I feel the need to be worthy of my donor kidney
Thomas Finan was just 14 years old when he was diagnosed with kidney disease. He had been having bad night sweats which initially were put down to hormonal changes. But thanks to his mother’s persistence, and a supportive GP, he was referred for further tests and diagnosed with oligomeganephronia, an abnormal development of the kidneys.
Thomas, who works for the NHS and lives near Redditch, says, “For several years after initial diagnosis, my health remained stable. I took blood pressure medication daily, was active at school, taking part in sports, and lived a normal life. The only downside was I couldn’t follow my chosen career into the Royal Navy.”
But in 2012, Tom, who was then working for Tesco, began to feel unwell. He was rundown, and had been experiencing cold and flu symptoms for some weeks before seeking help with the GP.
9% renal function
“In June, I went to see our family GP, again. She immediately said, ‘Oh, you don’t look like your normal self.’ As soon as my blood tests came back, she sent me to the Queen Elizabeth Hospital in Birmingham to see the kidney assessment team. There a consultant told me I had just nine per cent renal function, and would need to be put on the kidney transplant list after they had stabilised me. A few days later, I had a line inserted into my neck for haemodialysis. Everything happened in the space of a week.
“I found the whole experience of having the line inserted traumatic. In addition to the physical pain and discomfort, I was so young, and a private person and I found it a violation of my dignity.”
After a short stint on haemodialysis, which he found “awful”, Tom switched to continuous ambulatory peritoneal dialysis (CAPD). In this process the toxins are washed from the body by passing fluid into the body cavity which is then drained away after a number of hours, four times a day. Even though sometimes he was doing the fluid exchanges while at work, he was much happier. By the end of the year, he was able to switch to overnight peritoneal dialysis (PD).
Tom was determined he didn’t want to be treated any differently. But, he says, this approach took its toll. “I didn’t want to be seen as weak or not capable. I pushed myself to make sure that life stayed as normal as possible, but in hindsight this isn’t the healthiest approach.”
As well as dealing with dialysis, Tom also had to make a decision about his potential transplant. He says, “I decided not to have a live donor, as I didn’t want to put someone else in a position of risk. I felt that this was my test, something I had to do without putting anyone else in harm’s way.”
While he was on the list, Tom left Tesco to work for the NHS as a manager in primary care and moved back home to live with Mum after a relationship break up. Medically, he knew that his time on PD was limited and the need for a transplant was becoming more urgent. However, when he got his first call, he and his consultant decided the quality of the organ was marginal and he should wait.
Receiving the call
Then, in October 2015, he got the call he’d been waiting for. “I was in the office about to go into a meeting,” he says. “And my phone started to ring from an unknown number, and for some reason I went back to pick it up. The rest is history. It was a good match, and after the operation everything has worked fine. I haven’t looked back since. My renal function is excellent and I take minimal medication. I’ve run several 10ks and half marathons. It was like someone had just pressed play again on my life.”
After his experience, Tom is supporting this year’s Kidney Research UK campaign for better mental health provision for kidney patients. He has had great support from his family and friends, in particular his partner Anthony and mum Jude, but says that renal counselling from someone who understands the ins and outs of kidney treatment is invaluable.
“I was offered renal counselling when I was on PD and going through a rough patch and found it helpful,” he says. “It was hard being the youngest man on the haemodialysis unit, and with other patients at a different stage of their life – I think that would be a challenge for any young person.
“Also, when you start treatment suddenly, things can be very, very frantic. There’s action, a feeling of moving forward, but when the dust settles it can be hard. I remember being alone at home in my childhood bedroom at 1am one night, thinking, ‘What now?’ All that activity has come to an end and all I could see was some sort of awful future stretching out in front and that was hard.”
As a result, Tom believes that regular contact would help kidney patients feel less alone. “It’s tough once the music stops and you are left to get on with treatment, and that’s the point where some sort of gentle touch would help people considerably, preferably from those with lived experience of what it’s like to receive treatment.”
Likewise, he also feels that transplant patients should be given more support further down the line. “People do make reference to survivor’s guilt, and there’s not a day that goes by when I don’t think about the person who had to die to enable me to live. I feel the need to be worthy of that organ, to strive hard and push myself forward. Some days the weight is more and some days less, but it’s always there.
“I could have accessed support at the time of the transplant, but I think there should be an understanding that there is a time and a place to offer support and people need to be in the right place to accept it. There’s an attitude with support services of, ‘If we build it, people will come,’ but it’s not always like that.”
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