonary doc for my sleep apnea in October that year, he saw the xray, and the report, and showed it to me. He asked ‘did you know you have this’? I was shocked. He did pulmonary function tests only at that time and they showed my lung function was down to 70%. Then he said see you in 3-6 months. He didn’t want to do anything else. I decided to go to the IPF Clinic at UCLA to see what they said. I paid out of pocket. They were awesome!! While most people don’t do well with this disease, there are people who do well for many years. They looked over everything I had, gave me a 6 min walk test. They made recommendations for my doc. So I went back to my doc, and because UCLA made the recommendations, he went ahead and did all the blood tests to rule out an immune disease. I finally got my CT of the chest done, but have come to find out he did not do a HRCT.

      Anyway, I’m trying to get things together here to go back to UCLA. Including the actual copies of the CT, etc. I want to enter one of their studies as my disease has been stable for 5 years. I have had NO progression of symptoms, and NO progression of the disease. I’m not on any meds, oxygen, or breathing treatments. My shortness of breath varies (see above post to ‘Mary’). UCLA has a support group, it meets once a month, but I have not been as it is a 2 hour drive for me.

      Don’t panic! You sound like you are in good shape! I don’t know how old you are, I am 66. Please keep in touch here and let us know how your tests are progressing and how your feeling!

      • Helene F says:

        Hi Rose,
        Thank you for responding – I don’t have the official diagnosis yet – but so far all blood tests came back OK except for one panel for myositis – which they will redo at another lab because they have gotten false positives – but X-rays and HRCT kind of indicate the idiopathic version. So far my blood oxygen level is normal passed the 6 minute walk test with flying colors – pulmonary function so far is normal – but I am still worried – I just turned 70 years old but I walk minimum of 5 to 8 miles every day and exercise 4 days a week – never ever feel short of breath – but the thought of testing and retesting to see how I am doing scares me – I guess I should calm down.
        You sound like you are doing well now for 5 years. I asked my physician about the 3 to 5 year life expectancy and she said that is not really true and people are doing very well now especially on these 2 new drugs. I have read other places where people are doing well over 10 and 15 years so hopefully we both will be in that group. Having never been ill ever finding this out by accident has freaked me out. HRCT scan showed a hiatal hernia – which I was told needs to be repaired. I am going to Northwestern Memorial Hospital in Chicago which is very highly ranked for this sort of thing so I am lucky to be there but still scared of having an illness – since I always thought of myself as extremely healthy – I guess you never know – hopefully new drugs and techniques will come down the pike as well.
        It was nice hearing from you. Thank you for replying to my rambling post.
        Helene

  34. Hi also learned by a fluke I heard of when my lungs collapsed while undergoing shoulder surgery. A scan and biopsy confirmed it. I also lupes of the brain, hypertension,scelerosis of the spine, fibromyalgia,type 2 diabetes and gerd. I was diagnosed in 2014. The first 3 years felt good but started to feel more sick and short of breath with chest pains. Constant infections that had me hospitalized more often. I am at peace not stressing. Basically I take life a day at a time. My faith has kept me strong and I do not fear the unknown for God holds my future in His hands not man. Death is just another end of one journey and beginning of greater things to come…

    • Helene F says:

      Dear Dulecia, you sound like you have a very good attitude- being at peace not stressing and taking one day at a time – seems like you have a lot of other health issues as well – but your good faith in God and attitude are wonderful. Please keep in touch.
      Helene F

  35. Rose says:

    Mary, just saw your comment about the elevation. I don’t know the answer. Neither did my doctor. I live at 4000 feet and I feel the difference. My sat is normal at sea level 95-97 (where my doc is), and is lower up here 91-94 at rest. When I’m at home and having to do anything physical my sat drops more at the higher elevation. I also get more short of breath. I can do physical activity better at sea level. My IPF has been stable for just over 5 years. I’m not on any oxygen, meds, or breathing treatments. I’m trying to gather info to go for another visit at the IPF Clinic at UCLA in the next month or so. I’d like to find out from them the questions about the altitude, and also if I should move to sea level. (I’d like to move and downsize, hubbie doesn’t).

