Post-Covid "Organizing" Pneumonia / Long Term Complications

Posted by batessa21 @batessa21, Sep 3 3:16pm

I'm a 52 years old F – I had Covid pneumonia and was hospitalized for 2 days back in May '22 – went home with steroids for a week, felt fine initially, then started having issues with shortness of breath. Went back to my PC for a follow-up and he prescribed a 2nd round of steroids (12-day prednisone pack), along with an asthma inhaler. Within 48 hours of completing the steroids, started having SOB again, to the point it was a real chore to climb the stairs up to my bedroom. Had a follow-up with a pulmonologist on June 24th, and he sent me straight to the ER because he suspected blood clots – unfortunately he was correct (keep in mind, I had NO pain, swelling, redness in my legs, and no chest pain either, just shortness of breath – I was shocked). I spent another 6 days in the hospital and came home with blood thinners and home oxygen. After a follow-up stress test, they put me on high-dose prednisone and low-dose Bactrim (to prevent a "super-bug" infection) – so far I'm still on oxygen 24/7 (3-4 L, depending on exertion) and I started pulmonary rehab a couple of weeks ago. I can take the oxygen off for small periods of time if I am resting, but if I get up to do anything, my O2 sats drop to the low-mid 80's. Oh, not to mention, the steroids have given me a lovely case of "moon face", ugh 🙁 Just wondering if anyone else has had these types of complications after Covid pneumonia and if there is an end in site – I'm to young to feel this damn old!

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

I should also mention that apparently I was "pre-disposed" to complications because I went through chemotherapy last summer for lymphoma (currently in remission).

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I was hospitalized in November of 2021 for one week with Covid pneumonia. Was sent home with oxygen. Fortunately I was able to get rid of the oxygen after one week. Took me until May 2022 to feel an improvement in breathing. My breathing is much better now but I am still dealing with dizziness and “tightness”. Currently seeing a neurologist. Hoping you find relief and feel better soon!!

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@auntb65

I was hospitalized in November of 2021 for one week with Covid pneumonia. Was sent home with oxygen. Fortunately I was able to get rid of the oxygen after one week. Took me until May 2022 to feel an improvement in breathing. My breathing is much better now but I am still dealing with dizziness and “tightness”. Currently seeing a neurologist. Hoping you find relief and feel better soon!!

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I forgot to add-I turned 57 last month and I was very healthy until I got Covid.

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@auntb65

I forgot to add-I turned 57 last month and I was very healthy until I got Covid.

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Yes, me too, not counting the lymphoma , which was very well hidden – I had no symptoms whatsoever, felt completely normal, and it came up on a mammogram – turned out I was stage 3 and had no idea. I had a pretty easy time with chemo as well – no issues with nausea or vomiting (the anti-nausea drugs they give you are really great, even though they make you a bit headachy/sleepy). After the 6 month treatment course, I was back to normal. I've always had great BP, low cholesterol, great bloodwork on my yearly health physical for insurance, and I've always been pretty active (I'm a very busy Realtor, married with two sons and I'm always doing one thing or another). To be sitting around not able to work for the last 3 months has been driving me crazy! I hope your dizziness and tightness will ease soon – thank you for your response 🙂

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I was diagnosed July 17 as post covid pneumonia from the Er. Breathing is still an issue but the fatigue and nausea are worse. Does anyone else have this? It’s very frustrating and depressing.

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@surfdawg22

I was diagnosed July 17 as post covid pneumonia from the Er. Breathing is still an issue but the fatigue and nausea are worse. Does anyone else have this? It’s very frustrating and depressing.

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@surfdawg22, welcome. Long COVID is definitely a long haul. So frustrating and really hard to be patient with the recovery.

You'll notice that I moved your post to this existing discussion:
– Post-Covid "Organizing" Pneumonia / Long Term Complications: https://connect.mayoclinic.org/discussion/post-covid-organizing-pneumonia-long-term-complications/

I did this so you can connect with other members like @batessa21 @auntb65 and others. You might also be interested in these related discussions:
– Dealing with long COVID and COVID pneumonia: https://connect.mayoclinic.org/discussion/long-covid-covid-pneumonia/
– Has anyone had nausea with the coronavirus or post-COVID? https://connect.mayoclinic.org/discussion/coronavirus-2/
– Any tips to help recovery for a COVID Long-Hauler? https://connect.mayoclinic.org/discussion/long-hauler/

I encourage you also follow Mayo experts in the Post COVID Recovery blog https://connect.mayoclinic.org/blog/post-covid-recovery/

What helps your breathing? Were you given lung rehab or breathing exercises?

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@surfdawg22

I was diagnosed July 17 as post covid pneumonia from the Er. Breathing is still an issue but the fatigue and nausea are worse. Does anyone else have this? It’s very frustrating and depressing.

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I did not experience the fatigue or nausea. My breathing finally started feeling better in May (6 months later). I still notice a difference in my breathing. But I think that is because I pay a lot more attention to it now. My issue now is dizziness.
It is very frustrating! Because I can’t get any answers of why I’m still dealing with issues. All tests I’ve had are “normal”.
Hang in there surfdawg22. Hope you find relief and feel better soon!!

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@auntb65

I did not experience the fatigue or nausea. My breathing finally started feeling better in May (6 months later). I still notice a difference in my breathing. But I think that is because I pay a lot more attention to it now. My issue now is dizziness.
It is very frustrating! Because I can’t get any answers of why I’m still dealing with issues. All tests I’ve had are “normal”.
Hang in there surfdawg22. Hope you find relief and feel better soon!!

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Thank you and you as well. I still amazed how long the this Covid thing lasts. 

Sent from Yahoo Mail for iPad

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@surfdawg22

Thank you and you as well. I still amazed how long the this Covid thing lasts. 

Sent from Yahoo Mail for iPad

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I can’t believe I’m going on 11 months and still dealing with issues. Hoping for relief for everyone soon!!!

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@surfdawg22 @auntb65 I haven't had the nausea (fortunately), but definitely the fatigue, coughing, huffing and puffing. My pulmonologist is trying to wean me off the steroids now, which hopefully will help with the moon face and hump back, but I've really noticed my stamina is going downhill. I'm still going to do pulmonary rehab twice a week – they have me scheduled through January. I'm really hoping to be off the oxygen by Thanksgiving – it's really affected my ability to do just about anything. I hope you both find relief soon as well!

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Hoping you find relief and feel better soon!!

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