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Kathleen Ryan replied to the topic How to Decide When to Stop Working with Pulmonary Fibrosis. in the forum Employment & Pulmonary Fibrosis 2 months, 1 week ago
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. Ulti…[Read more]
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Kathleen Ryan replied to the topic PFTs and a Reduction in DLCO Number. in the forum Upcoming Medical Appointments: Q&As 4 months, 3 weeks ago
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…[Read more]
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Kathleen Ryan replied to the topic Can’t do PFT in the forum Diagnosis Information and General Questions 5 months, 3 weeks ago
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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Kathleen Ryan replied to the topic Covid causing pulmonary fibrosis in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 6 months, 4 weeks ago
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…[Read more]
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Kathleen Ryan replied to the topic Hiatus Hernia in the forum Diagnosis Information and General Questions 7 months ago
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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Kathleen Ryan replied to the topic Hiatus Hernia in the forum Diagnosis Information and General Questions 7 months ago
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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Kathleen Ryan replied to the topic How to Decide When to Stop Working with Pulmonary Fibrosis. in the forum Employment & Pulmonary Fibrosis 7 months, 2 weeks ago
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 kno…[Read more]
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Kathleen Ryan replied to the topic Esbriet and coughing in the forum Esbriet (Pirfenidone) 7 months, 3 weeks ago
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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Kathleen Ryan replied to the topic Everyday Challenges of Living with Pulmonary Fibrosis in the forum Living with Pulmonary Fibrosis: 50+ 9 months ago
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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Kathleen Ryan replied to the topic Exercising off oxygen? in the forum Join the Discussion: Welcome to all PF/IPF Patients 10 months, 1 week ago
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 c…[Read more]
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Kathleen Ryan replied to the topic Mental Health & Chronic Illness Advice in the forum Living with Pulmonary Fibrosis: 50+ 11 months, 3 weeks ago
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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Kathleen Ryan replied to the topic Mental Health & Chronic Illness Advice in the forum Living with Pulmonary Fibrosis: 50+ 1 year ago
Thank you, Char.
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Kathleen Ryan replied to the topic Mental Health & Chronic Illness Advice in the forum Living with Pulmonary Fibrosis: 50+ 1 year ago
Thank you, Steve. Good to know we all have this group and God!
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Kathleen Ryan replied to the topic Mental Health & Chronic Illness Advice in the forum Living with Pulmonary Fibrosis: 50+ 1 year ago
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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Kathleen Ryan replied to the topic Extreme Fatigue in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 3 months ago
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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Kathleen Ryan replied to the topic Household Chores & IPF! in the forum Diagnosis Information and General Questions 1 year, 3 months ago
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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Kathleen Ryan replied to the topic What Do You Wish You'd Known When You Were Diagnosed with PF? in the forum Diagnosis Information and General Questions 1 year, 6 months ago
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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Kathleen Ryan replied to the topic IPF without cough in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 11 months ago
Thank you for the explanation. I’ve often wondered what it all meant!
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Kathleen Ryan replied to the topic Shortness of breath and normal oxygen reading in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 11 months ago
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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Kathleen Ryan replied to the topic Fevers & IPF Patients: Let's Talk About Em' in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 11 months ago
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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