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Tell me about your PF diagnosis
Tell me about your PF diagnosis. I often hear patients and caregivers talk about how long it took to get a proper diagnosis. I have also spoken with patients who were misdiagnosed with the wrong disease or condition. What year were you diagnosed, and how long did your diagnosis take? How was your diagnosis confirmed?
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7 Replies
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Hi Sam!
I was diagnosed with IPF in April 2022. It was actually found by accident; I went to an urgent care facility for what I thought was just another case of bronchitis; however, after a week with zero improvement, I saw the doctor who initially did an Xray and saw double pneumonia in both lungs. He also did a CT at the same time; the CT findings were honeycombing with advanced IPF.
Although mine was discovered without much fanfare, what really irritated me was I had gone two years prior to a cardiologist with a chief complaint of SOB. Having a family history of heart disease, I saw my cardio doc annually. I complained of SOB to her and to her credit, she performed every test necessary to rule out my heart. What she DIDN’T do, was follow that clean bill of heart health with, let’s refer you to a pulmonologist. Had she done that, it likely would have been caught 2 years prior to the actual diagnosis, where it was already discovered to be in an advanced condition.
Doctors have become so specialized that they can’t see the forest for the trees. I worked in the medical field for 20 years; cardiopulmonary go hand in hand, yet my cardiologist totally overlooked my SOB symptoms as not being cardiac related, therefore we were done! Obviously, I wasn’t, as I’m now a part of a community of lovely people all dealing with the same issues.
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Thanks for sharing that, Susan. My primary care doctor initially thought I had pneumonia and referred me to a pulmonologist in her practice group. She had never seen IPF in her 20+ years in medicine. Fortunately for me, she did get me on the right track to a diagnosis.
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I was diagnosed in November, 2015. I had had a chronic cough for about 5 years, which I attributed to allergies. Upon the urging of my husband, I mentioned this to my PCP. She sent me for XRays, which suggested I might have pneumonia. When the cough did not improve after an antibiotic, she sent me for a CT scan which showed scarring of my lungs. I was immediately referred to a pulmonologist who diagnosed me with IPF at my first visit! My pulmonologist ordered about 40 blood tests to rule out autoimmune diseases, as I had no risk factors for IPF. She also sent me for a barium swallow to rule out GERD. To my surprise, I was told I had TERRIBLE GERD, in spite of no heartburn or other symptoms, other than the cough. I subsequently saw a GI who diagnosed me with Silent Reflux and put me on Omeprazole. My pulmonologist believes the silent reflux is what caused the scarring in my lungs. I have had no progression of my disease and am not on any anti-fibrotic medications, just Omeprazole. I try to eat well & exercise regularly, and am hopeful I will remain stable until a medication is discovered that can reverse scarring.
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Sam, I inadvertently posted something under “Loving Memory”. Can you move it to a general posting for me? The subject is about “Umbilical cord/stem cell therapy”. I’m just not great at navigating these kinds of things. I appreciate all that you contribute and know that it takes a lot of your time. Thanks for all you do. Debra Lowder
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From my 1st appt for a persistent dry cough, having xrays done (ordered by a nurse practioner), diagnosed with pneumonia, given antibiotics, going back, having my PCP look at the xrays, know it wasn’t pneumonia, immediately sent me to a pulmonologist. Was given a walking test and scheduled for a bronchoscopy and diagnosed with IPF. That doctor then referred me to a doctor at the UW Medical Center who specializes in research and treatment of this disease. More tests then an open lung biopsy confirmed the IPF. From start to finish, it was probably 4 to 5 months. Mostly for scheduling appointments, but only about 3 weeks for a doctor knowing what it was.
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Hello Sam,
Yes it was that ever persistent cough. On a return trip from Houston, out of the blue every time I breathed deep I would cough. At first I thought nothing of it, thinking it would go away. Then the shortness of breath showed up when I did my running. I went and had a virtual physical and all was good except the radiologist said “you have spot on your lungs you should look into that.” I was still physically active. Long story short, I did go to my pulmonologist and he sent me to Inova for further examination. This is where the diagnosis was made. The rest is history.
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Diagnosed with “pneumonia” Nov. 2021. First time at urgent care. I thought it odd that I had no symptoms other than shortness of breath upon exertion. Two courses of antibiotics; no improvement. Went to emergency dept. of local hospital after follow up at urgent care, where my primary care MD asked me to go. Urgent care said I needed hospital. ED doc said “You have pulmonary fibrosis; it’s progressive”. A couple months later I got into an ILD center where extensive bloodwork, history and exam pointed to autoimmune ILD. I was put on mycophenolate with predisone taper during the first two months of mycophenolate therapy. In April 2022, I was much improved. At that point, rheumatologist at the ILD center said she was confident I had ILD secondary to (caused by) autoimmune Sjogren’s Disease. I remain on mycophenolate with no progression of fibrosis. So I was fortunate-and well resourced and informed. Only 4.5 months to specific diagnosis. And I was already getting better with the mycophenolate reducing inflammation (ground glass).
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