Forum Replies Created

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  • Kathleen Ryan

    Member
    December 27, 2023 at 8:34 am in reply to: Post covid PF, trying to adjust

    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,

  • Kathleen Ryan

    Member
    March 28, 2023 at 5:28 pm in reply to: How to Decide When to Stop Working with Pulmonary Fibrosis.

    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.

  • Kathleen Ryan

    Member
    January 13, 2023 at 8:30 am in reply to: PFTs and a Reduction in DLCO Number.

    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.

  • Kathleen Ryan

    Member
    December 16, 2022 at 6:58 am in reply to: Can’t do PFT

    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.

  • Kathleen Ryan

    Member
    November 8, 2022 at 3:17 pm in reply to: Hiatus Hernia

    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

  • Kathleen Ryan

    Member
    November 8, 2022 at 3:17 pm in reply to: Hiatus Hernia

    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

  • Kathleen Ryan

    Member
    October 26, 2022 at 7:32 am in reply to: How to Decide When to Stop Working with Pulmonary Fibrosis.

    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

  • Kathleen Ryan

    Member
    September 9, 2022 at 7:54 am in reply to: Everyday Challenges of Living with Pulmonary Fibrosis

    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.

  • Kathleen Ryan

    Member
    August 2, 2022 at 4:10 pm in reply to: Exercising off oxygen?

    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.

  • Kathleen Ryan

    Member
    May 20, 2022 at 7:51 am in reply to: Mental Health & Chronic Illness Advice

    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.

  • Kathleen Ryan

    Member
    February 15, 2022 at 2:18 pm in reply to: Extreme Fatigue

    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!

  • Kathleen Ryan

    Member
    February 11, 2022 at 8:40 am in reply to: Household Chores & IPF!

    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.

  • Kathleen Ryan

    Member
    June 25, 2021 at 12:04 pm in reply to: Shortness of breath and normal oxygen reading

    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.

  • Kathleen Ryan

    Member
    March 31, 2021 at 10:01 am in reply to: Fluctuating Body Temperatures – Cold & Hot

    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.

  • Kathleen Ryan

    Member
    November 11, 2022 at 9:07 am in reply to: Covid causing pulmonary fibrosis

    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,

  • Kathleen Ryan

    Member
    October 18, 2022 at 4:19 pm in reply to: Esbriet and coughing

    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

  • Kathleen Ryan

    Member
    June 17, 2022 at 7:58 am in reply to: Mental Health & Chronic Illness Advice

    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!

  • Kathleen Ryan

    Member
    May 25, 2022 at 7:30 am in reply to: Mental Health & Chronic Illness Advice

    Thank you, Char.

  • Kathleen Ryan

    Member
    May 21, 2022 at 8:05 am in reply to: Mental Health & Chronic Illness Advice

    Thank you, Steve.  Good to know we all have this group and God!

  • Kathleen Ryan

    Member
    November 21, 2021 at 8:13 am in reply to: What Do You Wish You’d Known When You Were Diagnosed with PF?

    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

  • Kathleen Ryan

    Member
    June 25, 2021 at 12:20 pm in reply to: IPF without cough

    Thank you for the explanation. I’ve often wondered what it all meant!

  • Kathleen Ryan

    Member
    June 16, 2021 at 9:15 am in reply to: Fevers & IPF Patients: Let’s Talk About Em’

    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!

  • Kathleen Ryan

    Member
    June 16, 2021 at 9:09 am in reply to: Disabled Identity Crisis & Accommodations

    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.

  • Kathleen Ryan

    Member
    March 31, 2021 at 5:38 pm in reply to: Increased Throat Clearing

    Hello, Nigel. Thank you for the great information! Very helpful!

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