6 Less Common Symptoms of Idiopathic Pulmonary Fibrosis

According to the National Heart, Lung and Blood Institute, here are several less common symptoms and signs of idiopathic pulmonary fibrosis that you might develop over time.

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1. Rapid and shallow breathing.

Here are some simple facts about idiopathic pulmonary fibrosis.

27 comments

  1. J. Turbes-Shaw says:

    “Clubbing” is not clearly exemplified by showing a person with chubby hands…isn’t it a disproportionate enlargement of the finger/toe tips compared to the overall slenderness of the hands and feet?

    • Jose Rentas says:

      I was diagnosed with PF on Nov 2014 when I went to the hospital with pneumonia. At present I am stable avoiding situations and exposure to harsh chemicals.I use oxygen when I feel funny or I mean short of breath. I am 83 yrs young. Take it easy and trust God.

      • Tim Bossie says:

        We are so very glad to hear that you are stable right now Jose. Keep doing what you’re doing and keep that positive faith.

        • Cher E says:

          Thank you, Tim. Very kind of you. I just don’t understand how this disease hit my brothers and mother in their 40s and 50s and then takes my uncle at 76. They must find a cure or a treatment that actually helps extend life. It’s a very strange and horrific disease, and we need to educate others about it. Most people that I talk to still have never heard of it.

  2. I don’t agree with any of this article!!!!!My Father had no symptom’s until a cold came on.He just felt sick ,not hard of breathing,just got what seemed like a cold!!!!!He died from IPF within less than 2years!Yes the finger clubbing didn’t even happen until he was less then a year away from DEATH!He had a lung Biopsy that diagnosed IPF.He got even sicker after the biopsy.This was 2007 he passed.Not much has changed ,but a new med that MAY help slow down the progression.Either way I will be realistic.My father suffered to breath,he felt like he was drownding!Even a lung transplant is known to only give you 5years tops.I’m so mad at this Disease!!!!!!!Kill’s as many people a year as Breast Cancer!!!!!!Untill your loved one gasping for air,you just won’t understand!!!!!I’m angry,and I have every right to be.

    • Brenda says:

      I agree, I have had several family members pass away with this terrible disease. 4 had pneumonia first and then were diagnosed. One witnessed shortness of breath first , then passed away within a week.

    • Danielle says:

      I had never heard of PF when my father was diagnosed and passed away from it less than a week later in October 2015. He had multiple bouts with pneumonia. Had difficulty breathing. He was tired often. But he worked hard. He never lost his appetite much. He also had diabetes, so some of his issues we attributes to that. He was actually overweight but when ever he lost weight they blamed it on blood sugar. Whenever he was tired they blamed it on working too hard or a cold or pneumonia. By the time PF was diagnosed, he was down to 10% lung function in one lung and 0% in the other and intebated. He had 0% chance against this disease and the doctors never looked for it or diagnosed it until the very end. If it is so common that people die from it as often as breast cancer, why don’t doctors looks for it and test for it? My dad really suffered and we will never really know how much. I am very angry as well.

      • Aleatha says:

        I wish my family would understand my struggle. I have pulmonary fibrosis. On oxygen for the last 2 years. I’m depressed all the time and struggle daily. I’m a 56 years old female.

        • Greg says:

          Aleatha I was diagnosed with pf pulmonary Hypertension congestive heart failure. Scleroderma in May of 2016. Was recommended for double lung transplant. Through process discovered prostate cancer. No transplant now. Treating scleroderma with kemo to slow attack on lungs. Getting family to understand and absorb all this in a short period of time is hard to do. I’m still working on it myself. Do on a daily/hourly basis. I just the Lord when I see another day and keep the faith. I’m 57yrs old. My world has been turned upside down. I smile n approach with humor.

        • Jackie says:

          Aleatha, I am 52, and was my mom’s primary caregiver. She had IPF for over 10 years, 7 or 8 of which she was able to lead a relatively active life. Because she had it for so long, we were constantly answering questions about the disease to our family and close friends – and it was 1) hard for them to understand e.g. they had never heard of it and/or “assumed” it was caused by smoking, which it is not to the best of my knowledge (plus my mom didn’t smoke), which elicits less empathy/sympathy perhaps? It’s subtle; 2) because she seemed ok for so long, it was hard for others to understand why she had to all of a sudden stop to rest after just a few steps; 3) my mom didn’t lose weight as she also had congestive heart failure and was retaining a lot of water (like 15 lbs) and had to take a strong diuretic. Point being, she didn’t look emaciated or sick really. When she had a stroke a few months before passing in Jan., she was 79 – always with a sense of humor until nearly the end. Yes, she was also depressed, but we tried so hard to watch ever comedy special, regardless of how vulgar, all the way to The Golden Girls (Hulu or Netflix), which is tamer but still pretty funny. It became a goal to laugh every day. Eventually, something really weird happened … she felt so much better. I’m not trying to simplify what you’re going thru by saying “laughter is the best medicine” when I truly understand how depression doesn’t really allow one to garner enjoyment from just saying “laugh more,” but, I can tell you this — it definitely can’t hurt, and will lighten your mood so much. I am so sorry you’re going through this. I am looking now to find out if I have symptoms since my mom and uncle had it. Oh, one thing that helped my mom a lot was the really small portable oxygen “devices” that go up to 6 liters. It was small, discreet and allowed her to more easily get around. Of course, insurance didn’t cover the cost and they are a bit pricey – but they did allow her to pay over times/installments. Just FYI. It was called InogenOne, I believe.

