Meet Mark, transplant recipient, PKD Charity fundraiser and volunteer, who discovered a love of running that not only gave him a new lease of life but also led to him becoming a British Transplant Games medalist.
Mark learnt he has PKD in 2008, when - following a cycling accident on a family holiday in Cumbria - he began passing blood in his urine. He was also diagnosed with PLD (Polycystic Liver Disease), which one in twenty people with ADPKD have by the age of 30. Aged 31 at the time and aware there was a 50% chance he could inherit PKD from his dad - who had a kidney transplant that same year – the diagnosis made him more determined than ever to live life as fully as possible.
And thankfully, despite losing 80% of kidney function in the ensuing years, he experienced few symptoms.
“By 2014 I was still working full time in London, leaving the house at 5am and finishing around 4.30pm before the long commute home. Other than tiredness I was very lucky compared to a lot people whose accounts I had read in online groups.” says Mark.
And it was this determination that led him to agree to take part in his first charity run, in what turned out to be the beginning of a new passion for him. Although, as he explains, this was no easy task “Please understand, I wasn’t a runner - running to the bottom of the road was a challenge, let alone running 5K!".
Not only was he unfit, he had just 3 weeks to prepare for the event which he'd also planned to complete wearing a polyester elephant onesie! However, by seeking help from a local running club he miraculously pulled it off, and caught the running bug at the same time. In fact he enjoyed this new lease of life so much, he volunteered to train to become a team leader at the club, helping others achieve their goals, regardless of their fitness levels and ability. As Mark explains “I’m not a great runner by any stretch of the imagination and I’m carrying extra weight because of the polycystic organs” (due to PKD, Mark’s kidneys and liver are far larger than normal) “So I’m never going to be a speed demon, but it doesn’t matter how fast you are, what shape you are, at a club everyone is there to support you”.
With this newfound love of running, and having just welcomed their first child - a boy - life was looking good for Mark and his wife, Gaby. Unfortunately things were about to take a turn for the worse. Although he’d hoped to avoid dialysis for as long as possible, further decline in kidney function and the sudden onset of severe headaches and nausea, led to him being admitted for emergency surgery to insert a peritoneal dialysis (PD) catheter.
Sadly, the location of the catheter and the development of hernias meant he could barely lift his baby son, and was also forced to make the difficult decision to hang up his running shoes. Life changed, and after several months of battling with the side effects of dialysis, and still unable to fully care for his son, Mark began to lose will and admits “I reached such a dark stage that I announced to my family that I wanted to stop treatment and receive palliative care instead”.
Thankfully his medical team persuaded him to continue with dialysis, and his wonderful wife and mum persuaded him to finally accept their offer to undergo donor screening. However, bad luck was about to strike again when it was discovered during screening that Mark’s mum had kidney cancer. Fortunately - having been caught early - she made a full recover, but it meant she was ruled out as a donor.
And then just as Gaby was on the last leg of screening, on his 39th birthday, Mark received the call! A kidney had become available.
The surgery was performed on 21 February 2016 at Guy's hospital – where his dad had his transplant 8 years earlier - by Consultant Transplant Surgeon Mr Nikolaos Karydis, who Mark was thrilled to meet again at our London Information & Support Day in February this year (both are pictured above). Much to his relief, all went well, and only 6 weeks later Mark started a training programme that was specifically designed to regain his strength post surgery. Before long he began running again, and was able to properly lift and carry his son, which after a year of not being able to do was "overwhelmingly joyful!"
It was then that he started to learn more about the British Transplant Games, which he’d first heard about from a member of the running club. Established in 1978, the aim of the games is to raise awareness of organ donation, encourage transplant recipients to lead active lifestyles and show appreciation for, and remember, donors and their families. Taking place in different host cities every summer, teams and individuals - including children as young as 3 – from across the UK compete in more than 25 sports.
After attending the 2016 games in Liverpool as a spectator - which was a great source of inspiration - Mark took the step to enter several events in the 2017 games in north Lanarkshire, where he won bronze in speed walking and silver in the 200m sprint! He’s since gone on to win 2 more silver medals and a bronze in the 2018, and 2019 games, and was just 2 minutes off qualifying to represent team GB NI in speed walking (a new love!) at the World Transplant Games. Unfortunately Covid-19 put paid to the games in 2020, but Mark is keeping his fingers crossed that he’ll be able to compete in 2021.
Meanwhile he continues to run and speed walk, both for fitness and to raise funds and awareness of PKD, organ donation and mental health. Plus, he loves nothing more (apart from his wife and son!) than helping and advising people who have never run before to build their fitness and even go on to compete in races!
We're sure it won't be long before Mark is going for gold. If nothing else he will continue to be an inspiration to anyone pre and post transplant looking to get active!
Thanks for all your support Mark, you're a champ!