I’m James Barnett
Despite kidney problems from birth, I count myself as becoming a kidney patient at age 24 when I went for a routine health screening with my GP. Despite having no symptoms, I was diagnosed with End Stage Renal Failure and referred to UHW Cardiff where I was soon put on Peritoneal Dialysis (CAPD) in 2008.
In 2009 I received the amazing gift of a kidney transplant which, after a bumpy road, including several bouts of rejection and a diagnosis and successful treatment for Hepatitis C, I lived a full and active life with my transplant until 2019.
In 2019 I was told that my transplant had failed. I attempted to go back onto CAPD but, after some very difficult months including temporarily losing 80% of my vision due to blood clots in my eyes, I was transferred to Haemodialysis at the Liz Baker Unit, Morriston Hospital. I attend there 3 days a week for 4-hour session but with travel and waiting times it all takes around 7 hours.
Throughout my kidney disease journey mental health has unfortunately never been mentioned and I have never been offered support or assistance to deal with the challenges that I have faced. There were two specific situations where had I had support, I would have coped better.
Firstly, was my diagnosis of having acquired Hepatitis C from my donor. This was shocking news and having little knowledge of Hepatitis C it completely floored me. I had to fight for treatment as I didn’t meet the criteria for immediate treatment. This included writing letters to the Chief Executive of the Health Board as well as the medical teams I was being looked after under. At the time I was very depressed and had numerous very dangerous episodes.
The second situation I struggled emotionally with was when I was told that my transplant had failed. This was told to me on a regular check-up and I had had little to no warning this was coming. I was told I was going to have to go back on dialysis within weeks and then found myself standing alone in the car park outside clinic within minutes. This was a gut punch as I knew it meant that my whole life was about to change. Going from working 50+ hours/week in a physically demanding job and having a full and active social life to giving up work and having little to no social life the effect on my mental health was dramatic.
I know mental health is very difficult to talk about and I believe men find it even more of a challenge. I admit I am guilty of using the term ‘man-up’ and ‘get on with it’ but sometimes this is not helpful nor healthy. I think the challenges of COVID-19 have brought the challenges we all face with mental health but especially men to the coalface and men are now more willing to speak about how they are coping more readily.
I am on the waiting list for another kidney transplant and am hoping to get the call soon.
I am a volunteer ambassador for Kidney Wales where we use our experience of kidney disease to help educate and raise awareness of kidney health throughout Wales.