CKD diagnosis

Lee (Kate's husband): "When I was 18, I was really unwell with tonsillitis and after going to the toilet, I noticed my urine was black. My doctor sent me for tests and results showed I had IgA nephropathy.

"In the beginning, I was monitored at six-monthly appointments and because it's a progressive disease, there was no real treatment. Then, when I was 33, my kidney function just dropped quickly. It was all a bit of a whirlwind; I started on dialysis and within 18 months, I had the call for a new kidney."

Pregnancy and transplantation

Kate: "My pregnancy with our son Harvey was very 'normal', and we were so excited to be having our first child. