Roz and Johns story
My name is Dominic, I’m a 41-year-old, simultaneous pancreas/kidney transplant recipient, who lives with my fantastic partner, Louise. We also share our home with two beautiful cats: Hettie and Harriet.
I was diagnosed with chronic kidney disease in 2013, after 25 years living with Type 1 diabetes. In October of 2016, my kidney function had declined to the point where I was deemed a suitable candidate to be placed on the transplant waiting list for a simultaneous pancreas/kidney transplant. I waited on the list for six months before I was given the life changing call in March 2017. I was informed suitable organs had become available. My transplant went ahead successfully and is functioning well to this day.
Being a Type 1 diabetic since age 10, I was always aware that at some point in my life, my kidneys could begin to fail. The reality of it for me personally, was very different from what I’d imagined. It was very distressing to discover that I was facing potential death at a young age, it caused me to experience episodes of depression and anxiety. However, as things progressed, part of me felt strangely very calm and serene, with a strong sense of hope. The realisation of mortality frees you in ways you might not expect.
“Some people struggle with normal things in life such has getting to work on time. Holding down a job. Or even finding the right life partner. What if I was to tell you, I would give the world for these struggles. Don’t get me wrong, I’m not disregarding these struggles or that others have different opinions and views on situations, but as I sit alone most of the time wondering…. what would it be like to be normal?
This is an excerpt from the opening chapter of the life story of 34 year old Chris Simpson from Wrexham. Born prematurely at 28 weeks, Chris was diagnosed with Posterior Urethral Valves (PUV), an obstructive developmental anomaly in the urethra, which causes bladder outlet obstruction in males. It occurs in about one in 8000 babies and it rapidly became apparent that Chris was suffering from the most severe of cases.
Chris has had renal failure since birth and has had four kidney transplants. Kidney disease has impacted on every aspect of Chris’ life, including his education, how he socialises, his diet and mental health. However he believes that his experience shapes how he views life, and he has developed a unique ability to empathise with others and think about how things affect him. This perspective enabled Chris to help others as a renal mentor for fellow patients at Salford Royal Hospital, and he would love to see this scheme replicated in Wales.
In September 2016 my mum was diagnosed with Polycystic Kidney Disease (PKD). PKD is an inherited disease which is passed from parent to child and is characterised by numerous fluid filled cysts which develop on the kidney causing kidney function to reduce. Mum’s consultant recommended that both my brother and I were tested for the disease. My brother’s tests came back negative, mine positive. Such is the nature of PKD, it is 50/50 as to whether it is passed on.
18 months after her diagnosis mum started on home dialysis whilst waiting for a transplant. Dialysis helps your body to get rid of waste products in your blood which would normally be done by your kidneys, effectively mums dialysis was doing the job that her kidneys couldn’t do. On the 8th May 2019 mum got the phone call that we had been waiting for to say that there was a kidney available for her. The effect of a kidney transplant is almost immediate. As soon as the kidney had ‘woken up’ the change was incredible, it was like mum had been given a second lease of life. The 50/50 nature of PKD means that there is a 50% chance that I will also need a transplant in the future, but there is also a 50% chance that I won’t.
I have been a runner for a number of years and was lucky enough to have a ballot place for the London Marathon in 2017 and so chose Kidney Wales as my charity. This was the start of my fundraising for them and I have since run the Newport and Edinburgh marathons as well as many half marathons and organised teams from my employer to take part in the Cardiff 10k corporate challenge. So far I have raised just over £9k and am already planning this year’s marathon!
I Joined Kidney Wales as a Patron in 2016. I have no direct connection to kidney disease; I am able to say that no one in my immediate family has ever suffered from CKD (chronic kidney disease) or a kidney related illness. This doesn’t mean I haven’t been touched by the kidney community.
My journey began in early 2016 when I attended my first Kidney Wales fundraising dinner. That night I was in awe to learn about the renal treatments and the strength and bravery a kidney patient has. Most of us know about the symptoms of cancer and treatments available, but unless you have been affected by kidney disease you are unlikely to know or understand what a patient will go through physically and emotionally. For example, patients can spend up to six hours on dialysis to waiting on a transplant match. It is a life limiting condition that can affect anyone. It was an eye opening evening and I have learnt so much about this terrible disease and I am still learning today.
