Pulmonary Fibrosis News Community › Forums › Welcome Lounge › Post covid PF, trying to adjust › Reply To: Post covid PF, trying to adjust
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MG Community Member
MemberDecember 14, 2023 at 2:58 pmMy husband had covid pneumonia and the resulting Cytokine storm of inflammation. We both decided at the beginning of the pandemic that neither of us wanted to be on a ventilator. We got it at the same time. We both just had fatigue and sore throats, no other symptoms (we had omni version of covid). However, as my symptoms were gone after 8-10 days, my husband started with a dry cough but did not feel bad. After 10 days his O2 started dropping a little each day. Took him to the ER on day 13. He had covid pneumonia and blood clots in both legs despite being on Xarealto for a clotting condition. He was also insulin dependent type 2 diabetes, age 68. The hospitalist waited 3 days to ask for a pulmonary consult. The pulmonologist immediately requested EU to use baricitinib (rheumatoid arthritis drug) to stop the cytokine storm and save his life–it worked but the damage apparently had already been done to his lungs. I believe if the pulmonologist was consulted on day one, much of that damage to his lungs would have been prevented. He came home after 18 days on 2 liters of oxygen and was doing well with home PT. The third week home his oxygen levels started dropping into the 80s. Went back to the hospital in an ambulance and was diagnosed with PF.
I read every medical journal article on Covid pneumonia and PF. Several said the scarring from covid was temporary and would improve. He was hospitalized 3 times in 4 months. Went to inpatient pulmonary rehab for 10 days and that did seem to help some for a while. However, his pulmonary function was only 31%. He stayed on 5-8 liters of oxygen most of the time. This led to hypercapnia (high CO2 levels). That is what killed him. He died 13 months after getting covid. He had just turned 70 when he died.
They had mentioned a lung transplant after his third hospitalization, but with his other health problems and age, he did not qualify.
Your age and having a lung function over 50% bodes well for you. Exercise every day is the key from everything I have seen and read. Strengthen your core muscles so your lungs have some help when you breathe. Down the road, if you need a lung transplant, do it sooner than later before your health deteriorates.