Lessons Learned

[bobbyr]

I just wanted to document some items that might come in handy for someone who gets COVID and with it, pneumonia.

1. During the first 7-10 days where I was battling high fever at night especially and trying to rest on tylenol or ibuprofen, I think that the cpap I use possibly pushed the virus deeper into my lungs. No good answer for this, as I can't sleep without the cpap...but I just thought worth noting.

2. Pneumonia might have been minimized if I had been aware of the importance of moving around early during those first 7-10 days. Of course I didn't feel like it, and instead was a complete slug...but anything that worked my lungs a little probably would have helped (including the incentive spirometer that I acquired and will hold onto). Also I lost 20 pounds in the first two weeks (applesauce and water)...my appetite returned with a vengence when fever went away (exactly when I landed in the hospital). I have since gained back 10 of those pounds. My muscles atrophied big time during the process.

3. Getting into the hospital earlier than day 10 from when I tested negative would have got me on good meds earlier, including oxygen. I went to the ER on day 7, but they sent me home because my oxygen was so/so ok. I didn't push staying in the hospital for treatment, but should have. That would have got me on Remdesivir earlier (I think opinions on that med aren't that great), but also I would have gotten on regimen of inhalers, azythromicin, vitamins, and steroid especially. I could have taken those meds at home and even got oxygen, but they really keep you on track and take care of you at the hospital.

4. The hospital never provided lung PT while I was there. The lung doctors gave me verbal recommendations and I used the incentive spirometer, but it would have been great for someone to come by for 15 minutes each day and instruct/guide/encourage me on how hard to push myself and what things to do. I think pneumonia should require hospitals provide that service. I said so on their survey form.

5. There are a bunch of little things in the hospital, that if you can figure out early, you can save yourself some trouble.
a. figure out the bed settings/angles to get maximum comfort - I am 6'1" and didn't figure it out for several days unfortunately
b. figure out how to get a shower and try to do that at least every other day...this requires covering IV areas, disconnect electrodes etc --- easiest path to success is to take advantage of when you have a good nurse on the shift
c. i had to switch oxygen lines from my nose clip to CPAP line -- i had to call the nurse until I figured out how to switch it myself...then life got easier. one lady came in when I needed it switched, I think she wasn't a nurse, ended up changing my oxygen from 4 to 2 -- so you really have to be alert and look out for yourself
d. you need sleep/rest more than anything - on steroids that can be challenging. I ended up taking melatonin which helped...my best days BY FAR were when I had rested - your hours get screwed up
e. you also need fluids, drink water as much as possible (of course)
f. food is good - gives you energy to fight the virus. hospital provided a mix that wasn't necessarily smart (like they would bring coffee at breakfast, but caffeine is a big no no with pneumonia).

6. When you get home, I didn't have much instruction other than printed material from the discharge. In retrospect, I wish i had one of those lung doctors to call with questions. My PCP is a great guy, but I really needed a lung specialist to follow up with. One of the main questions I had was how long to use the inhaler with steroid (prescribed for me when I left the hospital). The steroid makes you feel better, BUT it prolongs true improvement because it is immunity suppressant. I had the good fortune of having a nephew who is an ER doc, who gave me their recommended timeline for weaning off the inhaler (10 days full use, which is 2 puffs twice a day...then 3 days of 1 puff twice a day). As soon as I got off the inhaler I had some withdrawal of dizziness and general feeling less good....BUT I slept better and after three days off the inhaler I really was recovering. The steroids are life savers during the middle of the suffering but I was glad to stop the inhaler when I did. I also took ibuprofen the last several days (and aspirin) to regain the anti-inflammation properties that the inhaler with steroid provided.

Hope this provides some value, strictly my own views of the experience...not to be given more credence than doctors

 

[MissMolly]

Oh dear. That whole thing sounds so scary and how would one remember all this when so ill? So glad to hear you are recovering.

 

[bobbyr]

Oh dear. That whole thing sounds so scary and how would one remember all this when so ill? So glad to hear you are recovering.