    • Kathleen Honeycutt says:

      Rose, My husband has had PF and Sarcoidosis……he was diagnosed a little over 5 years ago. He has not been able to tolerate any medications, sever side effects and hospitalization were the result. His Oxygen level is now at 4. Your question concerning altitude is a good one. My husband cannot fly, even with using portable oxygen. He has much more difficult breathing at elevations over 2500′ We live at about 1,000′ and when we visit the Oregon Coast, he finds breathing much easier. Keep in mind this is while is he also on oxygen 24/7. His lung function is not quite 30% of normal. Only walks about 5-10′ and then must pause to get his breath. Most of the time uses an electric scooter. He is 78 years old. From the time he was 12 he worked with his father in construction. Was exposed to cement dust, sawdust, fiberglass, abestos, etc. Never smoker. This was before using a mask was encouraged. His father died of Pulmonary Fibrosis as well and was not a smoker. They both also lived for years in smoggy Los Angeles, before air pollution standards were adopted. Yes, a change in elevation may be of help to you. Best way to find out is visit a lower elevation and see how you do. Best Wishes, Kathleen

  36. Helene F says:

    Hi Rose,
    Forgot to add in my original response to you that I am so glad you doing well – not being on any meds -that is great – Are you still working? I am retired – but extremely active in all other areas.
    Please keep in touch –
    Helene

  37. Mari Salzman says:

    Hi Everyone,

    I am 50 years old and was diagnosed with IPF in 2015. In 2013, I was diagnosed with Lupus, Scleroderma, autoimmune hepatitis and a few other immune diseases. Since 2015, I have been diagnosed with Rheumatoid Arthritis also. My last PFT was 50/35, so they want to say I have COPD also…but it is pretty common to get COPD from ILD or IPF. I am just about to start Esbriet and would like to know if anyone has any experience with it. Also, I see a few people talking about getting on a transplant list…doesn’t a doctor have to do this? One last question, has anyone experienced gasping for breath almost to the point of passing out but O2 levels stay around 96-97%?

  38. Richard Thornton says:

    Dec 2009 Diagnosed with IPF. 2018 Lung Cap 47% not on any medication.
    Have lost 21 Lbs over the last year and a half. 206-185. 5ft 9
    excersize 30-45 minutes a day. Cough is consistant in the mornings
    and bedtime.Drink De-cafe tea with raw honey in it. Helps cough and digestion. Have xrays 2 times a year and my breathing test once a year.
    Oxygen 94-97. Steps or incline walking takes my breath away. Blood pressure is great 135/80 jumps into 140’s with excersize.
    I will be 81 In October. Thank you Jesus..

    • Helene F says:

      Dear Richard,
      Thank you for your information – you have had IPF for 9 years and it seems like you are doing fine. Are you currently on any medication for it? I do not really have any symptoms yet but found out by accident when I had a chest ray which led me to ILD Center to be evaluated. I am very anxious about this whole ordeal as I have never been sick before. I just turned 70 this year but I am very active – exercising 4 days a week and walking 5 plus miles every single day. Can you give me some more insight as to your daily regimen and any meds you may be taking – Were you offered the new anti-fibrotic drugs that I have heard about Esbriet and Ofev (not sure of spelling). Thanks any info will be greatly appreciated.

      Helene F

  39. RON GUERTIN says:

    Ron G. Was just diagnosed with PF last week. 81 YRS. OLD. Function test shows TLV at 60%, which seemed to really concern the doctor.Took all the blood tests for auto immune diseases and get results next week. Still doing everything I always have, but breathing is a little labored at times. Don’t know if I should take the drugs or not–Would appreciate any thoughts out there as to how helpful they’ve been vs side effects and cost. Also, any natural cures makes sense? serrapeptase? Does it help to really hit the workout routine hard? I’m told my lungs are on the small side. Thank you all for listening and God Bless!

  40. Allison L says:

    Hi Everyone!
    Im 27 and my name is Allison. I do not myself have PF, but I work with many patients who do. I am in a program studying to be an RCP (respiratory care practitioner) and I was wondering if any of you would have any tips or comments about how your RT’s you’ve seen can better accommodate you. I ask because I want to be the best care provider I can be. My heart breaks for those who suffer. Please know that I’ll be praying for you all as well. <3

    • Tom says:

      Hi Allison,

      My beloved father passed away on July 27th, 2018 after being diagnosed with IPF in April of this year. He was 83. He was hospitalized for low sodium, was doing well until he developed bacterial pneumonia. Unfortunately this compromised his lungs even more. I truly feel my dad would still be with us if the pulmonologist and pcp educated us on how important it is to get the pneumonia 13 shot. They never mentioned it to us. Please educate your patients about getting pneumonia vaccination. You may be able to save a life. Sounds like you will be a great respiratory therapist. Best wishes!

