Living with long Covid: ‘Eight months after being on a ventilator, I'm still not okay’

Many thousands of people worldwide are suffering from the lingering effects of Covid-19 – from severe fatigue and struggling to breathe to coping with memory or hair loss. Health24 spoke to a number of long haulers. This is Linda’s story.

Linda, 46

Contracted Covid-19 in December 2020

I'm not sure where or how I picked up the virus but it most likely happened in my work environment, where I had a lot of contact with people. Initially, my infection felt like normal flu, but as the days progressed it got worse. About four days later I started having breathing problems, coughing and many headaches. I was becoming non-coherent. I was losing thought and I couldn’t function. I was weak. I can’t remember how I got from my home into an ambulance and then onto a ventilator.

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I was on the ventilator for about 18 days. I didn’t know what was happening, and I have no recollection of the time I was intubated. I only remember the tears rolling down my cheeks. I kept calling for my daughter and husband but nobody was there – only the nurses running around.

And there were days where the doctor would call my family and tell them that they didn’t think I was going to make it because my vitals were going down. But through God’s grace, I managed to pull through and came off the ventilator on 31 December 2020. I was still critically ill and on oxygen. I had organ failure and I couldn’t walk or talk. I had tubes in every part of my body and if you look at my neck, you’ll notice the scars from being fed through a tube.  

Fast forward: I managed to gain my strength on my ICU bed, and with the help of the lovely nurses, I started getting mobile again. All of these things were new to me – that’s the extent to which Covid had taken me down. I couldn’t believe I ended up in such a state. I had lost almost 18 kilograms while on the ventilator.

Eventually, my vitals started to improve. My vocal cords had completely collapsed but I started to say a few words again. Eventually, they saw it fit to discharge me during the first week of January 2021. When I came home, I couldn’t manage the two steps to the bathroom for three months. My husband had to help me into the shower. I couldn’t even hold a plate because my hands were so weak. 

I had been so fit before my infection and was working in a corporate environment. Suddenly, I couldn’t remember things anymore. If my daughter or husband said something to me, I would take it in, but a few minutes later I wouldn’t remember anything and they had to repeat things. I would miss a birthday, or an important date, such as my husband’s birthday in January. I still have a lot of brain fog and short-term memory loss. 

One of my greatest fears was getting into the shower where I’d lose clumps of my hair. I had very beautiful, long, naturally curly hair. On advice from my doctor, I had it cut into a pixie style so that it would start growing again.

Linda before and after her Covid infection.

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Getting back to work

I was not fit to go back to work for a while, but when I did get back, the long-term effects of the ventilator and talking on the phone in a call centre environment further affected my vocal cords. The virus had caused nerve damage to my throat. I was gasping for breath, I still battled to walk and was still breathless. A flight of steps that would take me five minutes now took up to 40 minutes. And then, of course, there was the anxiety of being around people and worrying about getting infected again.

There’s a stigma attached to Covid when you start to reintegrate into the office environment. It is due to ignorance – people just don't know. They thought that just by associating with me, or sitting next to me, they would catch the virus. Psychologically, it was just too much for me to deal with and took its toll. I had to ask for a different skill set. I was moved three times, but still couldn’t cope.

It was a job I thought was going to take me right to retirement, but I had to resign – from a career I thoroughly enjoyed. I feel that employers are not doing enough. You go from working full-time and earning a salary to unpaid leave and suffering financially, especially with all the medical bills – and it’s not your fault at all. I’m sure employers could be more considerate by offering care packages to those affected by Covid-19. I didn’t even qualify for UIF benefits when I resigned.

I had been an excellent worker for years. The company knew my work ethic; they knew I brought discipline into the work environment. I, therefore, feel in some ways that the company has let me down. You're forgotten, and become just a statistic after going through a horrifying experience. It’s a double blow. I think that companies should consider people coming off ventilators and getting back into the work environment. You cannot put them on a telephone and expect them to give their best. It was inhumane in some ways. I’m not saying I deserve any special favour, but I believe I'm speaking up for the population through this article. 

'Being vaccinated gave me peace of mind'

The doctors themselves don’t know the turnaround time for recovery. They cannot give you the answers when it comes to long Covid. More research is, however, being done, and the experts are still in the learning phase. 

After all the anxiety and the PTSD, being vaccinated against Covid-19 gave me peace of mind. I started to feel a little bit more relaxed knowing I have something to help me fight the virus if I get it again. And after getting the second dose, I’m feeling a lot better and stronger.

I think a lot of people are misinformed by comments on social media and don't understand the research behind the vaccines. The brains behind the vaccines know what they’re doing. You’ve got to know what the World Health Organization is all about. You can’t base your decisions on emotions. You’ve got to use your intelligence. I also think people need to be strategic about how they do their research. 

Needing support

People with long Covid need support. They need love and care. They need understanding after going through a traumatic, near-death experience. The energy was draining out of me and I felt, "This is it. I’m not going to see another day." But I thank God for the doctors, nurses and healthcare workers that have been working tirelessly. And as they get to know more about Covid, they will know what to expect and become better equipped to handle patients.

I didn’t have any underlying illnesses before my Covid infection, but now I’ve even become anaemic. The virus messes you up so badly and I think being in a coma really disturbs your body. When I was shown my test results when I was rushed into the hospital, my lungs were clouded over. You couldn’t even see them. It looked like white smoke covering the area. But as the days went by, I could see that they were healing quite nicely, and I could feel it in my breathing.

My doctor recommended I take certain vitamins, take slow walks, and try to keep my mind as occupied as possible. What has helped me a great deal is blowing up balloons – it strengthens my lung capacity. It’s such a simple activity. I remember reading about it last year, so I tried it and it worked for me. But the fatigue is tough. I cannot do the things I used to do.

I lost four of my best friends as well as the doctor who was treating me. We’ve got to be strong and hope that we will get through this collectively, with the help of the vaccines. It’s been eight months since I came off the ventilator, and I am still not okay. My entire life has changed. But through God's grace, and a strong mind, I am getting by.

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