Written by Roxanne Bruce, MBA, DrBA

Picture by Ai Subarasiki

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.

After months of hard work, it appeared that I was getting better. Better to the point where I no longer needed the oxygen and could go back to life as normal. Well, as normal a life as someone with a chronic illness can get.

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 coordinated 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 a few instructions on how to wean off oxygen. The nurses said that my body would need it to heal my lungs, and 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 being 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 go off oxygen, my O2 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 they nor I) wrote it down.

Trying to do stuff on hot, humid days is still a total bust. It gets hard to breathe, 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 in July, months after I first got sick, the hot and humid days were 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 lie down. So just eat several small meals at first until you know that you can manage a big meal.