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Post covid PF, trying to adjust
Hello, I am new to the board and thought I would tell my story here. It started July 2021.
I was a very healthy and active 47 year old. Unvaccinated, i wound up getting Covid (delta) after a trip to Florida to visit my in-laws. My wife, teenage son, and myself all tested positive upon returning but I was the only one that had symptoms. after 1 week of sever cold symptoms, my breathing started getting bad and my wife made me go to the ER. They immediately admitted me on 8/2/2021, and sent my wife home to quarantine for 14 days. Each day I got a little worse, going to ICU after about 8 days. On the 14th day, my wife was able to come up to be with me, about 3 PM on 8/16. Ironically, about 3 hours later my breathing started crashing so they intubated me and put me out. I woke up in an LTACH on 10/5/2021 off of the vent and on high flow O2. During my time out I had a couple different pneumonia’s, and it took a long time for me to get weaned off. Had a couple days it was really grim and they thought I wouldn’t make it. I was supposedly fighting the vent so bad they kept me paralyzed and sedated the entire time. All the paralytics for so long left me with permanent nerve damage in my legs – I am told, for being in a sedated state in bed for so long. I am told I was so full of distress and anxiety (i don’t remember any of it) I was a different person – a violent person, etc. After 30 days in LTACH, I was sent home. My wife is a PT so they felt comfortable that I would get more therapy at home with her than in a rehab hospital for another 30 days.
I finally got off O2 during the day a couple days after Christmas 2021. I still to this day MUST use it at night, when I sleep or when I lay down and relax because my O2 will dip down into the low 80’s. I get a PGT done every quarter as well as CT’s of my lungs. I have severe fibrosis, ground glass opacities, etc. PFT’s indicate my lungs have made some improvement but have plateaued off at about 57% total capacity. I was put on Ofev in March 2022 and have been on it ever since. My pulmonologist doesn’t want me to come off for fear that my lungs will start declining. I was recently moved to the 150 mg dose from the 200 mg due to some sever stomach problems I was having.
Today, I am back to work (in an office) and pretty much any activity gets me breathing heavily…. walk outside to the mail, I sound like I just ran a marathon…still take Ofev, and Trelegy and am told this is the new normal now. I can do most everything I used to do, but much much slower. My O2 holds steady at rest in the low 90’s but if I take off walking, after about 5-7 mins, I will decline down to the low 80’s. I can stop, and recover fairly quickly though.
I always understood PF to be progressive and while mine is a result of Covid, I am told it “shouldn’t” progress, but they don’t really know. I am hoping to learn more about other peoples journeys and try to get an understanding of what life is going to be like down the road. My wife thinks I shouldn’t dwell on it and this makes me miserable but I cant stop reading and researching about this. Is my life going to be shortened? Will I eventually need a lung transplant, etc. so many questions. I really want to understand this disease better and while not traditional PF, I sure wish I could find folks that have it as a result of covid like I do. Anyway, thanks for reading this and I look forward to learning more from this group.
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18 Replies
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I just read your description of your advance of pf. Have to ask did you have gerd before you became so ill? Have done some reading from other patients and see there is a correlation with gerd and pf. I had gerd for many years and have became interested in this disease. I Believe the information out there is important for our disease .
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Hi there, I did from time to time but it was mostly triggered by what I ate… pizza, or tomato based foods would cause it but I didn’t have it on a recurring basis. Cutting the foods out that triggered it helped a lot.
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I contacted COVID in December of 2019. My primary care treated me for what he thought was bronchitis, then pneumonia. In March of 2020 I was referred to a pulmonologist who diagnosed COVID.
The COVID cough continued for several months until I was sent for a HRCT. I also had the ground glass and pulmonary fibrosis. Six months later I had another HRCT where they saw emphysema in addition to the fibrosis. My new diagnosis is CPFE ( combined pulmonary fibrosis with emphysema. How does this relate to long COVID??? I am on oxygen 24/7 and am still unpacking all of this information. Who knows how this will go in the future. I am 69 with autoimmune so I would not be a candidate for lung transplant. I am taking it day by day. I am on Trelegy which has helped a lot. It is the only thing that has stopped my cough. Best of luck.
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My situation is very similar to yours. Got Covid July 2021 and was in LTACH for 5 months on ventilator for two months. Ended up on oxygen 24/7 with diagnosis of Covid lungs similar description as you mentioned. Knew of people whose lungs got better after a year of PT. So I workout religiously for a year but my lungs never got better and started to decline.
