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How did you find you had fibrosis?
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I had a dry cough for several years and tried a variety of meds for asthma, none of which cured the cough. I was referred to a pulmonologist. A CT showed the fibrosis, and pulmonary function tests showed that I had lost a considerable amount of lung capacity due to the fibrosis. I also had a lung biopsy, which identified an autoimmune lung disease that was causing progressive fibrosis before it was diagnosed. I think it’s very important to push for a diagnosis as soon as possible because your lungs may be being damaged before the cause is identified.
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I am 73 and have been diagnosed with IPF and am on Ofev, twice a day for about a year now. Started getting very breathless while walking but thought it was normal. Previous x-rays did show something and the doctors treated me for infection. I am also taking Remeron at night to treat anxiety. It has been three years since I was diagnosed. Recently started losing appetite with occasional diarrhea. Scans show about 50% fibrosis. Oxygen is 95% – 98% at rest but drops to below 80% when I am walking. Had two ct-scans and a ct-pet scan to rule out cancer. CT scans show progression over a year. BTW, I participated in the ENV-101 trials last year.
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In early July, I ended up catching Covid. And not just Covid, it was super, mega Covid from H*ll. I ended up being off work for over a month. When I returned to work, it was at first 2 hours, then 3 hours antil I worked my way up to 6 hours. I was still struggling with breathing, but everybody said it was just long Covid. I was still seeing my regular doctor. One day at work, I just couldn’t do it. I went home after an hour.
Finally, my regular doc sent me to a pulmonologist who immediately mandated me to go to the ER. He sent paperwork to the ER, instructing them to admit me. I had done an oxygen test at the pulmonologist’s and my oxygen level was in the low 60’s. His instructions were to see him and a cardiologist. Cardiologist said things were fine. Pulmonologist had multiple breathing tests and thought it was just long Covid. Finally, I had a MRI, and after the results, it was discovered that I had pulmonary fibrosis, all on December 24, 2022. Merry Christmas, indeed. At least I knew that it wasn’t just me just struggling.
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I was diagnosed Aug. 13th of last year. I went to 2 different doctors and told me I had pneumonia. Then they called me and told me I did not have it. So I had an episode of not being able to breathe. I went to the emergency room and they did a CT with contrast and found Progressive Pulmonary Fiibrosis. The doctor told me then there was nothing they could do and sent me to my pulmonologist. No better and have not started on OFEV
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My father died almost 20 years ago from pulmonary fibrosis. At that time there were no treatments, but he told the whole family that there may be a genetic component. When my identifical twin sister was diagnosed with IPF in 2017, I got tested. Luckily my twin told me that in the early, asymptomatic stages IPF often doesn’t show up on an xray. That was true for me, but I pushed to get a CT scan and was told something was going on in my lungs which couldn’t be definitively diagnosed as IPF, but which Brigham and Womens Hospital in Boston would check every year along with pulmonary function tests. In 2022 I received the IPF diagnosis and went on OFEV (reduced to 100 2x a day due to high blood pressure side effects). Since 2022 I have experienced very little pulmonary decline. One of the leading experts in IPF told me that as many as 30% of first degree relatives of someone with IPF will have it/get it. Early diagnosis is key, and I’m hoping anyone with a familial connection will start getting tested at age 50. It makes a huge difference to your ability to manage the condition through exercise and diet (as well as your mood) if you start taking action before you’re out of breath. Can’t say enough good things about the Brigham, particularly Dr. Goldberg (my pulmonologist) and Dr. Hunninghake who does excellent research in this area.
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