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The unbearable loneliness of Covid-19

As I lay prone on the operating table, waiting for a team of doctors to slice into me, my mom was in another hospital not 2km away. She had been admitted after suffering breathing difficulties following a positive Covid-19 test result.

It was weeks since we had last seen her, weeks since we heard her voice.

I was the last person to speak to her. Moments before she was placed on the ventilator, mom sent a message to our family WhatsApp group: "Ventilator now".

In my own selfish panic, I called her and asked if it was really necessary for her to be ventilated. She passed the phone to the doctor. Her saturation levels had worsened, despite oxygen therapy. This was now serious. I asked the doctor how we would be able to monitor mom's progress. She was unsure herself and checked with a nurse who said we should call the ward.

In my own hospital bed, I was about to undergo an emergency procedure. Before I could be admitted, I had to take a Covid-19 test - the results returned positive.

The doctor, next to my mom's bed, handed the phone back to her. "I love you," I told her.

She paused and whispered: "I love you too."

When you have Covid-19, doctors are fearful of you - mostly with reason

The agitated doctor hit the elevator's down button furiously.

"Why did you bring the file out? It's now contaminated," she snapped.

The file in question was at the foot of my bed. I was being wheeled out of a ward and into the operating room by an anaesthesiologist and a theatre nurse. Approaching the lifts in the lobby, the doctor was studying a file in the lobby. She took it upon herself to chastise the nurse and anaesthesiologist for entering the ward I had been in.

"You are supposed to wait here for the sisters to bring her out," she snapped and then continued to list various other offences. In the litany of offences committed, it was my presence I felt that was the most offensive thing.  

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I had first tested positive for Covid-19 a month before my operation. A test I had taken in between returned a "not detected" result and now I tested positive again. I was therefore being treated as a PUI - a person under investigation.

I no longer had Covid-19 symptoms and had long surpassed the two-week recovery period - as the World Health Organisation points out in its guidelines and research, the latest positive result had likely just reflected remnants of (dead) virus cells still in my body and I was almost certainly no longer infectious.

But the hospital was wary - as it should be.

I wouldn't even be receiving a general anaesthetic, but rather a spinal anaesthetic that would numb the bottom half of my body. The anaesthesiologist said they were wary of inflicting any further lung damage following my Covid-19 experience. I suspected, however, the hospital would rather not risk the theatre staff being infected by me taking off my mask.

My anxiety mounted as I was shifted onto the table. The anaesthesiologist promised to give me something to calm me down while the surgeon tried to distract me with conversation. "What a coincidence," she said.

The anaesthesiologist in her last procedure had actually been on duty during my mom's recent bypass surgery. As she continued to ask about my mom, the tears that had welled up in my eyes spilled over.

The complicated search for mom's doctor

In the empty silence of the days that followed my last phone conversation with my mom before she was ventilated, I held her words precious.   

On most mornings, we began our day by dialling the hospital, asking for the Covid critical care unit (CCU). Sometimes the call would go unanswered and we would be transferred back to the operator, only to ask for the ward again. Then we depended on the whim of the nurses to let us know how mom was doing.

Some days, the nurses were affable, curious about us - the family of the patient they were caring for. On those occasions, they happily shared information about mom's condition.

But on other days, they were impatient, offering only an assurance that mom was stable.

As frustrated as we were, we had to dig deep to find understanding for these nurses who must navigate their own safety while caring for people who are gravely ill and infectious. But for families sitting at home with no access to the hospital or the medical professionals treating their loved ones, the silence only feeds anxiety.

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One morning, an audibly irritated nurse asked us to redirect our questions to mom's doctor. We had no contact with the doctor except through a physician friend of my brother who contacted the specialist leading mom's care on our behalf. But he too couldn't reach her doctor regularly.

My sister renewed her search for the contact details of our mom's doctor. After calling the rooms of several other specialists based at the same hospital, one sympathetic receptionist shared the mobile number of my mother's doctor.  

