Three brothers’ lives saved by kidney donors

Three brothers with a rare genetic kidney disorder have all now received life-saving kidney transplants within three years of each other, thanks to organ donors across the UK.

John, Bill and Robert Whiteford all suffer from autosomal dominant polycystic kidney disease (ADKPKD) – a genetic degenerative illness which sees kidney function gradually decrease to the point of failure, meaning all would have required ongoing dialysis.

Luckily, thanks to donors, the brothers all have a brand new lease of life, and a new kidney, with John Whiteford successfully receiving his transplant last week at the Queen Elizabeth University Hospital, following seven months of dialysis.  

Each brother received their kidney through separate routes – each with their own unique story – but all being reliant on donors.

Mr Marc Clancy, lead consultant for transplant surgery at NHSGGC, who also performed John’s transplant, said: “The three brothers highlight the different routes people can receive transplants and we’re delighted to have been part of the process for John and Bill, as well as John’s daughter Sonia’s kidney donation. Furthermore, it’s fantastic to see them all recovering, albeit at different stages, and we wish them well for the future.

“Across NHSGGC we’ve been fortunate in being able to maintain a full kidney transplant service across the West of Scotland Renal Transplant Centre. This means a total of 224 transplants have taken place since April 2020.

“Thanks to the new opt-in rules which came into effect earlier this year we expect the numbers of transplants to take place across the UK to increase upwards of 30% over the next 5 years. This is fantastic news for our patients, and despite the pandemic, we are in a strong position within NHSGGC and anticipate similar growth in figures within our own service.” 

Meet the brothers

John Whiteford – received a kidney through the Living Kidney Sharing Scheme

John, who was discharged earlier this week, received his transplant at the Queen Elizabeth University Hospital, thanks to his daughter Sonia who was not a match, but was happy to donate her kidney as part of the UK Living Kidney Sharing Scheme. The scheme means if a donor is unable to donate directly, as was the case here, they are registered in a national scheme which matches them up with other pairs throughout the UK. This means Sonia’s kidney helped save a life elsewhere, while another donor’s kidney was given to John.

The retired minister, who is married with four children, is looking forward to getting his life back on track, and especially to spending time back in Sweden where his wife is from. 

John said:  “I am massively thankful to everyone working in dialysis and in the transplant arena. The team at the QEUH was excellent throughout and the care has been second to none. 

“I couldn’t believe it when I was matched, it really is life changing news. The dialysis keeps me alive but I’m tethered to a machine three days per week and you’re energy levels are low. Transplant is the long-term solution and I’m incredibly thankful to my daughter Sonia, and to the UK Living Kidney Scheme.” 

Daughter and 38 year old mum of two, Sonia, said: “The Living Kidney Sharing scheme has allowed me to help my dad and that is a huge privilege and an amazing thing to be part of.

“I can already see him getting better and his kidney function is improving every day. There’s a real feeling of joy and relief at the same time, and while I was only discharged this week, I’m already feeling my energy levels returning. As a mum of two getting that back fully is essential! 

“The genetic condition which runs in our family means 50% of us will have kidney issues so we really are all in this together, and it’s inspiring to see how well programmes like the Living Kidney Sharing scheme work in practice.”

Bill Whiteford – received a kidney from a friend 

Retired BBC journalist Bill Whiteford is well on his way to recovery having received his kidney two weeks ago at the Queen Elizabeth University Hospital (07/08/21). Bill was lucky enough to have a friend who turned out to be a match.

Bill, who worked for the BBC for years, presenting the likes of Good Morning Scotland and BBC Drivetime, commented: “First and foremost I am grateful to my friend. It’s a massive decision to give up a kidney and I am humbled for his support, without which, I would inevitably still be on the waiting list and fast approaching the need for regular dialysis.

“I’d urge everyone to consider donating an organ – whether that’s through the living donor programmes or by having that important conversation with family to let them know your organ donation wishes in the event you pass away.”

Robert Whiteford – received his kidney from an altruistic donor through the Living Kidney Sharing Scheme

Robert, 67, was the first of the brothers to receive a kidney transplant. The retired vet who stays in Scone also received his kidney through the Living Kidney Sharing Scheme, with ex-wife Linda donating her kidney as part of the process. Luckily Robert was matched up in the first round of checks which meant he was able to avoid going on to dialysis.  Three years on and he remains extremely grateful to Linda and the altruistic donor he was matched with through the programme.