Three months ago received a double lung transplant. Doctor thought the surgery would last 10-12 hours due having Covid lungs but it only lasted 8 hours. He said I did not have Covid lungs. They suspected that I had an underlining pulmonary fibrosis and that the Covid accelerated the disease.
Hopes this helps.
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Hello, I’m in the same situation, I’m 39 years old and in 2022 I had covid for a week, I lay in bed with a fever, a headache, I took treatment on the doctor’s recommendation, I didn’t have any breathing difficulties a month after covid, I had an x-ray, no sa I noticed nothing but the sequelae from tuberculosis 15 years ago, now in 2023, one year after covid, I started having breathing difficulties, I could no longer breathe deeply, I felt like coughing continuously and I couldn’t, I had another x-ray and opacities appeared linear in the right lung and restrictive spirometry 70% lung capacity in October I started to have breathing difficulties again, the pulse oximeter shows 97-98% but I was short of air, I went to the emergency room and a computer tomography was performed in which bands came out of extra pulmonary fibrosis at the moment I don’t know where to get it I was given a forspiro inhaler at the moment the doctor who deals with interstitial lung diseases I can see him in 2 months to know if this fibrosis is progressive.
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Very similar COVID (Delta) story for me as well in Florida, August 2021. In ICU from August to November 2021. Intubated 64 days, heavily sedated. When I woke up in November, did not have recollection of what happened and what I had been through. I was on high flow oxygen 24/7 with the expectation of room air soon. I went home in December 2021 using a walker with supplemental oxygen 24/7. Diagnosed with PF in February 2022. Quickly improved and I am now able to function most of the time without oxygen. Improvement in my PFT February 2022 (less than 50% lung function) to September 2023 (67%). I can walk short distances without oxygen. Once I overexert myself (exercise, carry heavy items, stairs, vacuum) without using oxygen, I drop to mid 80s but can recover quickly. I am not on any fibrotic drugs. Working on a sleep study now to rule out sleep apnea. I have an elevated diaphragm which I was told a CPAP would help more than supplemental oxygen while sleeping. Also, I still cough quite a bit, especially after eating, and am scheduled for a few tests including a sniff test. Scheduled to see a speech therapist. I am fatigued most days. I take NAC daily. Looking forward to answers from my doctors and tests.
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Do you have gird,where you have coughing and phlegm a lot?some studies are saying that gerd is a lead in to IPf. I Have gerd for years and now 5years into IPf. Use esprit 3 times a day to slow the progression.
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I have not been diagnosed with Gerd but will inquire on my next dr visit.
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My 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.
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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,
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Still think not getting vaccinated was a good choice?
Perhaps this could all have been avoided.-
I was vaccinated as soon as it was available, I was boosted for each variant. I got COVID in Jan 2020, I got each variant. So I ended up getting it 5 times. I am beginning to think I may be one of those who the vaccine doesn’t work for. I did take the RSV, pneumonia, and flu shot this fall.
I developed pulmonary fibrosis after the first COVID-19.
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In hindsight and after going through what I did, I wish I would have been vax’d. But that said, the rest of my family was unvax’d as well and didn’t have any symptoms so i don’t think anyone really knows why some got it so bad and others didn’t. I’m hearing some interesting thigs that zero in on blood type, but who knows.
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You tell me. My wife had three totally different cancers is row. When the vaccine became available we called MD Anderson where she was treated for all three cancers. They told us, on several inquiries, they could not recommend the vaccine. We both agreed to forgo the shot and try to isolate. We are still here and haven’t had any covid issues.
Now, what would you have done, if it even matters?
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Hi, I feel for you, while I already had mild IPF in June 2021 while on holiday in Portugal, I contracted COVID-19 on day two. I was very ill and my breathing was badly affected, I literally couldn’t walk ten yards without having to stop and rest. Once I returned home to Scotland my breathing became much worse and eventually, I collapsed and was rushed into ICU at the Hospital. I was immediately put onto oxygen and the admitting Doctor was shocked at my blood oxygen level which was down at 40% – I was lucky to be alive at that point. After a month in hospital, I finally got off oxygen and was allowed home. My consultant said that when I was admitted into hospital I was riddled (his words) with Covid which had ravaged my lungs and doubled the size of my PF scaring. I also had two bouts of pneumonia while in hospital which didn’t help.