I like to support many good causes, both large and small organisations, but there was and is something about this small Welsh charity that really stuck with me. The staff, volunteers and patients are inspiring, strong and lovely people. They support each other like a family and are all working to make things better for kidney patients today. I knew from that first event that I could help them make a difference, and I knew I needed to help kidney patients in Wales.
For me ‘My Kidney Journey’ has been one of education, inspiration and emotion. I will continue to do what I can to help kidney patients in Wales. I will continue to advocate organ donation, promote the benefits of a healthy lifestyle, attend fundraising events and cheer on my fellow runners at the Cardiff 10K!
My story began in November 2016 when I heard an interview on the Jeremy Vine show. He was talking to a man who had made a decision to donate a kidney to a stranger.
I had been thinking for a long time about how I could do something to help others, but with a busy work and social life, it was difficult to volunteer for a cause on a regular basis. This interview struck a chord and I decided to contact the transplant team at the University Hospital of Wales in Cardiff.
Despite initial opposition from some family members, I was determined to go ahead. The support from staff at the hospital was fantastic from day one. After several months of rigorous testing my kidney was removed in July 2016. During the few days recuperating, I spent time with people who had just received a kidney and those who were still on the waiting list. What a huge difference in their quality of life!
All I know about the recipient is that his name was Neil and the transplant was a success. I would love to have heard from him further but great care is taken to ensure that the donor and donee remain anonymous.
I have absolutely no regrets. I have returned to a completely normal life with no ill effects. I was back at work within a few weeks and back at the gym within a few months. It was an honour to be able to offer someone the chance to regain their health.
My first recollection of my Dad feeling unwell was back in 1991, when we went on holiday to Florida. He really struggled with the heat and was generally what we thought at the time, a grump for most of the holiday. Two years later at the Age of 45, he was diagnosed with Polycystic Kidney Disease and discovered it was an inherited condition that both his late Grandfather and Mum passed away from when they were in their 40’s.
A further two years on, in the early hours of 31st of July 1995, I remember sneaking in from a night out as the house phone was ringing. I answered and the person on the phone asked for my Dad. My Dad had his own business, so we were used to getting calls from the Police from time to time, reporting breakings, damage etc… but this call felt different! I remember waking my dad up and standing on the top of the stairs as he spoke on the phone, debating with my mum what the call was about and saying, “I think it’s a Kidney”, with my mum telling me not to be so silly as he hadn’t long been on the transplant list.
Much to our delight, my dad advised they had a kidney match and he needed to head into the Royal Infirmary straight away. My mum frantically packed a bag for him and off they went.
Later that day someone provided my Dad with the most wonderful gift he and his family could have ever wished for. At the time he was only the second person in Wales to have ever received a kidney pre-dialysis.
This July will see my Dad celebrate 25 years as a transplant patient. During those 25 years he has not only been given the gift of a better life, he has been able to experience some wonderful memories that his mum and grandad were never able to, including walking his daughter down the aisle, becoming a grandfather to three wonderful grandchildren and enjoying a much earned retirement.
We will always be grateful to the family that lost a loved one for their gift of life and for the support provided to my Dad and us as family from both the NHS and Kidney Wales.
My name is Lucy and I have been part of the Kidney Wales team for 8 months. My kidney journey started in 2017. I was a student at Cardiff Metropolitan University in my second year of studying Events Management. As part of my course I was required to plan an event, my charity of choice was Kidney Wales. I worked alongside five of my fellow students to plan the 2017 Kidney Wales Cardiff Walk for Life; it was a fantastic event which raised over £2,000! After the event I had the chance to visit the Children’s Kidney Centre at the UHW to see what the money we had raised was going towards. The centre was so colourful and full of toys, I was overwhelmed to see such young children on dialysis who were so smiley.
Planning the event alongside the wonderful Kidney Wales team was a great opportunity which not only helped me gain hands on experience, but it also influenced my decision to continue to work in the events industry particularly in the third sector. Two years on I jumped at the idea of working for KW when I saw a job post – I was absolutely thrilled to join the team! Working for Kidney Wales has given me an insight into the incredible work they do and the enormous impact it has on both patients and families.
My favourite memory so far was the Kidney Wales Children’s Christmas party which brought so many children with kidney related illnesses and families together – not only is it a time the children can have a break from treatment but also a day where they can make friends and feel special!