Kathleen Ryan
Forum Replies Created
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Hi Charlene, I appreciate the topic because I’ve been having the same symptoms. I didn’t realize that throat clearing is a sign of progression of the disease. I’ve never brought it up to my doctor because I didn’t feel it was important. Thanks so much for the info.
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I had covid in March of 2020. Now I have pf. Mine was confirmed by a HRCT while I was hospitalized for pneumonia in November of 2020. My pulmonologist said it was a result of covid – I had already been diagnosed with bronchiectasis and Copd, and now this.
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Yes, thanks! I will definitely ask at my next appt
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The same is happening with me. My oxygen levels are ok, but always short of breath. I’m glad I’m not alone with this problem.
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Christie, thank you so much for the post! I will definitely mention this to my doctor. I see him next month.
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Ida, thank you for clarifying. I hope you have a positive answer when you have your next appointment. It seems that gerd or sinus issues are somehow all connected to IPF. I think it’s a shame that more isn’t known about this disease.
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Thank you Ray and Ben for your ideas. Ben, I think mine is more inside the lung, and it comes at different times. I have noticed it gets worse when I breathe in cold air – oxygen hitting the damaged areas?
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Anne, I’m so sorry that happened to you. I know how scary that is. It’s so difficult to be clear headed when you’re in a panic. The first time this happened to me, like you, I waited for about an hour and tried nebulizer treatments and rescue inhalers. When the ambulance came, my oxygen was in the 40s. Since that night, I just call 911 immediately.
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Hi Jerry and everyone. It’s comforting to know all my symptoms – exhaustion in particular, are shared by all of you. Simple things – taking a shower – seem like an impossible mountain to climb. I guess I’m trying to figure out what living my life means. Most days it’s watching tv or doing a puzzle. I play with my dog a bit, but I get tired so quickly. Trying to be optimistic while still dealing with reality is a challenge, as I know it is for all of us. The difficulty I have is accepting what my life is since pulmonary fibrosis. I only need oxygen at certain times, so I’m trying to take advantage of the additional freedoms I have without needing to carry oxy wherever I go. I feel an urgency not to waste this time, and then I get frustrated when I’m unable to do something I’d like to do. I’m so glad all of you are here!!
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Hi, Charlene. Thanks for your good ideas about medications. I see my pulmonologist next month and also will have an x-ray at that time. I’ll be sure to ask him about anti-fibrotic drugs. Last I saw him he said he just wants to keep me as comfortable as possible.
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I had covid and was intubated for 17 days, hospitalized for nearly two months, I recovered , but with worsened ipf and copd.
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Thank you, Mark, for the link. It’s very helpful