4 Idiopathic Pulmonary Fibrosis Patients Share Their Stories

The British Lung Foundation has a series of videos featuring idiopathic pulmonary fibrosis (IPF) patients sharing their stories. The patients come from all walks of life and their journeys are all very different.

In this video, Joyce explains that it took four years before she received her idiopathic pulmonary fibrosis diagnosis. By the time she was diagnosed, the disease had progressed so much that she needed a double lung transplant. Joyce talks about her life before the lung transplant and how much it has changed for the better since the procedure.

MORE: Five questions about pulmonary fibrosis you should ask your doctor

Marilyn says her first symptoms of idiopathic pulmonary fibrosis were a constant cold and persistent cough. At first the doctor diagnosed depression, but hospital tests and X-rays showed that it was fibrosis. Following her diagnosis, Marilyn’s symptoms worsened quickly and she needed an around-the-clock supply of oxygen. However, oxygen therapy has improved her life and given her back some of her independence.

Seventy-five-year-old John first started developing symptoms of IPF in 2012 when he found it difficult to walk a short distance without getting breathless. His doctors first prescribed an inhaler but when it didn’t work, they sent John for a series of tests, including a lung X-ray which showed scarring on his lungs. Since being on oxygen therapy and other medications, John says he leads a fairly normal life, although he can no longer attend soccer matches.

Colin says the first sign that something was amiss with his health was breathlessness, which he’d experience when doing anything strenuous, along with pain in his chest. Doctors suspected angina, but tests revealed he had idiopathic pulmonary fibrosis. Colin manages his IPF with lifestyle changes and forward planning. So far he feels great but he takes it one day at a time.

MORE: Read about the five main factors for living with pulmonary fibrosis

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.

2 comments

  1. geoff says:

    i am a post op IPF patient ; most important thought is never give up hope;
    one must go through a battery of tests approx. 70 hrs in hospital to receive an ok to be accepted into program; however a committee of dr’s votes on acceptance for transplant; the older you are above 70 the less chance for acceptance at some locations; furthermore one is given a score ; this score is developed by UNOS ; the sicker one becomes the higher the score and the higher your move up for the call for an organ; they do not want to give limited lungs to someone not that sick until necessary ; they are approx. 1400-1500 per year; the needs are in the 10’s of thousands for 3 diseases; if you fail the test you can try another hospital; one must also exercise daily to stay healthy; I could walk ten feet when I left the hospital; now I walk daily 1-1.5 miles and lift weights to stay healthy; I eat a healthy diet also; 5 year anniversary celebrated last fall with no hospitals stays ; I work at it daily to maintain a good health but it takes commitment

  2. Ellen Hays says:

    Seven years ago, at 77 years old, I walked 1-2 miles nearly every day. I had been diagnosed with AFib a. Couple years prior, so when I began to feel “unwell” on a morning walk, I figured that was the cause, and immediately walked home and rested, and it passed. Shortly after this episode, I began coughing, which progressed to the point it was “bugging” both my husband and me. My GP took a chest X-ray in his office, noticed something at the bottom of my lungs, which didn’t look like pneumonia, arranged for an MRI, and the diagnosis was confirmed as IPF by a pulmonoligist. But by this time, a time span of about 3 months, fibrosis must have been galloping along because I felt awful and unable to function normally at all. Instead of the fast walker I’d always been, I trailed my husband, which he found disconcerting. When I was finally seen by a pulmonologist, he put me on high dose steroid, and I immediately felt like my old self — ready to wash Windows, clean entire house, etc. I investigated IPF on the Internet, saw that life expectancy was 3-4 years post diagnosis, and just never thought about it anymore. Our son-in-law saw an article in the Wall Street Journal reported IPF, sent it to me, and I learned I was far from the only one living with this disease. And began watching closely as little tidbits of info began to pop up. The WSJ posted another article some months later about the drug Esbriet (perfenedine). My doctor had told me the drug appeared to be showing promising results in Europe but not approved by FDA in USA. the next WSJ article, FDA approved in November 2014. I immediately took it upon myself to find out if I could get it thru my insurance, but it was so newly approved it took several months to get it thru the specialty pharmacy of my insurance’s approved dispenser. I’ve worked thru the side effects, which were very easily handled, and believe it must be working because I’m now seven years post diagnosis, 84 years old, still drive (always hooked up to my portable concentrator) and probably don’t walk any slower than any other octogenarian. I’ve accepted that I will always need supplemental oxygen so try not to entangle my feet in the hose as I walk throughout the house. We are fortunate to live at sea level, and that probably helps.

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