Kidney disease diagnosis blow to mums of five donation hopes
A mum of five from Cheadle in Cheshire is holding out hope for a kidney transplant after her potential donor – another mum of five – couldn’t donate her kidney when it was discovered she also had kidney disease.
“I was heartbroken and felt like I had let Paula down, despite my own diagnosis,” said Kirsty Vaughan, 47, a business owner from Tywyn in Gwynedd, who first met friend Paula Carberry at antenatal classes 26 years ago.
Diagnosis after fifth child
Pensions and investments adviser Paula, 52, was first diagnosed with chronic kidney disease after the birth of her fifth child. She initially didn’t notice any significant problems, her kidneys were still working at about 40% of their function. However, five years on in 2016, things started to deteriorate.
“I had been referred to the renal department at Manchester Royal Infirmary and I wasn’t coping well with having to juggle everything and not feeling great,” explains Paula, who is mum to Zara (26), Aisha (24), Joseph (13), Daniel (12) and Eva (10) – as well as Nanna to Millie (4) and Gracie (1).
“Having to face getting a plan in place with what treatment I wanted in future, going to all these appointments, going on the transplant list, all that took its toll. I think I had a bit of a breakdown, but I didn’t see it at the time because I was trying to cope with everything that was going on.”
Paula eventually left her job. “It was a really hard decision after 14 years, but I had to put myself and my family first.”
Dreaming of of a successful transplant
Having a successful transplant is the dream, but is far from straightforward. Family members have offered to donate their kidney, but they weren’t a match. Tests showed that Paula’s antibody levels were very high, and doctors explained that they would cause her to reject 99% of kidneys without careful matching. This was likely to be due to multiple pregnancies and receiving blood transfusions after giving birth. She was told she only had a 20% chance of getting a match after being on the waiting list for five years.
Despite this, Paula didn’t widely advertise her difficulties, not even to her closest friends. Kirsty and Paula had been very close when their older children grew up together and had kept in touch even when Paula and family moved to the Shetland Isles, seeing each other occasionally. Then one weekend during a rare girls’ night out in 2019 Paula explained to Kirsty why she had to take it easy.
“She hadn’t told me anything before that, she’d kept it to herself,” Kirsty recalls. “She explained how her kidneys were failing and how she was on the transplant list. She had her phone with her and she said at any time she could get a phone call to say a donor kidney was available, and then I realised just how serious it was. I came home thinking, what a massive thing for her to go through.
“I thought she’s got a grandchild, she had another on the way. I thought if this was me, she’ll want to go out, to do things with her children, and be an active grandma. She’d been a massive friend for a very very long time, so I thought I could help her and offered to donate my kidney.”
Starting on dialysis helped Paula feel better. She was able to get back into work, first at a local opticians, then moving onto work for an investment and pension company.
“I wanted something to focus on, rather than sitting and waiting and feeling like everything’s on hold.”
Dialysing at home each night has normalised things for Paula’s family, with her husband and the younger children helping to carry the equipment and heavy containers of dialysis solution up to her bedroom from the shed.
“The children accept it as part of our lives but have started to get more curious. Obviously it does affect them as I haven’t got the energy to do things I’d like to do, so they do see Mummy having a lie down because I need to rest. That puts extra pressure on my husband as he has to supervise and do most of the stuff around the house.”
The hope of being a match
Astonished that her friend wanted to help her in this way, Paula was careful to keep their hopes in check. However, the pair couldn’t help but get excited when they were shown to be a good match. Lockdown created frustrating delays to the rigorous tests that Kirsty had to go through which took 14 months. They gradually seemed to be getting closer to their goal – until one final test.
In a devastating blow, it was shown that Kirsty was actually in the early stages of a kidney disease herself called IgA nephropathy, and wouldn’t be able to donate.
“I’m still very disappointed I can't donate to Paula”, says Kirsty. “I'm doing OK. I’ve made a few lifestyle changes and am going for regular check ups. My kidney disease was silent with no known symptoms. If I hadn’t had the biopsy as part of my tests for being a donor I wouldn't have known until symptoms presented themselves and irreversible damage could have been done. It turns out Paula could have saved me instead of the other way round.”
“It was disappointing and I was worried for Kirsty,” Paula admits. “But hopefully they’ve caught it early so her problems can be managed with check ups and monitoring.”
The need to transform treatments
In a surprising twist, Paula recently received a call out of the blue to say a kidney had become available from a deceased donor. She dashed to the hospital to prepare for a transplant but sadly was told a few hours later that the kidney wasn’t good enough.
“Getting the call was such a shock, it was my first call in five years,” she says. “For the operation not to go ahead was disappointing but I’m trying to think of it as a trial run, it’s given me a little bit of hope.
“I’m trying not to think about being on dialysis for the rest of my life. You have to have hope and carry on as best you can.”
Both women are firm supporters of Kidney Research UK and its mission to transform treatments for kidney patients
Paula said: “I hope research will improve treatment and outcomes for people with kidney disease like myself and Kirsty.”
Kirsty added: “It’s so important for research to help people like Paula with complex antibodies, as the chance of a match and a transplant becoming available is so slim.”
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