Thanks! As bad as I was feeling, you have nothing but time and plenty of observation going on...

I'll add to my list...I came home with a big oxygen box that generates o2 for me at night straight into my cpap. It has been excellent and vital as the cpap sleep was dropping my o2 too low. Once my lungs are rolling again (I think this week), I'll keep it an extra few days to make sure I can sleep without it and return it.

 

[Koolau]

Thanks for sharing your experience. I was wondering how long it took to get a negative test for Covid. It sounds as if you are still recovering from the effect but I assume the Virus is "gone."? Thanks again!

 

[TimeMeasure]

Really helpful to read the detailed first-person experience. Thank you for posting this. Sometimes there’s more valuable, actionable information in anecdotal experience, than in the averaged data one comes across otherwise.

Hopefully you recover smoothly, but if you do unfortunately end up in the ranks of the “long-haulers” (heard on the news the other night that those folks with debilitating symptoms that linger for months account for 5-10% of survivors), maybe you could post that first-person experience as well. You will need encouragement from folks here... and folks here can learn from what you experience.

 

[bobbyr]

Thanks for sharing your experience. I was wondering how long it took to get a negative test for Covid. It sounds as if you are still recovering from the effect but I assume the Virus is "gone."? Thanks again!

My last test was 11/21. I tested positive. That was right around when my fever went away. They said I could move on from quarantine 14 days from 11/21 as long as no fever. Sunday was day 14, I still feel affected by the pneumonia, but hoping i continue the slow improvement.

So I would say the virus is gone based on the info they gave me. No fever, stomach issues, head ache or anything like that for 2 weeks. Just pneumonia challenges.

 

[bobbyr]

Really helpful to read the detailed first-person experience. Thank you for posting this. Sometimes there’s more valuable, actionable information in anecdotal experience, than in the averaged data one comes across otherwise.

Hopefully you recover smoothly, but if you do unfortunately end up in the ranks of the “long-haulers” (heard on the news the other night that those folks with debilitating symptoms that linger for months account for 5-10% of survivors), maybe you could post that first-person experience as well. You will need encouragement from folks here... and folks here can learn from what you experience.

Thanks, glad to post whatever is helpful. I just figured it might be interesting to folks.

 

[whatnot]

Thank you for sharing your experience. This information may be very helpful for someone who comes down with COVID-19.

 

[bobbyr]

if you take the inhaler with steroid - you are supposed to rinse your mouth out after you do the puffs. Otherwise you can get a fungus in your mouth over time. It's called "oral thrush"

I didn't know about this until I got home from the hospital and was reading up on the rx...was surprised that they didn't have me washing my mouth out at the hospital.

 

[Rianne]

Timeline

Could you post a timeline with dates? You mentioned a positive test on 11/21. Did you get a false negative in the beginning of your symptoms?

My thread about losing taste/smell...my niece had 2 negative tests while she was clearly experiencing Covid symptoms. Coughing, exhaustion, mental fog. On her third test in a week, she tested positive. This is terrible because she exposed her parents and 85 yr old grandma. Her parents have heart & lung conditions. These tests are not reliable and put the vulnerable in danger!

 

[audreyh1]

Thanks so much for sharing this valuable information!

 

[retire-early]

Just from reading this, it is no wonder that the healthcare workers are overwhelmed.

I remember thinking when my father was in the hospital how the staffing wasn't exactly "overstaffed". The nurses had multiple patients to take care of.
I always thought it was "enough staff".
And my father did not have a contagious disease.

Incentive for staying Covid-19 free!

Stay safe everyone.

 

[donheff]

I'm glad to hear you made it through and thanks for the report, It does motivate avoidance but sh*t happens, even to people who are cautious.

 

[UtahSkier]

My timeline is not as "Exciting" as bobbyr, but given the uncertainty with this disease, more information might be helpful. Avoiding pneumonia is my big concern.

