Life on tour with chronic kidney disease

By the age of 25, Jonathan was already making waves co-running a marketing company. He was used to working long hours, but started to notice that something wasn’t quite right. He always felt run down, fatigued: like he had a heavy cold that he couldn’t shake off. His doctor kept telling him the same things: he was just stressed; he should work less, eat better and exercise more, but nothing seemed to help.

Finally, after demanding a blood test, he was diagnosed with chronic kidney disease (CKD) and told he was experiencing stage 4 kidney failure. He would need a transplant and urgent therapy to preserve what kidney function he had left until a donor could be found.

“Breaking the news to my family was the hardest thing I have ever had to do. Just seeing them so worried and trying to compute what it all meant was heartbreaking. I had decided very early on that I did not want them to donate… although I knew about live organ donation, I didn’t want to risk anyone else’s health on my account.”

Initially, the diagnosis felt like a death sentence, but Jonathan never let his condition define him, and even used it to motivate himself to follow his passion: music.

“I had always played the guitar and wrote songs but never really did anything with it. Nothing was going to hold me back now! No more excuses… there wasn’t time!”

That was how his band Kilto Take was formed. Starting out in their local recording studio, Jonathan and his bandmates were soon playing gigs and building a following in their local scene, all while Jonathan juggled both his day job and rigorous treatment regimen. They had barely eight gigs under their belt before they were signed by Medical Records to produce an album… and in a short while their audiences grew from hundreds to thousands, as they played bigger venues, festivals and live radio sets.

“Playing gigs was the most nerve-wracking experience I had ever put myself through, but it was well worth it… no matter how ill I felt, I was so driven by my passion and love of making music I could somehow overcome the physical symptoms and push my way through.”

While the band’s momentum was building however, Jonathan’s kidney function was dropping. Work had just started on recording the album when tests revealed that he had progressed to end stage renal failure (stage 5) and would need to begin dialysis.

“But I wasn’t ready… I still had so much more that I needed to do. Keeping in close contact with my healthcare team, I was able to really push beyond the fatigue and constant sickness to finish the album and keep playing.”

Jonathan had just come off stage from a big gig when he got the call that would change his life forever. A transplant had become available, and after a series of tests the match was confirmed.

Sitting in the hospital waiting for his transplant, the magnitude of Jonathan’s situation started to hit him. Everything had been building up to this moment, but it was not until he was forced to stop for a second that he realized just how sick he had become. Also in the waiting room was his ‘kidney sister’ who was set to receive the other kidney of their shared donor.

“It was a strange feeling… we were complete strangers about to be eternally united by the greatest gift anyone can give… Needless to say, we are still in touch to this day nine years later.”

After surgery, Jonathan’s new kidney was slow to take, seeing him suffer a bout of acute rejection, but the quick actions of the transplant team soon turned it round. Once in recovery, Jonathan went back to find his fellow recipient. They spoke for hours. He found out that she had been living with polycystic kidney disease and had been on dialysis for many years. She found the immunosuppression regime difficult, but her transition had been radical in providing her with new energy and freedom after years on dialysis.

“It is nice to have someone who truly understands what going through something like this feels like. Having that connection has been a really important part of the recovery – sharing similar stories and experiences.”

This newfound friendship was all the more important in the wake of all the conflicting feelings Jonathan felt after his transplant. The transplant had changed his life undoubtedly, but he had not been prepared for how physically and emotionally painful it would be.

“I found that there are a lot of expectations from those around you - family, friends, even doctors - about how they think you should feel or act once you get a transplant, but the reality of it is very different… it took me a long time to adjust. I went from extreme happiness about having a transplant to experiencing extreme guilt, sadness, and depression knowing how my donor passed away… and these feelings were magnified by the large quantities of steroids and immunosuppressants I was given to keep me from rejecting - the side effects from the medication impacted me greatly. That said, there is not a day that passes where I am not eternally grateful for the gift that has been given to me.”

While he was in hospital, the album was pressed and a launch date set for a few months time. Once he was out and sufficiently recovered to sing and play his guitar again, Jonathan threw himself back into the mix: making music videos and speaking to the press. The reception to the album (available on streaming platforms) and Kilto Take’s trajectory was exciting but something had changed in him. He was proud of all they had achieved, and what he had overcome to get there, but the transplant had put the importance of his health into perspective and he knew it was time to take a step back.

“Having my transplant was like someone hitting the reset button… everything changed in that moment. It wasn’t an easy ride by any means and there were complications post transplantation, but it did tell me that I needed to slow down, and I did exactly that.”

Jonathan is now 43, and views every day that passes as a gift for which he is incredibly grateful. Although living with a transplant is not easy, it has enabled him to forge a new path and a new beginning he never would have had.