Look into a High resolution lung CT if you have shortness of breath

Posted by jazzygirl5 @jazzygirl5, Jun 4 1:25pm

I came down with Covid at the end of February, 2020 and have been continuously out of breath with exertion. I’ve seen my PCP and a pulmonologist many times. Pulmonologists are so inundated these days and it’s very hard to get an appointment but I found one at UCSF in San Francisco a year or so ago who could see me. She just ordered a high resolution lung CT, which I’ve never had, as well as a specialized pulmonary function test because my last 2 were getting continually worse. The pulmonary function test is next week and the CT showed something very serious that doesn’t show up on a regular chest CT, of which I’ve had many. She diagnosed me with bronchiolitis obliterans (what a name!) and looking it up, it seems like it’s not that uncommon in post covid. I have mild to moderate air trapping in the small airways which explains why I can’t exhale all my air and I feel like I’m suffocating. My oxygen level is always fine. She’s going to wait to treat me until after the pulmonary test. I also somehow caught Omicron about 6 weeks ago which exacerbated my shortness of breath amongst other long covid issues I have, especially fatigue. Anyway, just a heads up to anyone with continuing shortness of breath. Don’t give up and mention a high resolution lung CT to your Dr.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 group.

Thanks for the recommendations based on your recent experience, @jazzygirl5. As you look into your new diagnosis of bronchiolitis obliterans, I thought you might be interested in these related discussions in the Lung Health group:
– Bronchiolitis obliterans aka Popcorn Lung https://connect.mayoclinic.org/discussion/bronchiolitis-obliterans-aka-popcorn-lung/
– Bronchiolitis Obliterans with Organizing Pneumonia (BOOP) https://connect.mayoclinic.org/discussion/boop-pneumonia/
– Obliterative Bronchiolitis (OB) vs. ILD or CLD? https://connect.mayoclinic.org/discussion/obliterative-bronchiolitis/

It must be unsettling to feel like you're suffocating. What helps you? When will you have the pulmonary function test?

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@colleenyoung

Thanks for the recommendations based on your recent experience, @jazzygirl5. As you look into your new diagnosis of bronchiolitis obliterans, I thought you might be interested in these related discussions in the Lung Health group:
– Bronchiolitis obliterans aka Popcorn Lung https://connect.mayoclinic.org/discussion/bronchiolitis-obliterans-aka-popcorn-lung/
– Bronchiolitis Obliterans with Organizing Pneumonia (BOOP) https://connect.mayoclinic.org/discussion/boop-pneumonia/
– Obliterative Bronchiolitis (OB) vs. ILD or CLD? https://connect.mayoclinic.org/discussion/obliterative-bronchiolitis/

It must be unsettling to feel like you're suffocating. What helps you? When will you have the pulmonary function test?

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Thank you for these links, Colleen. I really appreciate it. Unfortunately, nothing helps as I’m always out of breath when I walk. The PFT is tomorrow. Funny, after seeing the results of the CT scan, my UCSF pulmonologist and the nurses in the pulmonary department are now concerned. Too bad it’s taken so long and I know I’m not the one. Be well!

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Thank you !
I am week 6 post covid, around day 14 started to have sob, o2 was dropping just with few steps. CT showed patchy ground glass opacities both lobes, although work up in ed was for PE as my xray was clean. I got iv decadron and 10 days decadron per covid protocol. My pulm md visited me in ed and told me she wasnt clear why hypoxic as "patchy" means mild and she will do high resolution ct to look for air trapping later when i can take full breaths. After i was done with decadron, my wheezing got worse, i am doing 4 – 5 nebulizers per day (atrovent and albuterol), my o2 doesnt drop as much – was in 60s and 70s with ambulation, but would recover once i stop or sit down. I am now about 88- 93 on RA, although i have been using o2 past few weeks. I walk slow, o2 holds above 95, but once i try any activities of daily living, o2 drops if i am on ra. I also feel at times i am suffocating, day time or night time, scary. One thing that i have tried, i switched from cpap to bipap at night and it helps. Well i couldnt really breath out against cpap.
I did look up OB and its irreversible ? Anyone knows whats the treatment ? I am also hoping about a year for lungs to recover ? @jazzygirl5 – i see you are in sf. Ucsf is a good medical center !
Have you done PFTs before? @coleenyoung – thanks for links !