11/23 - Started having a sore throat
11/24 - DW isolates somewhat

11/26 - Max extent of sore throat. Fever Peaked at 99.8. My normal temp is 97.5. In bed all day Thanksgiving. Started feeling pressure on my lungs suggesting the infection was moving into my lungs. When I get ill, the infection usually moves into my lungs quickly. So, this is generally normal for me.

11/27 - Saliva test - positive result. First noticed the loss of taste/smell.

12/2 - DW tests negative. Back in February, I installed a UV light in the central air handler and have the air circulating 24x7.

12/3 was last day of isolation according to health department. Also, smell and taste began returning.

12/8 - Generally improving ever since 11/27. The lung infection never really developed. But, the breathing constriction still exists and I am fearful of relapse. My lungs are not congested, but breathing is still restricted somewhat. So, no cardio or strenuous exercise.

DW tested negative

Supplements - Multivitamin/mineral, fish oil, zinc, Vitamin D (5K daily).

 

[sengsational]

The day 7 "go home and do nothing except get sicker" is a poor reflection on our public health response to this crisis. It's like the countries with the biggest medical industrial complex have nil early treatment recommendations, while the developing countries are offering protocols that limit severity. When the dust settles, I bet the US will be in the bottom quartile when measuring how well they protected the population, and first in the amount of money spent.

 

[Rianne]

Thanks for timeline-new protocol in our area

New protocols printed in our local newspaper this morning.

"A new COVID-19 treatment for high-risk patients coping with the illness at home is now available through Carle and OSF HealthCare’s Urbana and Danville locations.

Bamlanivimab, called “Bam” for short, is an infusion treatment intended to keep patients at higher risk for serious symptoms from becoming so sick they end up in the hospital.

The treatment is an antibody made in a lab that mimics a naturally-occurring antibody known to fight off the virus that causes COVID-19, according to OSF."

https://www.news-gazette.com/corona...7439605&utm_medium=email&utm_content=headline

 

[O2Bfree]

Supplements - Multivitamin/mineral, fish oil, zinc, Vitamin D (5K daily).

Perhaps you should add melatonin to that list, though maybe you took it only while you were very ill. There are reports out about its positive effects in Covid patients, and also many studies showing that it may have valuable anti inflammatory properties.

Glad to hear you are improving and your DW is still ok.

 

[bobbyr]

Could you post a timeline with dates? You mentioned a positive test on 11/21. Did you get a false negative in the beginning of your symptoms?

My thread about losing taste/smell...my niece had 2 negative tests while she was clearly experiencing Covid symptoms. Coughing, exhaustion, mental fog. On her third test in a week, she tested positive. This is terrible because she exposed her parents and 85 yr old grandma. Her parents have heart & lung conditions. These tests are not reliable and put the vulnerable in danger!

11/8 - exposure to covid with golf buddies
11/10 - golf friend called to say he tested positive (I was out walking with a kettle bell at the time - feeling fine)
11/11 - tested at hospital drive through in the am - 'positive (abnormal) resullt in the pm - also had scratchy throat that morning
11/12 - symptoms kicked in - cough, fever (102 at night), diahrea, never lost taste or smell but did have weird taste of cigarettes for a week or so
11/13 through 11/18 - high fever at night, felt better in the mornings (i think that's normal) - taking tylenol, ibuprofen -- this is when pneumonia took hold i think
11/18 - doctor recommended i go to ER - spent 10 hours at ER where they said i had pneumonia, but sent me home as my o2 was 94
11/21 - woke up with o2 in high 80s to 90. told wife to get ambulance, i needed o2 (I would move around and o2 drop to 86 or so) -- bad feeling
**second positive test (started 14 day quarantine period, significant as I would be in the house with my wife during the second week of this period)
11/21 through 11/27 - in hospital - on oxygen, steroid inhaler, albuterol inhaler, vitamins, azythromicin, steroid pills, melatonnin - also had a five day remdesivir treatment
11/27 discharged, wife drove me home, still very short of breath but felt like i could ride it out at home
11/28 through 12/8 - drink fluids and finally started sleeping around 12/4 once I got the steroid inhaler out of my system
12/6 - officially off quarantine
12/8 - still coughing with any exertion and very focused on rest, liquids and using the incentive spirometer to work my lungs

 

[audreyh1]

Bamlanivimab, called “Bam” for short, is an infusion treatment intended to keep patients at higher risk for serious symptoms from becoming so sick they end up in the hospital.