    • Cher E says:

      Shelly, yes! I’ve lost my mother, 2 brothers and an uncle to this disease, and I think they all started with colds, too. It is a HORRIBLE disease and even though as many die of this one per year as breast cancer, breast cancer gets the big money for research.

      • Tim Bossie says:

        We are truly sorry for your loss Cher. PF is a terrible disease that devastates many families. We hope that there is more and more awareness so that there can be more research to help stop this disease.

    • Eduardo Casiano says:

      I was misdiagnosed 4 different times ipf copd and allergies, ild,pnuemonia and allergies.I work in an area where there’re lot of pollutants and air borne contaminants. And my Dr said as long as I stay there I we be getting worst quicker. But he didn’t tell me where he lived so I could rest easy and not have any bills to pay.

  3. Vijaya Srinivasan says:

    I am a bilateral lung transplant survivor. Got my bilateral
    lUng transplant in October 17th,2 012 . So far I am doing ok. God is great. Very greatfull to the donor and Transplant team who gave me a Second life. I am nearing the 5 year soon. If My Karma is not finished my lease will be extended to live longer. I am very fortunate to have wonderful family and friends. I am doing my best to make a difference in the world with whatever help I can contribute those who need. My gratitude and thanks to everyone I am associated with. ” be happy Don’t Worry”.

  4. Sam Tara says:

    2008 diagnosed with asbestosis
    1 year fighting with worker’s compensation my lawyers and judges agreed and awarded me coverage.
    2015 spent 37 days in two different Hosiptal new diagnosis pulmonary fibrosis, to old for lung transplant, too risky for biopsy
    Life spand between 18 to 24 months plus.
    November 24 of 2016 it has been one year..
    Lung capacity 43 % on o2 24/7
    No cure a , waiting game .
    Worked with Asbestos since 1977 through 1983, for the NYC SCHOOL SYSTEMS AS FIREMAN ON COAL BOILERS AND OTHER MAINTENANCE WORK CONTAINING ASBESTOS.
    You wake up one morning gasping for air.
    Terrible disease.
    Wish all prayers and a cure soon

    • Bruce Annear says:

      I also am diagnosed with PF due to Asbestos. I was in Engineering in the US Navy. My lung Capacity is about 38%, maybe less because I quit getting tested. It seemed pointless. I am currently at year 7 since my diagnosis, so I have beaten the odds, so far. Best Wishes!

  5. Jorge Garreton says:

    Hi,,I agree 100% with all the 6 symtomps explained here..and all the others..I was diagnosed in 2010 and in sept 28 2013 had my lung trasplant which saved my life and gave me great survival hopes ..I´m now in my 4th year and live a normal life at 67 years old …I had lost 20 kilos the day of the surgery..no wonder because couldn´t almost move..
    Great site and luck to all of you
    Jorge Garreton (santiago, Chile)

  6. Lillie Herold says:

    Three People who worked in the same building and room were diagnosed with IPF.Two Has since passed, three years post diagnosed. I was diagnosed in 2004 after a lung biopsy, and have very few problems, except on exertion like house cleaning, walking on elevated surfaces or walking more than two city blocks. With respect to the building where the three of us worked, I recall A sign being posted in each area of the building, notifying employees about small amounts of Asbestos had been found through out the building. Because three people were diagoned, two of which never smoked, Could This Be Classified As A Cluster?

  7. Bob Bradley says:

    I am 72 and was diagnosed with IPF in October 2016 by my pulmonologist. I had been misdiagnosed for 10 years or so by family doctors. I now have about 50 percent lung capacity and am using oxygen when doing any physical activity outside my home, including walking. This is a cruel disease and there are times when I start coughing and gasping for air. I don’t think I want a lung transplant (if I’d even qualify) so I just sit … and wait … and pray for a cure. Yes, it is all very, very sad.

    • Linda W says:

      What about the two drugs that came to market in 2014? Esbriet is the one I will be starting very soon. My diagnosis is recent but lung bases showed damage in cat scan in 2012. A scan of bones in 2016 drew attention to ILD. Just got 02 less than a moth ago. Please try to find a dr. to order at least get Brochure to learn about this.

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