Family bonds made even closer through transplant
A teenager who has lived with a chronic kidney condition for 16 years has been given a second chance of life, thanks to his dad.
Mark Blakemore, from Stokesley in North Yorkshire, was diagnosed with kidney disease as a toddler following an infection of Ecoli-0157.
A rare case of Ecoli-0157 leading to chronic kidney disease
Some people with Ecoli-0157, particularly children under five, can develop a serious condition called haemolytic uraemic syndrome (HUS). In rare cases it can lead to chronic kidney disease and failure.
It happens when bacteria destroys the red blood cells, which can block the kidneys’ ability to filter out toxic waste.
“We don’t know how he picked up Ecoli,” explained his dad, Ian.
"It may have been food poisoning, but Mark was the kind of baby who shuffled around a lot and got into everything, so it could have been from anywhere. He'd had vomiting and diarrhoea – like a lot of babies do – but it went on for a long time and when the diagnosis was eventually made he was bluelighted to hospital in Newcastle.
“He was really, really ill. We didn’t know what was going to happen."
Over the next few years Mark's kidney damage was managed with medication and regular hospital appointments to monitor his condition. His parents constantly and carefully watched his diet.
But 18 months ago things started to deteriorate. Mark was tiring more easily, and his blood pressure rocketed.
Shortly after that doctors broke the news that Mark needed dialysis – and a transplant.
“I was inconsolable, said Sue, Mark’s mum. “I was in floods of tears, just really, really upset."
Ian added: "It was explained to us that a transplant was the only way Mark was ever going to be able to live a normal life.”
Devastating news
For 17-year-old Mark, the news was devastating.
“When they told me I tensed up and felt afraid,” he said. "On one hand I was happy I was getting a new kidney, but there was this fear that my kidneys had now gotten so bad that I needed a transplant. That was hard to deal with."
In February 2020 Mark started overnight peritoneal dialysis at home, a procedure to remove waste products from the blood.
“Our lives were being run around the rhythm of dialysis and hospital appointments and it had a massive impact on family life,” said Ian.
“It was very disheartening at times," said Mark. "I couldn’t be a normal teenager due to procedures and tests. My friends tried to understand, but unless you’ve experienced something like that, it’s impossible to completely understand it.”
Mark's older brother Alistair has memories of this time too. “The beeps and whirring of the dialysis machine became standard noises to hear when going to sleep, and it never got easier to listen to them,” he recalls. “Knowing that there is nothing you can do to help is an uncomfortable feeling, one that is difficult to put into words. Suffice to say it was not a pleasant time, especially in the middle of a pandemic”.
"I was on dialysis for 10 hours every day, just to keep my kidneys in proper condition, but you have to accept it because it is keeping you alive,” added Mark.
Preparing for Mark’s dialysis became part of the family’s daily routine.
Mark fetched the large bags of fluid from the shed they were stored in, bringing them into the house where Ian connected the bags to the machine, and Sue hooked Mark up for his treatment. “Our lives seem to revolve around medication (up to 30 tablets a day), monitoring weight and blood pressure and the results from the dialysis machine each morning,” remembers Sue.
Finding a match
With the dialysis in hand at home, it was up to the renal team at Newcastle’s Royal Victoria Infirmary to find a match for Mark.
During initial donor crossmatching, Sue was quickly ruled out, but Ian was found to be a good fit.
What followed was a barrage of further tests – kidney function, ECG, X-rays, ultrasound and a CT scan – until Ian was given the green light.
“I don't remember ever sitting down and thinking ’should I or shouldn’t I?’ and making a decision to donate. I just knew it was something I had to do,” said Ian.
“The biggest relief for me was finally getting the transplant date as I found waiting for that very stressful. When we go the phone call with the date that was the turning point for us. We could fix on that date, plan for it, and work towards it.”
Comforting donor news
For Mark too, hearing his dad was going to be his donor was a comfort.
“I was relieved it wasn’t a stranger as I was told that a kidney from a close living donor meant the kidney was likely to last longer. And I think it shows my dad cares about me a lot. I feel happy, I feel honoured, and I feel incredibly grateful to my dad."
The transplant took place in Newcastle on 11 March 2021, which, ironically, was World Kidney Day.
While Mark was cared for by doctors at the Great North Children’s Hospital at the Royal Victoria Infirmary, Ian’s operation took place at the city’s Freeman Hospital.
Once Ian’s kidney was removed, it was transported three miles across the city to the RVI where Mark’s renal team was waiting.
Both operations were led by the transplant surgeon at the RVI.
It was a difficult day for Sue.
“I had a schedule of things to do to try and stop me getting worried, and that did help,” she explained.
"Because of Covid I was on my own, but there was lots of Zoom calls with friends. People were so kind, sending books magazines, messages of support and chocolate to keep me occupied. Their support got me through… that, and a puzzle book!"
Last week, Mark had final surgery to remove a temporary stent, so life is looking very different for the Blakemore family six months after the surgery.
“The actual operation itself I didn’t find difficult at all," said Ian.
“Afterwards there were a couple of days where I was in a lot of pain, followed by a month or so of tiredness, and it has been uncomfortable at times, but it wasn’t that bad. I’m 99 per cent back to normal and the difference to our lives as a whole is huge.”
Transplants can transform lives
“Mark has a lot more energy. He bounces around a lot more. We can all see the impact donating a kidney has had and he tells us that too. I have no regrets at all.
Mark is now back at college, fully immersed in his course studying acting for stage and screen. He can eat what he likes and been out bowling with friends. Having turned 18 he has even had his first pint. All very different to a year ago when the norm was going to bed at 8pm, producing monologues for college in his room, with all interactions being done remotely.
“If I had one hope for kidney research in the future it would be to diagnose problems like Mark’s early on,” said Ian.
Sue added: “We need more effective medicines to nip things in the bud so people with kidney damage don’t get to end-stage renal failure like Mark, and it can be sorted out without dialysis or transplant. That would be better for everyone."
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