Post Covid 19 and Pulmonary Fibrosis

I will share with you my husband's experience with IPF, discovered after
major heart surgery seven years ago. He was given "two or three" years to
live. He was started on Ofev twice daily.

It has been seven years and he suffered no disability until he experiencd
mild covid Aug, 2022. In Sept, 2022, long covid SOB began. No other
symptoms, just serious SOB with activity. He now must use O2, 2 ml.

My advice, do take Ofev. It will extend your life. Try to avoid covid.

I too was in the hospital for 3 weeks, a year ago with covid pneumonia and on oxygen since, I had pneumonia the following May of 2022, and 3 months of shingles in July. I have been seeing my pulmonologist after checking a CT scan in September and another this past January, they seem to be the same. He said I have Post Inflammatory Pulmonary Fibrosis that was stable. My pulmonary function test came back better than the one in September, and since taking pepcid seems to not cough as much, he would like me to keep doing what I’m doing. I do steam my breathing every morning and evening with some eucalyptus mixed with other oils which seems to keep my mucous looser.
I am still on oxygen because I’m in a mile high elevation, but soon to move and hopefully not have to use it except for over exertion or bedtime.
The lady in my room at the hospital was told that her lungs were scarred too.
My husband has read that Omicron really messed with the respiratory area.
I will be seeing a different pulmonologist after we move and he does a lot of research, so it will be interesting what he has to offer.

sunny8

Thank you for sharimg your experience. I am sorry that your husband is going thru this. I will pray for him!

It is very difficult to wean off the oxygen once you get used to it. I read lots of stories and articles on people trying to get off it. Diaphramatic breathing exercises and a host of other
treatments finally got me weaned off but I still have to take it easy for I do not have a lot of reserve. Did your husband experience any side effects from OFEV?

Thank You!
God Bless!

mkportzen,

Thanks for your reply! My situation is very similiar to yours. My June and Dec CT scans said pretty much the same but the Dec said it was stable. My Jan PFT did improve slightly over the one from Apr 2022. It was very difficult for me to wean off the oxygen. I read an article about a woman with Long Covid and how she got back to normal with diaphramgmatic breathing exercises and a treatment program. Later in the article I found out her husband is a pulmonologist but it gave me inspiration and I did research on it and started my own program. I did some nebulizer treatments at home along with some herbal suppliments. I got to the point where I only needed oxygen when I was exerting myself but I could sleep at night and and have low activity without supplemental O2. Then my Dr finally put me in Pulmonary Rehab and after a couple weeks I could walk and do light activity without any O2 even with all the lumg fibrosis. Hang in there, you got to keep scratching and digging and you will find out what helps you the best. I am sure you have a pulse oximeter. Learn breathing techniques and see which ones make your O2 the best then practice those every day, multiple times.

Take Care!

Thank you for your text, I feel we are pretty much in the same area of post covid. I will check out the breathing excercises. I was told by my pulmonologist to stay active. As we are trying to move, all the packing and getting our house in order has really kept me very active and I believe that has helped my breathing tremendously. When I am at lower elevations I notice I can do even light duties without oxygen, with breathing excercises and a lower elevation I’m hoping to do even better. As I say, I’m here today because of prayer and the good Lord has a mission for me, so I’ll keep searching for that mission. I was told by my pulmonologist I am lucky to be alive, so I feel blessed for every day I am better.

My husband had Covid (omnicron) February 2022 and was admitted with Covid pneumonia and blood clots in both legs despite being on Xarelto for a clotting disorder. He spent 18 days in hospital. He was critical but did not want to go on a ventilator. Was given baricitinib, and it was a miracle--all his inflammation markers dropped to almost normal in 24 hours. He went home on 2 L of oxygen and did well for about 2 weeks (no mention of pulmonary fibrosis in lungs). He then had a flare-up and quickly got worse being unable to get his oxygen sats above 82%. CT scan showed scarring in the bottom third of both lungs and inflammation in the middle third of his lungs. Was in the hospital for 14 days and went home on 6 L of oxygen and Prednisone 40 mg. When Prednisone tapered to 10 mg. had another flare-up and back in the hospital for 10 days. This time he went to inpatient pulmonary rehab for 10 days. It really helped but he needed a longer stay that insurance would not pay for. Was okay for about a month and then another flare-up at the end of May when the Prednisone was tapered. Went to out-patient pulmonary rehab and was okay for 5 months--was started on Cellcept in June to use as a steroid sparing drug and tapered down to 5 mg. with no problems. My husband also has diabetes and the steroids caused his blood sugars to skyrocket. He started to fill bad again the end of October. He woke up every morning with a headache and he started having tremors--oxygen sats were ok on 5-6 L. Went back in hospital November 7 due to CO2 retention--we did not know that could happen. His arterial CO2 was 102--a very critical level. The headaches and tremors were a sign but nobody told us to watch out for that. In hospital a week and could not stand or get out of bed. They discharged him to inpatient rehab. He left on 4L of oxygen. Found out too much oxygen can cause the CO2 retention. My husband has high anxiety and wanted the oxygen turned up with every little movement. After a few days in inpatient rehab his CO2 level was back to normal and he was kept at 3 L even with exercise. His sats stayed 93-95 which turns out to be better than trying to keep it at 96 or above. However, he started slacking on his exercise and ended back in the hospital on Christmas eve with CO2 retention again for five days. In the ER they needed to put him on 12 L. He had an arterial CO2 of 98--again a critically high level. Again he could not stand or walk. Was discharged to inpatient rehab for 12 days and he rapidly improved.

After a year of this, I am convinced that exercise is the key to improvement in quality of life. You must make the maximum usage of the normal lung tissue you have. In the inpatient rehab, he was receiving 3 hours of OT and PT every day. I wish the insurance would see that if could stay at least thirty days in inpatient rehab, they would save on his not having to be hospitalized so often. Just like you, his CT scans and chest x-rays look the same. The fibrosis has not progressed, but the inflammation remains--not sure why that does not clear up and the pulmonologist has no answers.

He is signed up to participate in a clinical trial his pulmonologist suggested for a new anti-fibrotic that starts in July. However. it is for pulmonary fibrosis in general and not specifically related to COVID 19. I am thinking if his fibrosis is not progressing, he does not need to chance being in this trial--we will see how he is doing regarding the fibrosis and if he is the same, may not participate. We are seeing another pulmonologist on February 28 to get another opinion.

Has done well on Ofev until this past year when he now experiences diarrhea off and on. He takes immodium am and pm now which helps that. Since covid in Aug '22, his taste and appetite have been affected too. Trying to keep his weight up now.

Was doing great till that da-n covid.

sbt19,

Your right on exercise being the key!

When I started improving I had trouble with severe headaches, especially at night, because my O2 sats were getting too high when I was sleeping. I eventually was able to stop using O2 when I slept, but before then I had all sorts of trouble with pain, nervous system, swelling, muscle cramps, etc. When I finally got to where I could travel we loaded up the oxygen bottle and the wife would take me for accupuncture. I can tell you without a doubt that it calmed my nerves down and I would go to sleep every time. I would be so relaxed and calm after the treatment. It would last for a few days then the symptoms would start coming back, but we went twice a week. After several weeks my nerves and systems calmed down and started getting back to normal and being more sensitive to the accupuncture, so I stopped it and my systems stayed calm. Keep Praying, reading, and searching because there is something out there that will help your husband get to some relief stability.

God Bless!

Thank you for sharing your experience. I had not heard about acupuncture for anxiety. I will try to talk my husband into trying it. At this point, I think he would try anything to be able to relax.