OK, sounds like it’s a 1 hour infusion, single treatment, within 10 days of onset of symptoms. Not for those hospitalized or requiring oxygen.
https://www.elpasotimes.com/story/n...reatment-what-monoclonal-antibody/6414971002/

 

[bobbyr]

Perhaps you should add melatonin to that list, though maybe you took it only while you were very ill. There are reports out about its positive effects in Covid patients, and also many studies showing that it may have valuable anti inflammatory properties.

Glad to hear you are improving and your DW is still ok.

melatonin was a key for me to rest (although I had to take a lot to finally sleep)

 

[bobbyr]

The day 7 "go home and do nothing except get sicker" is a poor reflection on our public health response to this crisis. It's like the countries with the biggest medical industrial complex have nil early treatment recommendations, while the developing countries are offering protocols that limit severity. When the dust settles, I bet the US will be in the bottom quartile when measuring how well they protected the population, and first in the amount of money spent.

agree...I wonder how much gaps of that type are tied to the strain on the system right now

or

just bad procedure, independent of COVID

 

[Rianne]

11/8 - exposure to covid with golf buddies
11/10 - golf friend called to say he tested positive (I was out walking with a kettle bell at the time - feeling fine)
11/11 - tested at hospital drive through in the am - 'positive (abnormal) resullt in the pm - also had scratchy throat that morning
11/12 - symptoms kicked in - cough, fever (102 at night), diahrea, never lost taste or smell but did have weird taste of cigarettes for a week or so
11/13 through 11/18 - high fever at night, felt better in the mornings (i think that's normal) - taking tylenol, ibuprofen -- this is when pneumonia took hold i think
11/18 - doctor recommended i go to ER - spent 10 hours at ER where they said i had pneumonia, but sent me home as my o2 was 94
11/21 - woke up with o2 in high 80s to 90. told wife to get ambulance, i needed o2 (I would move around and o2 drop to 86 or so) -- bad feeling
11/21 through 11/27 - in hospital - on oxygen, steroid inhaler, albuterol inhaler, vitamins, azythromicin, steroid pills, melatonnin - also had a five day remdesivir treatment
11/27 discharged, wife drove me home, still very short of breath but felt like i could ride it out at home
11/28 through today - drink fluids and finally started sleeping around 12/4 once I got the steroid inhaler out of my system
12/8 - still coughing with any exertion and very focused on rest, liquids and using the incentive spirometer to work my lungs

You experienced what I fear. Very sorry to read what Covid can do to a healthy person and the long recovery. A month and slowly getting better. Really appreciate your detail.
-For 7 days it acted like a bad flu. Then, Bam. Finally, our community figured this out, getting treatment with synthetic antibodies before that 8-10 day emergency.

 

[pacergal]

OP--
Thank you for sharing your experience. So glad you are slowly improving, rest and keep up with the breathing exercises!

 

[UtahSkier]

Perhaps you should add melatonin to that list, .

I have problems with melatonin. After a few days, it stops promoting sleep and starts interfering with sleep. Last nite was nite 3 of my taking melatonin. First 2 nights were fine. Last night, I was wide awake after 3.5 hours.

It's always like this for me.

 

[bobbyr]

You experienced what I fear. Very sorry to read what Covid can do to a healthy person and the long recovery. A month and slowly getting better. Really appreciate your detail.
-For 7 days it acted like a bad flu. Then, Bam. Finally, our community figured this out, getting treatment with synthetic antibodies before that 8-10 day emergency.

For what it's worth, I think my CPAP machine played a part in the downward spiral (no medical proof just intuition).

Also, I have allergies and was always prone to getting bronchitis when I was younger.