Protect us from Covid-19 – plea from a kidney patient
Farah Mulla has lived more than a decade with lupus nephritis, experiencing huge challenges with her condition and treatment, including recently contracting Covid-19. The 29-year-old from Hackney in East London is anxious that kidney patients are prioritised when it comes to being protected from the pandemic. Farah has welcomed news of the new clinical trial we’re helping to fund, with the hope that a bespoke treatment can be developed to protect kidney patients and others who are transplanted like her.
Eleven years ago, Farah had no idea what lupus was. An itchy hand and a painful thumb were the first indicators that anything was wrong. But as an 18-year-old university student she didn’t take her subsequent diagnosis – or what it could lead to – that seriously.
“I went to hospital, had blood tests done and from there I got diagnosed,” she explains. “It was a big shock, I didn’t really realise what was happening to me.”
She was unprepared for the side effects of the steroid medication, called prednisolone, that she was given to keep her inflammatory condition under control.
“I blew up like a big balloon because of the prednisolone,” she says. “I didn’t leave the house, it was horrible. I didn’t feel like myself, I didn’t look like myself. I couldn’t handle the weight, I couldn’t handle the swelling, I was really depressed.
“In my second year of university my uni friends didn’t notice me at all because they didn’t recognise me. It was so bad that my family could have walked past and they wouldn’t have recognised me. When I look back, I don’t recognise me!”
“Luckily my steroid levels came down and I started to get support from my family and friends. Three years after my diagnosis I managed to get back to myself again.”
With her condition relatively stable, Farah was able to embark on her career with the civil service, working for the Ministry of Justice.
Challenges of dialysis
Two years ago, Farah’s kidney function plummeted and it was time to prepare for dialysis. The choices ahead of her were daunting. If she chose haemodialysis (HD) she’d need to go to hospital three times a week, and her blood would be pumped out of her body and cleaned through a machine, before it was pumped in again. The alternative was daily peritoneal dialysis (PD) at home, where fluid would be passed into her abdominal cavity and pumped out, together with waste products. Each required surgery to form the openings for dialysis.
After two failed, painful operations to create a line for HD, PD was the only option, but one she ended up embracing, living as normal a life as possible.
Farah says: “I do think I’m a strong individual – I even took the PD equipment to work and to France as I didn’t want it to stop me.”
But after only three months, things took a turn for the worse, when the dialysis stopped working.
“I looked like I was eight months pregnant because all the liquid wasn’t draining out,” she says. “Then just as they were about to sort out fitting me with another tube, I got the phone call from the transplant team.”
A kidney had become available from a deceased donor and Farah was transplanted that day. Luck was on her side and the kidney started working straight away.
“Again, I had to get used to more medication - stuff that rips out your hair,” she says. “My hormones were all over the place and I was dealing with a low immune system,” she says. “There were a lot of symptoms that I didn’t realise would happen. At the time I was just thinking ‘I’ve got a transplant, I’m better now’ but there is a lot more to it.”
Fighting off infection
Just as life has got back onto a more even keel for Farah and she has been managing well with her new kidney, the Covid-19 pandemic has hit hard. She has been able to work from home, but found shielding tough, as someone at high risk.
“I think I was going crazy at one point,” she confesses. “First of all it was ‘don’t go to your local shop’, then it was ‘don’t go outside your house’ and I was terrified. I was really wary, I didn’t know what to do, how it would impact me. I knew I couldn’t go out, but there was no support.
“Luckily, I live with my mum, but she’s not well either. The council used to give us food supplies and my sister would do a quick shop for us and leave it at the front door.”
Despite taking so many precautions and rarely leaving the house, Farah caught Covid-19 in January this year. “It might have been the one time I had to go to the supermarket because we couldn’t get a delivery slot,” she says. “It wasn’t nice at all. I had to go to hospital to go on a drip at one point, because I was so dehydrated.”
It took about four weeks before she was feeling better. “I feel very blessed to have come through it. I’ve lost close family members and I know a lot of people haven’t been so lucky.”
She’s not yet had her vaccine, but is aware that currently the vaccine programme is a one-size-fits-all approach which may or may not suit people with kidney disease. The new mutations of the disease also hold an unknown risk.
Farah wants to see a bespoke treatment that protects kidney patients and others who are transplanted like her from Covid-19. “This is very important,” she says. “We’re on the at-risk list and yet there’s nothing tailored for us. I’ve been through so much in my life already, it’s scary.”
Our research is only possible with your support.
Help keep research going