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@lenchiksf

Thank you !
I am week 6 post covid, around day 14 started to have sob, o2 was dropping just with few steps. CT showed patchy ground glass opacities both lobes, although work up in ed was for PE as my xray was clean. I got iv decadron and 10 days decadron per covid protocol. My pulm md visited me in ed and told me she wasnt clear why hypoxic as "patchy" means mild and she will do high resolution ct to look for air trapping later when i can take full breaths. After i was done with decadron, my wheezing got worse, i am doing 4 – 5 nebulizers per day (atrovent and albuterol), my o2 doesnt drop as much – was in 60s and 70s with ambulation, but would recover once i stop or sit down. I am now about 88- 93 on RA, although i have been using o2 past few weeks. I walk slow, o2 holds above 95, but once i try any activities of daily living, o2 drops if i am on ra. I also feel at times i am suffocating, day time or night time, scary. One thing that i have tried, i switched from cpap to bipap at night and it helps. Well i couldnt really breath out against cpap.
I did look up OB and its irreversible ? Anyone knows whats the treatment ? I am also hoping about a year for lungs to recover ? @jazzygirl5 – i see you are in sf. Ucsf is a good medical center !
Have you done PFTs before? @coleenyoung – thanks for links !

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Hi Lenchiksf
Wow, I’m so sorry it’s been like this for you. I’ve never had low O2 sats, always 94-97. I can’t imagine how that must feel. Im surprised you weren’t vented with such low ones but you must have been hospitalized? I was for a few days with shortness of breath and chest pain but this was the week before covid was on the radar and they didn’t know what was wrong with me. It was the first variant here.
I’ve never used a cpap/ bipap but maybe it would help. Do you have sleep apnea? That could affect your breathing, too. I’ve been short of breath constantly with exertion since 2/2020 and no one knew about treating covid then. No covid tests either. No steroids, no nothing. I’m glad you’re not being dismissed and told “I don’t know why you’re not getting better!” I was for over 1.5 years and it was most exasperating and scary. I should take your advice and use my neb more often (I have albuterol and also duoneb) and was told to start on the steroid inhaler but it doesn’t really help me. I read that OB effects the small bronchioles which are hard to reach with meds. I’m surprised they didn’t order a PFT for you. You should ask as it seems you’re getting decent care. Yes, you are right, I do live in SF. I’m usually a Sutter patient but could only find a pulmonologist at UC and it took months to get in while I felt like you know what. I’ve also heard that Stanford has a great covid clinic if you live here.
I’ve had many PFTs (asthma) but since I’ve had covid, they’ve been getting progressively worse. I never knew there were different types of PFTs and will get a long 2 hr one tomorrow at UC. I’ve read BO is irreversible and it looks scary as hell. Trying not to be freaked out! Now the pulmonary department is concerned about me, took long enough…Geez…BTW, I ended up with viral pneumonia with ground glass opacities 6 months after I got covid. Did anyone tell you have pneumonia or pneumonitis? It took me a very long time to feel any better, almost a year but that was with absolutely no treatment. I’m terrified to think OB has been percolating inside me for so long. I’ll keep you posted about my treatment but I’m terrified I’ll be like this for the rest of my life and I wouldn’t be surprised if it hasn’t crossed your mind, too. Let’s keep our fingers crossed that this virus from hell nightmare will soon end for us and we can get the treatment we need.
Peace and healing

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I am in SF, i am Kaiser patient.
O2s go back up with bed rest, only drop with walking. I purchased masimo, hospital grade oximeter, will add as attachment so you can see. Its better post decadron, but decadron 10 days was horrible, i couldnt wait for it to be over.
I declined to stay as my o2 were ok in laying down, but agree its been scary at home and i did end up going back to ed the following week.
I do have FTPs as baseline as i have asthma. I do have advair hfa and spiriva as baseline meds.
I am sorry, i do realize earlier post covid treatments were non existent. I did receive bebtelovimab via iv day 4 of covid, but somehow its still made to lower respiratory system.

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@jazzygirl5

Thank you for these links, Colleen. I really appreciate it. Unfortunately, nothing helps as I’m always out of breath when I walk. The PFT is tomorrow. Funny, after seeing the results of the CT scan, my UCSF pulmonologist and the nurses in the pulmonary department are now concerned. Too bad it’s taken so long and I know I’m not the one. Be well!

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@jazzygirl5, how did the pulmonary function test go? What's next for you?

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I just learned I have a “paralyzed” right diaphragm as well as residual scarring in my lungs. I was told this was reason for my SOB on exertion. But was told nothing else! Does this mean this is just the way it’s going to be for me? My “ejection fraction on echo was 35%. Feels like the ice I’m walking on is getting thinner? SOS.

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@colleenyoung

@jazzygirl5, how did the pulmonary function test go? What's next for you?

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Hi Colleen
Still waiting to see my pulmonologist. Can’t get in until 7/13 and that’s an overbook! Everyone is so busy. Thanks for checking in

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