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 Riana's story.
Contracted Covid-19 in May 2021.
I tested positive for the Delta virus at the end of May last year. I had the typical flu symptoms: a runny nose, cough, chest pain, and around the second day, I lost my sense of smell and taste. I can remember the first three days of being at home. After that, everything is a big haze.
My sats (blood oxygen levels) were very low at that stage. My husband took me to Netcare Milpark hospital where I was hospitalised. I remember being in the ICU with many patients who were on machines. But it’s all pieces in my mind that come and go.
My lungs were so damaged that they decided to put me on the Ecmo machine. It’s what they use for open-heart surgery. It pumps your blood out, oxygenates it, and sends it back into your body. It’s just for your lungs to take a rest. But if you read up about Ecmo online, you don’t read a lot of nice things. A lot of people I personally know have died on Ecmo, so I’m thankful that I never knew I was on it at the time because they kept me in an induced coma.
I also struggled with the ventilator being in my mouth – I kept pulling it out. At one point, they had to restrain me and fastened my hands to the bed so that I stopped pulling at it.
During my hospital stay, I had frightening, vivid dreams that felt so real. I dreamt that my mother-in-law died next to me, and on another occasion, I dreamt that I was looking down at my own dead body and how the hospital staff were wrapping me in plastic.
When I regained consciousness, I received physiotherapy every day. I had to learn how to walk and how to swallow – all without seeing my family. A couple of times the doctors thought they had lost me – my heart stopped twice and they had to resuscitate me. Fortunately, in those critical stages, they allowed my husband and three children to visit me.
I must give credit to Dr Scholl, Dr Sussman, and Dr Bhamjee. They were brilliant. They helped pull me through. Eventually, my oxygen levels picked up and they removed the Ecmo. I was fighting for my health with all I had, and two months later, I was finally allowed to go home.
On the road to recovery
I was discharged with oxygen and am currently still fighting the long haul Covid symptoms. My senses of taste and smell are not 100% back to normal. All bad smells smell like sewage. If my big dogs are in the house and fart, for example, it smells the same as sewage.
My sense of taste is also not normal at this stage. I used to be a big Coke lover. The first thing I asked my husband to bring me when I woke up in hospital was Coke. But when I tasted it, I couldn’t drink it. It had a horrible taste. Fanta Orange and Schweppes Granadilla Twist tasted the way they used to before my Covid infection, but not Coke.
Other long Covid symptoms
I lost my job throughout this whole process, so I’m at home now, which I think is making it much easier for me because there are many things I’m struggling with that weren't a problem before. Control over my bladder is one of them. For two months, I had a catheter in me, so the muscle that controls your bladder stopped working properly. So on numerous occasions, I wet myself or my bed because I couldn’t get to the toilet in time. And being in a work environment without proper bladder control would be a serious problem.
I also have to take oxygen many times a day, so I cannot move around freely. My son plays rugby, but I can't go to his matches anymore. The bottles of oxygen don't last very long.
I also got nerve damage from the Ecmo. I have no feeling in my legs, from just above my knee to my thigh area and I often get pins and needles when I lie or sleep on my side.
My body gets very sore. Opening and closing my hands actually causes pain. My knuckles and joints, as well as my lower back, are all sore. I also suffer from fatigue. While some of the symptoms have worsened, there are fortunately some that have improved. The doctor gave me tablets for the joint pains and bladder control, which help, and the fatigue only hits me now and again; it’s not as constant as it used to be.
And then there was the hair loss. I was completely bald at one stage. I had to cut my hair off and I looked like I was on chemotherapy. That was a very emotional thing. I’ve always had short hair, but seeing all the hair on the shower floor was terrible. Luckily, a vitamin D supplement and coconut oil are helping my hair grow back slowly.
Brain fog and memory issues
Brain fog is another symptom I struggle with. Sometimes I’ll try to say something and can't find the word I want to use. The other day I was looking for the Mitchum deodorant stick and I couldn’t find the word. I also tend to swap my words around. This is bothering me a lot.
I used to have a very good memory. I could for instance remember my husband and children’s cellphone numbers. And now if you tell me a number, I won't remember it. I have to write it down.
I also have sleep apnea. The last time I went for a test where they observed my sleeping pattern, they picked up that there were certain times I would stop breathing during the night. They said it wasn’t severe enough to be on a CPAP machine, but I suspect that once I’m off the oxygen, I will need CPAP.
I’ve started seeing a psychiatrist. I felt guilty because I survived. Every time I heard of someone who passed away, I thought, “Why did God save me?” It was really triggering me and I had to get help. People who survive something traumatic like this need to get help. At first, I thought I was fine and that I just needed to get home to my family, but when I got home and was alone, these feelings hit me.
I realised that there aren’t many support groups for Covid survivors who were on ventilators. I’ve looked online and only found one international group.
Doctors have told me that I can expect to see improvements six to 12 months after my infection, but I’m already eight months in, and I don’t know how much better I'll be in a year’s time. But I’m optimistic and I'll fight.
I’m sharing my story because even if I make a difference in only one person’s life, it will be worth it. Personally, I think God saved me for a reason, and I believe that that will help other people realise that there is a God and that miracles do happen. My work here is not done yet. I had many people praying for me and I think that also helped me survive Covid.
*Many people suffer from the long-term effects of Covid-19, even many months later. If you are one of those people, and wish to share your experience, let us know, and your story can be told in our Living with long Covid series. You are not alone. E-mail your stories to firstname.lastname@example.org
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