Case study: Living Kidney Donation - a real story

Meet Andrew, 52, and Chris, 50, a husband and wife who have first hand experience of the true gift that living kidney donation can be.

Andrew was given a shock diagnosis of Vasculitis in January 2016. The diagnosis followed weeks of Andrew feeling under the weather, which led to blood tests on a Friday and an urgent phone call on the following Monday to say Andrew's kidney function had dropped to 40%. An urgent appointment was secured at James Cook and blood tests at 2pm led to a call at 5pm to say Andrew's kidney function had now dropped to 20% and he needed to be admitted to hospital.

Andrew immediately started six months of intensive treatment including drugs, steroids and low grade chemotherapy. Clinicians performed a biopsy and at the end of the six months Andrew was given the news his kidneys were damaged beyond repair and he would gradually deteriorate.

Amazingly, Andrew remained at work in his role as a Senior Partnerships Manager at the Department of Work and Pensions full time for around 15 months. However, as an active person he was no longer able to cycle or play football due to his lack of energy and his social life was virtually non-existent. His energy levels reduced as his kidney function continued to fall until, over Christmas 2017 he had a Peritoneal Dialysis (PD) catheter inserted in case he needed dialysis ahead of a transplant, which was expected early to mid-2018.

Andrew's condition deteriorated further after the PD catheter was inserted and, because he was barely eating and lost half a stone in a few days, he was admitted to hospital. The hospital tried PD but the catheter had not had time to settle and an emergency neckline was required. At this moment in time he felt like everything was going wrong and it was the support of family and friends that kept him going. Andrew started haemodialysis three days a week and this helped to some extent, but unfortunately he wasn’t fit enough to return to work.

During this time, hospital staff explained to Andrew that he either needed a living kidney donor or to go on the organ transplant list. Andrew was told by staff he could ask family and friends if they were prepared to be tested and his wife Chris posted on Facebook and put herself forward to donate a kidney, as did several friends.

Chris and a friend came back as the best matches, and whilst Chris was always likely to be the one chosen to go forward, the friend had a historic blood disorder that made him less favourable to be a living kidney donor. Chris had to lose three and a half stone to donate her kidney but her dedication and determination ensured she lost the weight to allow the transplant to go ahead.

The transplant went ahead on 21 March 2018 at the Freeman Hospital in Newcastle.

Professor Caroline Wroe, Deputy Clinical Director at NIHR Clinical Research Network North East and North Cumbria and Consultant Nephrologist at South Tees Hospitals NHS Foundation Trust said: "As the Consultant who treated Andrew when he first presented with kidney disease I am delighted to see how well he is since Christine donated her kidney to him.

"Having a living kidney donor transplant offers kidney patients the best outcomes for health and wellbeing and Christine's generosity is life transforming. I wish them both the best of luck in the future."

We caught up with Andrew and Chris to talk about organ donation, their recovery and how they became involved with the Transplant Games...

So how was your initial recovery?

Andrew: "The first few days after transplant went quite well for me. I only pushed the pain relief button once and managed with paracetamol and codeine most of the time. I was up and walking after a day but very sore and getting in and out of bed, putting on socks etc was not something I looked forward to!

"I had problems with the amount of fluid I was passing and they kept having to up my liquid intake, at one point I was drinking 4-5 litres as well as some by drip. Eventually they reduced my intake and the kidney quickly started to operate properly. After about a week I was sent home for the bank holiday weekend and only had to go back to be officially discharged which was great for me.

"I started to walk to aid my recovery and over the next two weeks found the pain started to lessen. I returned to work part-time at the end of May 2018 which was about nine weeks after the transplant and was back working full-time four weeks later.

"I also started to run and cycle a bit in August and was doing a good amount of exercise by October - including spinning classes! I trained for a Coast to Coast bike ride which I completed in May this year, 150 miles over three days and lots of steep hills, and am due to do a half marathon in September as part of fund raiser. My fitness is good now but not sure it is quite as it was, I am of course three years older!

Chris: "In my initial recovery the morphine didn’t agree with me so I felt sick and was given a few different types of anti-sickness tablets after surgery and then had codeine for pain relief for the two days I was in hospital before I was sent home.

"From being sent home I did not take any more pain relief as it was discomfort I felt, rather than pain.

"I returned to work eight weeks after and following my return to work the main problem for me was tiredness, which lasted several months.

What were your first thoughts when you learned Andrew needed a transplant?

Chris "There was no doubt in my mind, I knew I would get tested and as long as I was a match I would do it.

"I've always been on the organ donation register and before this process I hadn't realised how few people on the register can actually donate an organ.

"I'd encourage anyone who was considering donating an organ to go ahead, I received plenty of advice from donation coordinators at the hospital, they also stressed the risk but that never put me off. When I had my counseling interview it is quite a shock at first but there are always risks in life and it meant Andrew didn't have to join the list to wait for a suitable kidney."

Andrew: "I recognise that it can be quite intimidating and daunting for some people where live donation is involved and is still a very difficult decision donating a deceased relatives organs. After two and a half years being ill and not being able to do much it has completely changed my life and I still can’t believe what Chris did for me, I can never thank her enough.

"I now have my life back and I/we can enjoy doing the things we always used to. Whilst it is always a hard decision it is something that does make a massive difference to somebody’s life."

How did you get involved with the British Transplant Games?

Andrew: "The Transplant Games were mentioned to me by Professor Caroline Wroe and then I made further enquiries myself.

"I have just returned from the British Transplant Games in Newport after competing, I played snooker and golf as well as running the 800 metres and the 5k donor run. I got a bronze medal in the 800 metres although there were only three of us in the race! I'm really pleased as the other two competitors are both club runners and I did knock 24 seconds off my training best - I probably needed a tougher training schedule but it's not always easy to fit around work!

"As this was my first year competing in the Transplant Games I did not qualify for the World Transplant Games in Newcastle this month but I am going to do the 5k Gift of Life run on the Sunday ahead of the games which I am very excited about."

Chris: "I did the 5k donor run (not sure that run is the phrase I would use). The British Transplant Games were an inspiration for Andrew and I, especially seeing all the young children and the parents who had lost loved ones but had donated organs.

"We built a real team spirit in the Newcastle team and everyone made us very welcome, Vicky Horan did a great job as team manager and she has been through a tremendous battle herself."

Andrew: "I'd encourage everyone to go along and enjoy it. Being able to take part is fantastic, and to everyone competing I encourage you all to think about where you were before, being able to take part now is a massive achievement.

"Participating also shows gratitude to your donor, so enjoy it and enjoy sharing the experience with others in same position as yourself. You are all in the same boat and will be made to feel welcome. The Newcastle team I was part of knew each other from previous years but they quickly made us feel part of the family and we have made a lot of new friends"

Chris: "Good luck to everyone competing!"

Andrew and Chris are fundraising to support the North East Patients Kidney Association and the Renal Unit at James Cook University Hospital in Middlesbrough. To donate visit: https://www.justgiving.com/crowdfunding/themudds