When we contacted her, the doctor was apologetic for not contacting us herself. She was overwhelmed with the number of patients in her care, she said. We were just relieved to have direct contact with her. So over WhatsApp, once a day, we would ask the doctor for notes on mom's progress.

For weeks, nothing much changed. Even on the ventilator, mom's saturation levels had not improved.

'If I were you, I would sit and pray for a miracle'

My family's Covid-19 nightmare was unrelenting. In all, more than 12 people in my extended family tested positive simultaneously. At one time, we had four relatives in hospital, two on ventilators. So when one day, a power outage left our home in the dark for more than 24 hours, the outage appeared to us a profound pronouncement on our mood, and our outlook.

When our phones lost charge, we dropped them off at my aunt's home nearby to charge. When we collected the devices and turned them on again we were greeted by a message from mom's doctor.  

"We will be putting her on lung support. It's called Ecmo - extracorporeal membrane oxygenation. It's to try to get the lungs to heal again and to provide oxygen."

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While we scrambled to find doctor friends who could decipher that message for us, the landline rang. I answered. It was a nurse, phoning on behalf of the cardiothoracic surgeon. "I am calling in regard to Mrs Patel, how are you related to her?" she wanted to know.   

My instinct was to slam down the phone. I would not be the person to bear bad news to my family. Mom was in the theatre for bypass surgery. The procedure would take hours. This was a call to inform us that she was already in the operating theatre.

"If I were you, I would sit and pray for a miracle," the nurse said. She promised that someone, likely the surgeon, would call us when the procedure was done.

We sat and prayed that afternoon as we had every day since we had last spoken to her. But this time, our prayers were more fervent, our worry more acute.

The lights were still out.

The neighbours had hired a generator and the air filled with its noise. We tried to run a plug into their generator but stopped when we saw sparks flying out of a socket. We called the Covid-CCU ward again, asking if mom was out of surgery. Confused, the nurse on the line said there was no such patient registered in that ward.

It was now 20:00. We had last received a message from mom's physician at 15:00 saying the procedure was going well. My sister decided to defy regulations and go to the hospital.

At the reception, a nurse from the Covid unit spoke to her. The confusion about where exactly my mom was appeared to be a misunderstanding. It had been hours since my mom was back in the ward. The surgery was successful and she was now on Ecmo therapy.

We would later find out that the Ecmo machine is similar to the heart-lung bypass machine used in open-heart surgery. In mom's case, it was used to pump and oxygenate her blood outside the body, allowing her severely damaged lungs to rest.

We sit alone at home, anticipating grief  

Hospitals have been forced to take extraordinary measures to protect their staff. Where there would have been the family and friends of patients filling the corridors, gathering with love and care, there is now just silence. We sit alone at home, our anxiety mounting and anticipating grief.

It would be another two weeks before we spoke to mom again, when she was finally taken off a ventilator. That silence was punctuated by reminders from her doctor that she was gravely ill, but assurances too that they were hopeful. It was that hope, however, that would whisper through the silence of our worst fears. She is now out of the critical care unit, and also off Ecmo - but she is reliant on other forms of oxygen therapy. It is hope that won.

This past weekend, she returned home.  

Back in my own hospital ward after a successful surgery, I waited for sensation to return to my legs. From my bed, I watched a nurse don protective gear outside my door. A young doctor standing near her played the Nkosazana Dlamini-Zuma zol song on her phone. "When people zol, they put saliva on a paper and then they share that zol…"

The nurse danced, her face shield bobbing in tune to the beat.

I smiled.

And in those moments, even in a hospital ward where fear stalks patients and staff alike, there was something lighter, yet infinitely stronger holding us together, a shared experience, something a lot like resilience.

Khadija Patel pushes words on street corners. She is a freelance journalist and most recently worked as the editor-in-chief of the Mail & Guardian. This story was produced by the Bhekisisa Centre for Health Journalism. Subscribe to the newsletter.

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