A woman is in desperate need of help for a life-limiting condition after her kidney donor dropped out 24 hours before a planned operation. Diana Isajeva Randhawa is now issuing another urgent plea for a donor to come forward after being given just months to live.
Diana, from Cardiff, was diagnosed with an aggressive form of lupus aged 19 and underwent periodic chemotherapy for it, but in 2020 she was told her kidneys had started to fail. She urgently needed a donor - and at that point the NHS waiting list had been suspended, so she had to advertise her donor search on social media and even using the back window of her car.
After Diana's plea was shared by WalesOnline, 30 potential donors volunteered to help. Diana said it was "overwhelming, and actually really amazing," with support coming in from across the UK.
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"Unfortunately," she said, "a lot of people were not a match, or a lot found out they had health issues. Due to the fact that we were in the midst of the Covid pandemic, the testing of the donors took an unusually long time. Usually it takes at least three months, but the testing of my potential donors took over two years because of the pandemic."
But of those 30, one was a match, Diana explained: "Luckily I was told last summer that a donor was found thanks to the WalesOnline article and I was being prepared for the surgery. The surgery kept getting delayed because they didn’t have a free room in the operating theatre. It was supposed to happen at the end of the summer but was getting delayed and delayed and delayed."
Eventually, the surgery was pencilled in for November. To prepare, Diana started chemotherapy, because the donor was a different blood type and chemotherapy would weaken her immune system to the point at which it would accept a kidney from someone who wasn't type O+ like her.
But just 24 hours before the operation, the donor "just changed their mind and disappeared." Diana said it was "a big shock for everybody," and claims the NHS spent £70,000 preparing for the operation.
"It shows that there is no pressure on a donor," Diana said. "At any point in time they can withdraw their consent… that’s why I am back and looking for a donor again."
Not only is Diana now back searching for a donor after two years - her condition is classed as life-limiting. She explained: "My kidney function is very low at the moment, below 10% for both kidneys.
"They're saying it's a month or two. It's end-of-life care. Without the treatment, one would die... I'm resuming treatment and they're trying their best."
Diana has also started dialysis treatment since we last spoke to her - which she described in 2021 as "the one thing I have avoided." She explained the process: "I had to go through surgery to have a dialysis line put in my heart, and also I had to go through a lot of plasma exchanges and some chemotherapy treatments to prepare myself for the transplant.
"That was very hard on my body. I started having chronic infections and other things. It really weakened my heart further - I had heart issues before but it weakened it further. At the moment we are trying to deal with my health issues regarding the heart and a low immune system.
"My immune system would have slowly rebuilt itself after the transplant, but that didn't happen and that really messed everything up." Diana is now on the NHS waiting list, but has been told the wait could be three years. When the prognosis from doctors is one or two months, this won't get her the help she needs.
The one silver lining is that Diana and her partner Sandeep got married in summer 2022. Knowing that her health could improve after a transplant, but that it would take some time to recover, the couple thought: "Why not now?"
Diana remembered: "We had people come from all over the world, it was amazing. Obviously we had to make sure that people tested for Covid before they came but it was a really really lovely day, honestly. I was really tired, I couldn’t even feel my body by the end of it because I was so exhausted but it was the happiest day of my life."
It's Kidney Awareness Day on March 9, and as well as her own request for a donor, Diana wants to remind people to share their organ donation plans with their loved ones. She explained that although opt-out organ donation came into force in Wales in 2015, families of people who die can still say 'no' to donation on their relatives' behalf.
It's crucial, then, that you tell your family what your wishes are - and you can still do so by formally registering your decision.
If you think you could be a potential match for Diana, you can email her via kidney4diana@gmail.com. You can also follow her search and help by sharing her posts on Twitter.
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