At home, I was a poor old thing who could not do anything, so oxygen at home was prescribed and OFEV 200. Since that time I have improved significantly and I now attend a vigorous rehabilitation workout weekly, albeit with portable oxygen. I do not need oxygen when walking about but if I walk up inclines or exert myself, I certainly do. I will not get better and understand IPF will shorten my life – so I am trying to make the most of it. I have purchased at great expense a portable Oxygen Concentrator which is approved by all airlines, so overseas travel is now available to me again. I perhaps should add that I am a reasonably active retired 76 year old. Best wishes to you all! Oh and by the way, HAPPY HOGMANAY and a happy New Year!
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Hang in there. Your condition may improve soon. I developed difficulty breathing as a result of Covid 19 in December 2019. After years of testing, watchful waiting diagnosed with Pulmonary Fibrosis as result of CV19 in Oct 2022. It was a long road with lots of uncertainty and few answers. Like many PF patients and care-givers started researching and multiple studies published on Pubmed conclude 44% CV19 patients develop Pulmonary Fibrosis as result of the infection. This applies to patients who were hospitalized and on ventilators as well as people like me who had mild case and no extraordinary medical interventions.
Once diagnosed I was provided opportunity to enter Pulmonary Rehab. This program was game- changer. Enrolled in Noom, lost 24 lbs. Granted ADA accommodation to work from home. Feeling much better.
I’ve met a number of people who developed PF after Covid and we’re all at different levels of disease progression. But my pulmonologist told me h has 20 patients like me and majority are improving.
If you can, enroll in Pulmonary Rehab and dedicate yourself to expanding your lung capacity your condition will improve. Take small steps at first to accomplish small goals.
It helped me to stay focused and positive and know you can improve, even if it’s slow at first. If you make these efforts there is strong likelihood that you will feel better, mentally and physically.
God bless
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Thank you for writing such a detailed story about your situation with Covid and PF. I hope the best for you. I particually relate to what you said about “My wife thinks I shouldn’t dwell on it and this makes me miserable but I cant stop reading and researching about this. Is my life going to be shortened? Will I eventually need a lung transplant, etc. so many questions.” I’m going through that as well – I’m constantly watching video seminars and presentations by and for medical professionals and reading as much as I can from reputable sources. I do get perhaps a bit too granular with this – I watched a hour presentaion by a radiololgist talking to other radiologists about how to distinquish the different types of UIP patterns in PF and IPF. I actually found it very interesting but my wife thinks I’m morbid and bonkers and should spend more time just living my life! However, I think we all have different ways of coping – mine is actually helped I think by getting more information I feel like I have greater tools and weapons with which to fight this disease – and also improve my abilities to tell if something seems right or not, in terms of medical advice. I worked as a nurse for 25 years before giving it up in 2000 – so I can more readily understand medical literature and such and find it interesting. That said, I’ve also learned to shut my mouth when I’ve crossed the line of TMI with my wife!
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Hi Larry:
Today we had an appointment with my wife (74 and in great health) with the pulmonologyst, after having a 2nd spirometry in 6 months, and the numbers had somewhat improved, FVC went for 89% to 96% but, DLCO went down 58% to 46% , however the dr, seems more concern of the possitive fvc numbers, for him that is important.
As you my wife got covid in2022 and took about 5 months to recover, but was a trip to a 5000mts city were we suspected something because she could not bread . we blamed to altitude but, once at home our family dr dicover a larger fibrotic in her lungs and refer her to a pneumonologyst, that he start investigating the cause, at first he say ipf, but after for a second oppinion, another dr, say that she may have some fibrosis before and covid kicked forward, as some of the previus writers. she still totally asymptomatic and excersising with heavy leg press and body work 2 times a week for 45 minutes, and walking about 6000 steps a day, drinking a lot of water, mataining humidity haigh in the house and the office, as we found the cough almos desapear in humind enviorement.
she also takes manuka hony and zink, and next week she will start green tea extract tyavigo as prescribed by the second pumonologyst as he is treaten some patients with it, as they cannot tolerate the regular ofev or esbriet.
i have been reading like you , a lot, enless hours as i still in desbelif , also with phsycological help, as my wife is my world, and try to do the best to keep her from declining, maybe she will not from this as her numbers are improving a bit.
good luck and keep posting your finds , as more new madicine will be available .
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