Post COVID pneumonia on oxygen at home. How long does O2 weaning take?

@susie333 I can hear the concern for your daughter in this post. You said she was sent home on 3L. Can you clarify?

I am sure her elevated heartrate is of serious concern for you all. What guidance was given to her upon discharge other than to do a follow-up with a Pulmonologist at the end of the month?

Yes it was 3L.. She checks in with her PCP weekly until she has her first visit with local pulmonologist (Jan 31). The PCP has been guiding her in trying the weaning. He seems concerned of higher heart rate, but my daughter’s PO with 02 even at 1.5Lis 98%…… so she tries to go without but her heart rate continues in the 100s with or without 02. So I presume she she stay at at least 1.5L til her heart rate goes down, even with hi PO? I encouraged her to contact her PCP today for better understanding/clarification. Thanks for checking in!

Hi Susie, I'm tagging fellow members @ineedanswers38 @darypary @erichess @sueinmn who I believe have some experience with being on oxygen while recovering from COVID.

Your daughter may find the tips shared in this discussion helpful
- Deep Breathing to Stop a COVID Crash https://connect.mayoclinic.org/discussion/deep-breathing-to-stop-a-covid-crash/

Susie, was your daughter able to take with her PCP and get clarification about her heart rate and oxygen levels?

Well the only guidance by the PCP has been if PO got below 93% on room air to then go to 02 at 1L. Her heart rate seems to be getting better at rest too….70-80s upon waking up and not using 02 at nite. Her am sats are hi 90s! Glad she is figuring it out. I know she is resting as she is keeping busy with jigsaw puzzles in between chores around the house…. Like laundry and cleaning bathroom! Today I went to my pulmonologist to review my recent sleep study. Outside of my need for Cpap, I was encouraged to hear that folks with pulmonary fibrosis can get off of the oxygen…. Esp since she’s young (37)!

I was discharged from hospital after 12 days Oct 27, 2021, when I had my second brutal bout with COVID despite full vaccination. I am still on oxygen 24/7 (2liters and sometimes 3). Without this oxygen, my sats drop to 89 or 90%. This is an improvement. For the first month and a half, it would drop to 84%, but I have long COVID, with many other symptoms (crushing fatigue, destroyed circadian rhythms, brain fog, loss of balance, blurred vision, etc. ). So there is hope, but it’s three steps forward and two steps back (a net gain of one step!!!) It’s a very long and slow recovery. Luckily, I am 65 and thus closer to the end than to the beginning. My home is not in this world. If we offer up our sufferings for God to use where He will, everything is easier to bear.

Thank you for your encouraging words. That’s how I feel……. Just wish the antibodies were more available! Believe it or not my daughter hasn’t used her 02 in 3 days and her heart rate has been below 90. She has first virtual appt with pulmonologist Monday and then first real appt feb 11th. The ctcans while in hosp showed the pulmonary fibrosis, so I hope she follows up with the lung dr. Praying in time u can wean from the 02 also. At least they are more portable and easier to do things. Are u participating in a pulmonary rehab program? Thanks again.

I'm so happy for your daughter she was able to go off of oxygen. I too have been on oxygen 24/7 since Sept 2021 after having Covid. My primary Dr had me get an xray about a week ago and scarring was still seen. I have an appt with my Pulmonary Dr this week but my question to you is, if your daughter was diagnosed with fibrosis how was she able to go off of oxygen? Can you give me more information since I didn't think lungs could heal and I'm looking for hope. Thanks!

my daughter finally had virtual appt with pulmonologist 2 weeks ago. they sd they wont do any more ct scans til next fall to see if indeed it's fibrosis. last week she had the pulmonary function tests with results showing something with diffusion, and she responded better after using nebulizer. she has already returned back to work.... 2 days a week as a hygienist. this coming week she'll have 5-6 pts each day. I can tell (over phone) she still has occassional brain fog. she got pretty pooped after outside yard work yesterday. hoping she will take it easy today before work tomorrow. I think she will figure out more what's going on when she catches a cold from her children. she was a premie at birth and was on a ventilator for a week.... so that could possibly be a contributing factor.

there is always HOPE!!! I'm now 67 with multiple health issues but finally have energy. my daughter got the ok to fly so I'm excited for their visit next month!

That's great! I'm so happy to hear she's doing that well. Being tired vs oxygen dropping to low is something different so it sounds as if she's healing. The Cardiologist who saw me and did an echo & stress test after I got out of the hospital and rehab said to keep moving. His wife had cancer and covid so she was on oxygen and barely able to walk when she got home, but she got well from both. I'm sure he gave her guidance, but isn't that amazing!

i got covid pneumonia in june 2021. i have been on oxygen since. weaning is personal. i got a portable oxygen machine (inogen) to take places. i use base unit at home. My experience has been that others thought i should be off oxygen because of their own experiences with bacteria pneumonia. but covid pneumonia is nothing like other pneumonias. the lungs are severely damaged and looking at pulse ox rates when walking ( like in a true 6 minute test) is the only way to see what someone can tolerate without oxygen. dont rush it. i actually found sleeping with oxygen very helpful to wake up refreshed. i use it with all naps. if your daughter is not above 95 when doing chores she should be on oxygen-