Kathleen Ryan
Forum Replies Created
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Hi. My history is very similar to yours. As you, mine was covid related and I was told it may not progress, but my oxygen intake has had to increase with activity. I also have, from covid, bronchiectasis, which makes it much worse. I’m told that is progressive. I do everything I can to stay free of colds and viruses. I take zinc daily which my doctor said would help me stay less susceptible to viruses,
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I was diagnosed in 2020. At that I was teaching online. I loved it! Being a teacher was part of my identity. By mid 2021 I was unable to talk with enthusiasm when teaching elementary students due to shortness of breath. I tried cutting back hours, but it seemed sleep issues increased at that same time with coughing and gerd attacks. Ultimately I wasn’t able to continue even part time. I agree, when you’re forced to retire or go on disability, all that free time grows old very fast. I always imagined being active when I retired, but not being able to even garden has left me depressed. I’m very grateful for my son, who makes sure I get out to do small things and gets me out of the house. In this, I’m incredibly blessed.
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I just found this post, and its relevant to me. My DLCO scores were severe at 38 for the past two years, and went to 43 with my most recent pft. ( I was diagnosed in 2020) I’ve tried to find answers, and I found this article . https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4419325/. I have an appointment in a couple weeks, and this is one of my top questions.
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It’s very difficult for me to exhale, and I believe it coordinates to my DLCO – diffusion capacity or exchange of gases. My score is very low. Your dad’s score will be listed on his PF test results. Breathing techniques can be of help.
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Hi everyone,
I also have a hiatus hernia. It was diagnosed about a year after my fibrosis diagnosis. I take Nexium, but I’m often up at night with gerd. I find that a gerd attack increases mucus and my cough. It seems the two are connected
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Hi everyone,
I also have a hiatus hernia. It was diagnosed about a year after my fibrosis diagnosis. I take Nexium, but I’m often up at night with gerd. I find that a gerd attack increases mucus and my cough. It seems the two are connected
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Hi everyone. I was diagnosed in 2019 and after having covid in 2020, I tried to resume working as a online teacher, but it wasn’t possible. I was missing classes, and this disease is so unpredictable that it wasn’t fair to my students. I miss it so much! I went on disability in 2020, and it’s depressing. I try to keep busy, but as everyone knows, there’s a day to day battle to keep spirits up and smile
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Hi everyone. One part of this disease that’s so hard to accept is the physical limitations. I often start the day with, what used to be, normal plans, and find I can’t complete them. One activity a day – grocery shopping, or cooking. is all I can comfortably do. The frustration of this is one of the worst symptoms of this disease.
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Hi everyone1 I recently completed a 9 week pulmonary rehab, and it showed I improved 15% . During this, my PT decreased my oxygen to see how I did, and ultimately I still needed the O2. I could walk further before I was too sob to go on, so I did improve, but I think it’s more or less just getting in shape overall. I do feel much more confident in being independent since I completed the therapy.
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Support groups like this are so helpful to me! I think that counseling should be a consideration. I often feel guilty about talking to my son about my disease. I don’t want it to define our relationship. It’s a tricky road for me.
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I’m tired all the time, and sleep about 12 hours a night! I’ve learned to plan to do one thing a day, and that seems to keep me stable. One day I’ll cook, another do laundry, and so on. More than that is too much for one day!
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This is such a challenge for me, too. Pushing the vacuum is impossible, and I wait for my son to help me. I don’t want him being responsible for me like that, and it’s difficult to ask for help.
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Hi Terry. I’m so sorry you’re not getting answers from your doctor – I know that can be very frustrating. I have the same issue with oxygen. The reading can be 94 or 95 while I feel a terrible chest tightness. Doesn’t make sense because I would bet the farm it had fallen to the 80’s. It does go to the mid 80’s when I walk or exert myself.
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Hi Marianne,
the same happens to me frequently. Last night I was literally shaking from cold, and a few hours later, sweating from being so hot! Usually when I get that chilled it takes a heated mattress pad, socks, long johns and my robe under many blankets for several hours to feel ok again. There’s so much to figure out with this disease.
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Hi Charlene and thank you for the support! Still have breathing issues, and I’m on O2 at night and 1-2 liters when active. When I see the pulmonologist again, I will definitely ask about the medications. I currently take two types of inhalers, but frankly, don’t think they do much. I do suggest pulmonary rehab. It helped and allows me to have a bit more confidence with this whole process,
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Hi. I also have gerd reflux, and I know that it produces phlegm the day after a night with reflux. A dry cough is daily with me. Like you, I don’t eat a few hours before bed, and it seems to prevent a lot of it
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Brenda, thank you! It’s a balancing act at times. It’s not silly trying to adjust to this new way of life. For me, it’s a daily task. I’m glad your son is involved. It’s not easy to accept help, but it’s good to know we have someone. Good luck!
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Thank you, Char.
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Thank you, Steve. Good to know we all have this group and God!
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Hi Paul,
My doctor feels that my PF also began with Covid. I was intubated for 17 days with Covid, and after recovery I continued to have problems. Six months later a CT scan show PF. Like you, I was coughing more. This was in March 2020. Take care, and keep positive!
Kathleen
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Thank you for the explanation. I’ve often wondered what it all meant!
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I often get the chills followed by being terribly hot at night, though I never took a temperature. Usually I’m ok the next day, but sometimes this is the precursor to a hospital stay. It seems that all of us have this chills/fever issue. My doctor won’t say it’s common with fibrosis, but it sure seems it is!
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Hi, Sam. I feel the same as you. One difference for me is that in my mind I still think I can do things I enjoy. When I try and fail, the depression is overwhelming. Not being able to work any longer still frustrates me and I get angry at myself that I can’t push through this. I have a great son who I rely on, but I don’t want to burden him and it’s just a horrible circle.
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Hello, Nigel. Thank you for the great information! Very helpful!