How your kidney could help save this Preston nurse's life

She is surviving off less than a quarter of kidney function and is so vulnerable that she fears she might not live long enough to see her 12-year-old "miracle" daughter grow up.

By Laura Longworth
Friday, 5th June 2020, 7:00 am
Joanne Davies from Walmer Bridge, Preston, suffers with chronic kidney disease and is appealing for people to be tested for kidney donation.
Joanne Davies from Walmer Bridge, Preston, suffers with chronic kidney disease and is appealing for people to be tested for kidney donation.

Having no-one in her family who is able to offer her a kidney, Preston nurse Joanne Davies is appealing to the public to be tested for suitability and consider donating.

The mum-of-one, who lives in Walmer Bridge, has only one kidney and requires a treatment called dialysis to help it to function. Dialysis is a procedure to remove waste products and excess fluid from the blood when the kidneys stop working properly. It involves diverting blood to a machine to be cleaned or pumping dialysis fluid into the space inside your abdomen (tummy) to draw out waste products from the blood. But as it does not provide a life-long solution, Joanne desperately needs a transplant.

She said: "Dialysis is keeping me alive. I'll be on it for some time but then it will stop working and I'll die."

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Joanne hopes to see her 12-year-old daughter Madison grow up.

Commenting on the grim outlook of being on a donor waiting list, the 42-year-old added: "So many people die every year waiting for a transplant. It's just awful.

"If I can't get one, I won't be able to see my daughter grow up. But if I can, it would save my life."

The former front line A&E nurse was born with her left kidney in the wrong place and had to undergo an operation as a baby so that doctors could locate it. It was discovered at the front of her body, which only occurs in about one in 900 births.

She then began developing water infections in her teens and late twenties. When these developed into kidney infections, she was diagnosed with chronic kidney disease (CKD) in 2000. Doctors also discovered that her left kidney was badly damaged, functioning at just 3%, and remained the size of a newborn baby's. It was then removed.

Joanne was dealt another devastating blow at Christmas 2006 when a consultant told her she would be unable to have children.

"I still remember it to this day. I was so devastated I couldn't even speak," she said.

"It's the most heart-breaking thing a woman could hear. It was all I had ever wanted but I had to resign myself to the idea that I wouldn't be a mum."

But just over a month later, she defied the odds when she discovered she was six weeks' pregnant.

"It was an absolute miracle. I couldn't believe it when I found out," she said.

"I was recommended termination because of my kidney function but I said, 'No way. What will be, will be.'

"When the consultant saw that I was determined to have her, he put himself in the theatre to help deliver her. He's such a lovely, talented man and looked after me brilliantly throughout my pregnancy."

Joanne gave birth by C-Section to a baby girl, little Madison, who is now 12-years-old.

"She had lots of tummy problems, so she had an ultrasound and we found out she has three kidneys. But it has no impact on her and she's very proud of it - she tells everyone," she said.

The Walmer Bridge mum's health then deteriorated over the years and she began having tests for dialysis and transplant in 2018. While doctors found that both her mum and partner Steve are both a blood and tissue match, they are unable to donate a kidney due to a medical problem. Madison is also too young.

"I became so tired that I couldn't even hoover the house without stopping for a sleep. I was nauseous, irritable, had brain fog and was sleeping more during the day," she said.

Joanne, who also has type two diabetes, has struggled with her mental health since being diagnosed and turned to food for comfort.

She said: "As a nurse, I knew too much. I was frightened. I had a lot of health anxiety and felt I couldn't control it. It turned into depression.

"It was horrible, like being in a black hole I couldn't get out of. You give up and don't want to do anything."

But that all changed when she attended a renal roadshow and spoke to experts and other patients who were on dialysis or had had a transplant.

"I took my mum and daughter and stood at the front door petrified. I couldn't go in. Then someone said I'd already made a big step by coming," said Joanne.

"After three hours, I came out a different person and knew I had to crack on."

Joanne was so determined to make the most of her life that she fulfilled her dream of becoming a custody nurse for Lancashire Police last April.

Life then started to look more hopeful when she received a phone call about a kidney offer from Manchester Hospital a few months later. But it was from a deceased IV drug user with a high risk of hepatitis C. After much soul-searching, she decided it was too risky.

When her kidney function dropped to five to six per cent, she was put on dialysis in October.

"When the consultant suggested it, I was petrified," said Joanne.

"At first, I was in denial. I thought, 'Why me? I've not done anything wrong.'

"But now I'm no longer tired or nauseous. It's completely changed my life. Even though it's time-consuming and limits what I can do as I have to change the bag three times a day, I can still live a life."

The day after starting the treatment, she received another phone call from Manchester calling her to the hospital as a standby patient for a potential donation. The kidney was supposed to go to another patient but there was a problem plumbing it into them. But she was eventually told to go home, as the operation had ended successfully.

"It broke my heart but I was pleased the other person got the gift. It wasn't my time. So, I'm hoping for a third time lucky," she said.

Her one kidney now runs at eight per cent thanks to dialysis, and she is on the waiting list for an organ from a deceased (cadaver) donor. It is more timely than ever, since all adults in England are considered an organ donor when they die, as of May 20, unless they have actively "opted out" of the register or are in one of the excluded groups.

Joanne is now appealing to anyone who is willing to be tested and potentially donate a kidney to help cut waiting times. There are currently around 4,800 people in the UK waiting for a kidney transplant. Living donor kidneys also tend to have greater longevity than those transplanted from a deceased donor.

Joanne added: "People can live on one kidney and have a full and active life. There's lots of support there out so you don't need to be frightened.

"Also, don't opt out of the donor list."

If you are interested in being tested, please contact [email protected] and for more information, visit https://www.organdonation.nhs.uk/

How many people in the UK are affected by organ failure?

* Some 2218 people are waiting for a transplant in the UK.

* Some 274 people have received a transplant since April 2020.

* The number of patients registered on the kidney transplant list from 2018-19 fell by 1% from 5,033 to 4,977.

* The number of deceased kidney donors increased by 2% to 1,506.

* Kidney transplants from living donors fell by 2% to 1,017, while transplants from deceased donors remained similar at 2,577.

* Some 100 kidney transplants were made possible by the paired living kidney donation programme.