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…

Read more

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.… 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… 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… 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… 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… 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!

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… Read more

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

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.

Christie, thank you so much for the post!  I will definitely mention this to my doctor. I see him next month.

 

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.

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?

I hope someone can help answer this question – is burning in the chest common with pulmonary fibrosis, or is it a sign of something else? I’ve had it now for about a month and seems it’s here to stay. Thanks for your ideas.

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.

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.

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… Read more

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.

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.

I had covid and was intubated for 17 days, hospitalized for nearly two months,  I recovered , but with worsened ipf and copd.

Thank you, Mark, for the  link. It’s very helpful

Yes, thanks! I will definitely ask at my next appt

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.