Are you Kidney Me?
“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.
Chris decided to put pen to paper and started to write by hand about his kidney journey; “my main purpose for sharing is to help research kidney issues for future generations.” But following a donation from Kidney Wales, Chris is now typing on a lap top and his story telling is motoring! His goal is to have his book published and posted to each renal unit across Wales, to inspire and bring comfort and hope to others.
In writing his story, Chris is also providing insight into his lived experience to help social work students in their studies. Caron Jones, Renal Social Worker attached to Wrexham Maelor Hospital explains, “Chris joined a group of individuals known as the ‘Outside – In’ group who support the learning of students who are studying for a social work degree at Glyndwr University in Wrexham. Members of the group work with the students to enable them to gain understanding of ill health, disadvantage and the impact on wellbeing. Chris has shared his inspirational story with the group and has blossomed as a result of this experience”.
At Kidney Wales, we’re looking forward to reading Chris’ book – hope you are too!
Chris would like to express special thanks to three key people who have given him exceptional support during his kidney journey:
Renal Social Worker, Caron Jones:
“I honestly don’t know, how I can truly explain or show my gratitude towards you. In my eyes you’re an absolute diamond. You are such an Influential and motivated person to do the best you can for everyone. You go over and beyond fulfilling your job role. Your professionalism is exemplary, keeping to boundaries yet always exuding the rapport of a true friend with a heart of gold. Thank you seems so insignificant for the effort and work you have put in over the 15 years and more. That is an achievement in which I count myself extremely lucky. From bottom of my heart I wanted to say Thanks for being the amazing you”.
Julie Williams, Transplant nurse:
“Julie was one of the first nurses I ever met. I have grown so close to her that she feels more like a second mother to me really. Even though she is very professional fulfilling her role, she, always goes out of her way to make me laugh and feel comfortable. She would never allow me to see how busy she was or if she was stressed. She would always show an interest in my personal life. She would playfully question me about what I had been up to and she would ask about any ladies I had on the go… She would make me out to be a Lothario. If I didn’t have a lady friend, she would say to me things like “you don’t need a woman, listen to your mum” or “you have all us lovely nurses here running round after you what more could you wish for”. Her personality is infectious and her smile intoxicating. You couldn’t help but smile when she is around, she won’t let you be sad for long. Every time, I would see her she would come over to me and give me a hug and smile and say, “hello gorgeous” and comment “oh god you smell nice” These things help build my confidence bit by bit. It has been a real pleasure and privilege, having you has my transplant nurse. You have supported me through not only my medical difficulties but also my relationships and breakups and my lowest points of my mental battles. You even stood by my side when having the transplant from my dad. Now you are getting to see me at my personal best even though my body is failing me yet again. Please don’t underestimate your worth and the help and support that you have given me throughout my life. You are truly inspirational, and I am proud to have met you”.
Liz Glyndwr, Outside In Leader and the students and Members of Outside In for believing in my potential:
“The first time I was introduced to Liz was through Caron who explained Liz would do everything she could to make me feel comfortable within the class. Liz was very welcoming introducing herself and asking if we would like a coffee before introducing myself to the other members of Outside In who were also nervous before we all got introduced the students. Week by week, Liz would show respect and belief in my potential to help others. Always smiling and laughing, helping to create a warm friendly environment. At first when you would say my name in class, I would think oh no! But over time, I realise you were building my confidence to speak about myself in front of class. You praised me after my presentation and told me how proud and privileged you felt to have me as part of your team. I will always be grateful to be asked to participate in Outside In and look forward to many years working together. Thanks for your support, guidance and most importantly having faith in me.”