Robert said: “I started developing symptoms around 10 years ago, and following a scan it was confirmed that I had the condition. Following that, my kidney function gradually fell to 8% but luckily through the programme I was matched very quickly.

“I’m extremely thankful to Linda and the altruistic donor, who joined the Kidney Sharing programme and helped facilitated my transplant, and others.

“I would tell anyone who is considering donating to a friend or loved one, to seriously consider the programme – even if you’re not a match, by donating your kidney you can ensure your loved one is matched with someone else.”

Reality of kidney disease highlighted by transplant recipients for World Kidney Day

Two kidney transplant recipients have spoken about the reality of living with kidney disease ahead of World Kidney Day (Thursday 11 March 2021).

Fiona Davies, 39, from Airdrie, and Ross Young, 48, from East Calder, both diagnosed with Polycystic Kidney Disease (PKD), have shared their gratitude for the transplants that have given them their lives back, and the chance to see their children grow up.

Fiona and Ross have backed the campaign to raise awareness of the forthcoming organ and tissue opt out law, in the hope that it will get people thinking about their donation decision.

There are currently around 420 people in Scotland waiting on a kidney transplant, many of whom are on dialysis to keep their kidneys working. 

Ross was diagnosed with PKD in 2003, and has since found that his two sons, now 13 and 16, have the same hereditary condition.  His kidney function deteriorated to the point that he was listed for transplant in March 2010, and received his transplant in November 2010 after only ten weeks on dialysis.

Fiona was diagnosed with PKD as a teenager, which she successfully managed until the birth of her son James in 2012 impacted on her kidney function.  She reached end stage kidney failure in October 2016, and was listed for transplant in March 2017. Her transplant went ahead just three weeks after she was put on the waiting list.

Scotland’s opt out law, which will be introduced on 26 March, means that if people aged 16 and over haven’t recorded a decision about donation, they will be considered a possible donor if they die in circumstances in which they could donate.

People have a choice – to be a donor, or to opt out of donation – and the campaign is encouraging people to record their decision on the NHS Organ Donor Register, and share it with family.

Informing family is important, as under the new law, they will still be consulted to check what their loved ones latest views on donation were.  This is to ensure donation doesn’t proceed where the individual didn’t want it to.

Speaking about the impact kidney disease and her subsequent transplant had on her life, Fiona said: “Looking back, I had no idea how ill I actually was towards the end.  I was getting through life, but was constantly tired and had no concentration.  Motivating myself to do things became harder and harder. 

“I wanted to hold off dialysis until my son started school, but could start to feel things dipping.  I had restless legs and couldn’t sit for any length of time, I felt sick when I ate and was in bed for 7.30pm every night.

“I got the call just minutes after my son’s fifth birthday party and the transplant surgery all went to plan.  I was home six days later and things just got better and better.  It’s quite unbelievable the change it’s made to my life and I have my donor to thank for that.

“I am very pleased that Scotland is moving to an opt out system. You don’t truly understand the impact of organ donations until your life is touched by it and I hope that the move will help increase the number of viable organs available and help those waiting.  Because of organ donation, my son has his mum back, and I have a future.”

Talking about the law change to an opt out system from 26 March, Ross said: “I wouldn’t say life on dialysis was easy, but I knew it was keeping me well, and then the transplant changed everything.

“I have always felt strongly about the law changing to an opt out system, and I even approached the Scottish Parliament, which is when I learnt the wheels were already in motion for the Bill. 

“I am really pleased to see the law finally coming into action. It’s the simplest way to make a difference while making sure everyone knows they’ve got a choice. If you don’t want to be a donor you just have to opt out.

“Knowing that both my sons have the same condition as me, I’m grateful for developments like the law changing before either of them finds themselves in the position I did.”

For more about the law change, and to record your donation decision, visit organdonationscotland.org or call 0300 303 2094.

Kidney Care UK is hosting a webinar tomorrow (Thursday), which will involve a range of speakers and experts answering questions around living well with kidney disease, kidney health, and the forthcoming organ and tissue donation law change in Scotland.

The event is open to anyone affected by kidney disease, and you can book your place here: www.kidneycareuk.org/scotland-webinar