      Tom

  41. lesley scheerle says:

    I live in Manitoba Canada, in the country, so it’s not feasible to drive 3 hours a day to get to a pulmonary rehab. program. I was diagnosed with IPF in October 2017. My Pulmonologist told me it was progressive and then handed me a little booklet on the disease. It reiterated the 3-5 year survival myth. This spring, after another HRCT scan, he said it might not be IPF but he wouldn’t give a final diagnosis till after my next HRCT in Sept. So now what? It’s so hard to wait not knowing what’s going on. I’ve been on prednisone since I saw him this spring and I shake like a leaf! I’m aware this can happen with steroids and hope it will go away when they’re finished. Like many of you, my pulse ox. goes to 80 or below just walking but rebounds quickly to the mid 90’s when sitting. I bought a treadmill and can go for 15min. x 3 daily, with O2 stats. of 80-84 but don’t know if it’s wise to exercise with that much oxygen depletion to the muscles – as I now constantly feel like I’m dragging my butt. Any wisdom out there re: this? Many thanks to all who contribute. We all need support.

  42. Elivia Nelson says:

    My Grandma has IPF, and I don’t trust the doctors working with her. They diagnosed her with Bronchitis and COPD, and even treated her with those diseases. However, they later discovered she had scar tissue in her lungs. She’s not qualified for a lung transplant either. The doctors want to put her into a coma, and I just want to know if that’s safe.

  43. Moses samson says:

    Hello everyone, I am 36 years old and was diagnosed with ILD in January 2018. I was on steroids till last month with many side effects.. my situation is getting worse even with little activity. Cough is not going. Last week my doctor told me that its second stage.. and scarring on the lungs has not reduced much. Did anyone get this IPF in young age? How are they dealing with this? Appreciate your advices

  44. Nan Martin says:

    Hi, I am Nan from Ontario Canada, 52 years old. I was diagnosed with radiation induced pulmonary fibrosis 4 months ago. I had treatment for breast cancer Oct 2017. All I have been told is will be monitored, yearly CT scan, no specialist until symptoms are bad. I may not get bad till I am old. My father had PF after radiation for colon cancer. At first it was treatment induced later changed to idiopathic. He died a few years later with Mets to brain and IPF, respiratory failure. I worry about my future. My doctor says exercise lots so I am doing that BUT I also have intercostal neuralgia from treatment so can’t get breathing rate up. Rather frustrating. I do have burning and tightness and sometimes pain in right lung with deeper breathing, occasional cough. Just wish I new more. Which is causing lung pain.

  45. Priscilla Shingleton says:

    My husband of 58 years was diagnosed last month with IPF. Just had 90th birthday August 4. Symptoms were probably there for past two years but all excused to stopping gym visits due to injured back, worsening atherosclerosis, diabetes complications… numerous doctor visits during those two years but none detected something amiss when listening to heart and lungs with stethoscope until doctor at VA was suspicious, ordered chest xray and then high resolution CT scan which showed developing IPF. His oxygen is usually 98% and pulmonary function measured 57% which pulmonologist said was moderate. Pulmo is not encouraged to prescribe any of the meds because of severe side effects and high cost. I suspect age was another factor altho he did not indicate that. He had a dry cough for months (allergies, doc said), muscle pain/weakness (polymyalgia rheumatica, doc said; prescribed prednisone), fatigue/sleepiness (not compliant with CPAP) and now having night sweats which I’ve read is another side effect of the disease. Being evaluated tomorrow for pulmonary rehab program and definitely want to have more discussion with pulmo about some of the meds. 3-5 years? Would that be from two years ago when he started this change or from diagnosis last month. How often are xrays and scans done? A new journey.

  46. Patti Housley says:

    Hi my name is Patti and have had pulmonary fibrois for 4 years, now severe. I am noticing more shortness of breath especially when I lay down at night. I elevate my head bu still have a hard time. I cough a lot at night, some during the day but nights are the worst. I am 71 almost 72. I also have mixed connective disease and take cell cept and plaqunel. My pulmonary doctor told me 4 years ago life expect was 3-5 years, guess I am getting there. I worry about it alot.

    • Mari Salzman says:

      Patti Housley,
      I am 52 and have the same diagnosis 4 years ago. I was also diagnosed 6 years ago with Scleroderma, Lupus, RA and 4 other immune diseases….all considered mixed connective tissue disease. The Scleroderma is what caused my PF. I feel myself having a harder and harder time every day. One thing that helped me, especially at night was I got tested for sleep apnea and I use a bipap at night. I also practically sit up to sleep. The bipap has helped me sleep well and not cough as much at night. Just a thought.

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