Physician Outlook

Recovering from COVID-19


If you have been sent home on Oxygen due to illness, have you and the doctors discussed a way to get you back to normal? This story about one woman's experience surviving COVID-19 and weaning off of oxygen may help others. She spent 7 days in the ICU to be sent home weak and on 8L of oxygen, but after weeks of hard work, she overcame the illness and is almost back to normal.

In April of 2021, I started to feel ill, but then my husband tested positive for COVID-19 and we figured that I probably had it too. That is when the worrying started as I have Multiple Sclerosis and a compromised immune system from my bi-annual infusions. You might ask why I didn't run to get the vaccine, and the answer is pretty simple. The doctors didn't think it would work! I had a small window just before my infusions that we stood a chance for my body to create antibodies and we weren't there yet. You see, COVID-19 got me before I had a chance to go out and get a vaccine to stop it. After 7 days in the ICU fighting to survive, I was sent home on oxygen at 8L and told to do a series of exercises to work on my legs and my lungs. It has been a long journey and now, almost 3 months later, I am off the oxygen and almost back to normal.

Let me share my thoughts on what worked and what didn't work as well. Feel free to share it with other folks struggling with post-COVID recovery. My solution will not work for everyone, but it is certainly something that everyone can talk to their doctors about. Having backup plans to backup plans makes all the difference. I noticed that as my care was passed from group to group, first the ICU, then the home health staff, then my PCP, there was a lack of coordinating care to help me get back to normal. So what you read here is a combination of advice from multiple providers as well as what I tested on my own.

I came home from the ICU on oxygen 24/7 at a rate of 8L. There were few instructions on how to wean off of oxygen. The nurses said that my body would need it to heal my lungs, the doctors agreed with that sentiment as well. I was provided with a machine to help train my lungs and instructed to use that daily! I went from being able to pull 250ml of air into my lungs to be able to pull almost 2,500ml of air over a 3 week period. Still, I was on the oxygen, though I had lowered it to 4L because my nose was constantly cracking and bleeding even with the humidifier.

By week 4 the nurses and I were talking about possible ways to reduce the oxygen and how to go off of it completely. Many of the places that I wanted to go would have required 2-4 tanks of oxygen just for the car trip! Living in farm country is great until you need medical care, then everything is far, far away. The home health staff and I discussed tactics of going off cold turkey for a few hours a day or lowering the output by .5L every 3 days. Let me explain what did and didn't work.

Didn't Work:

  • Going off of it for 15-minute intervals, worked for 1x per day, but the 2nd or 3rd time I tried to off of the oxygen, the rate fell and took a while to come back up. My little finger blood ox reader was beeping like a maniac!

  • Going down .5L every 3 days wasn't super reliable. It worked towards the end, but in the beginning, 3 days wasn't enough. For the first 2 weeks, I put 6 days between each .5L drop.

  • Switching from the nasal cannula to a mask and vice versa. It was only after Family and Friends pointed out that the reason the hospital was able to send me home with a mask was that I was on 8L of oxygen. The mask isn't safe below that because the air exchange made it so that there was too much CO2. I am sure the hospital staff told me that too, but I was way too sick to remember and we (neither them nor I) wrote it down.

  • Trying to do stuff on hot humid days is still a total bust. It gets hard to breath, I get exhausted, and even with dragging around the oxygen tank, it just doubles down on the exhaustion. Just don't do it yet! Even now (July 15) months after I first got sick, the hot and humid days are too much for my lungs.

  • Eating a full meal! When your belly is full, it feels like (I don't know if there really is) a lot less room for your lungs. It is especially hard if you need to lay down. So just eat several small meals at first until you know that you can manage a big meal.

Worked:

  • Practicing with the Voldyne (lung exercise machine) at least 6x per day! I was told that every 2 hours I should pick up the machine and take 5 breaths. That would exercise my lungs and that is exactly how I started. I slid the little target gauges so that I had a goal and I plugged away. Once I was able to pull in 1,500L of air, I switched from exercising just 5 breaths to breaths until failure. I lowered my goal to 1,000 and kept pulling in the big breaths until I couldn't hit that 1,000 anymore. It hurt like crazy for sure, but eventually, I worked up to 10 breaths, and then I raised the bar just a little.

  • Choosing the time of day to go off the oxygen for 15 minutes made all the difference. I started going with 15 minutes first thing in the morning. I was able to make my breakfast without fighting with the hose and was able to get dressed without taking it on and off. Then I monitored my finger O2 Meter throughout the day to see how things were going. By day 3 of that, I was stable enough to also start lowering the O2 Liter output by a little. Once I got it to 2L, I started taking longer off of the oxygen in the morning. The goal was to add 5 minutes to the 15-minute starting point each day.

  • Putting the Oxygen back on when I am trying to do something strenuous. This was all the hubby's idea! At first, I was trying to do things like normal and I would be out of breath and gaspy. Even now, I am still at a point where if I try to do too much activity, I can't keep up with my oxygen. So the solution to me wanting to do a little more is to keep the O2 with me when I am going to do something. The other day I climbed 3 flights of stairs to go to breakfast service at the local Masonic Lodge. It was not graceful and I was huffing and puffing when I got to the top (with 3 breaks along the way). Once I reached the top, my husband pulled out the oxygen bottle and nose canula and I sat for a few hours with the oxygen on. I felt 100% better at the end of that and did ok going down the stairs.

  • Try to be easy on yourself. I fail at this! My physical therapist tells me when I need to take a break because I would push to the point of collapse. Not highly recommended for recovery. Thankfully I have a great care team between home health staff and family and they have helped me see where the breaking point is. This goes for recovery on the O2 and on the weakness.

  • Eating several small meals has helped tremendously. It has both made the acid reflux better and made breathing easier. Also, eating slower so that I can breathe between bites and refrain from aspirating on food.

Hopefully, this message helps others! It has been quite the journey with COVID-19 and I know that medical professionals are on the journey too. As always, consult your own medical team before jumping into any treatment! What works for me may not work for anyone else, but that doesn't mean you shouldn't talk to your medical team about it being a possible option. 

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