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  • Cynthia became a registered member 1 year, 4 months ago

    • Hello Cynthia, welcome to your pulmonary fibrosis forum. Thank you for joining.

      • Thanks. I’m already finding it helpful. I was just diagnosed this week and I’m still in a bit of a daze.

        • Cynthia –
          I totally understand you being in a bit of a daze. I have had a dry hacking cough for over 5 years and primary care thought it was from acid reflux. In Sept of 2018 it got much worse and I was referred out to a pulmonary doctor. I had various tests which ruled out many things. Pulmonary doctor thought it was either IPF or NSIP. I ask for a referral out to a larger hospital which has a huge lung clinic. In it now the end of May 2019 when after a VATS lung biopsy I was diagnosed with UIP – Usual Interstitial Lung disease. I have a meeting with my pulmonary doctor on Friday and will find out where we go from here. Late last fall I transferred all my doctors to The Ohio State University since I feel they deal more with ILD diseases than other hospitals around me.
          Hang in there.

          • Yes, I had that hacking cough for two years and GP thought it was post-nasal drip and acid reflux. I did have a chest x-ray and a breathing test a year and a half ago and they were normal. But last month I got another chest x-ray and radiologist saw interstitial lung disease. A CT scan confirmed it. They suspect rheumatoid arthritis. I’ve decided I’m going to pursue this in Boston at Brigham & Women’s where they have a whole unit devoted to ILD. I liked my pulmonologist here in Providence but I want people who work with this disease every day.

            • Totally understand. I really liked my first pulmonologist too but felt that the expertise at OSU was too good to pass up. I feel they see many more cases of ILD than what is seen at my closer hospital. Best hospitals in Ohio for lung diseases are The Ohio State University (Columbus), the Cleveland Clinic (Cleveland) and University of Cincinnati (Cinncinnati). I am 30 minutes from OSU, 2 hours from Cleveland and 1 1/2 to 2 hours to Cincinnati so I picked OSU.

      • I noticed you told another new member to pay no attention to the life expectancy of 3 to 5 years that you see online. So that’s not true? That would make me feel a little better if I can also expect some quality of life.

        • Every case is different. Most centers of excellence have gotten away from telling their patients this. People are diagnosed at differing levels of the disease. “ Patients with pulmonary fibrosis experience disease progression at different rates. Some patients progress slowly and live with PF for many years, while others decline more quickly.” This is from the American lung association. I think the person was not even on oxygen. Doctors speculate I had ipf 4-5 years before I was officially diagnosed. Mark

    • @Cynthia, Did you find out yet what caused your lung disease?

      • They seem to agree it’s an autoimmune issue; now they’re trying to determine which one. I see a pulmonologist this Thursday who specializes in interstitial lung disease. I’m hoping he can answer a lot of my questions. I’m finding I really have to tell everyone about my diagnosis now because my cough has been bad and I feel it’s obvious to them it’s not a cold. My mood continues to be all over the place.

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