Kathleen Ryan

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]

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]

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.

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]

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

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

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]

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

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.

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]

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!

Thank you, Char.

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

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.

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!

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.

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

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

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.

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!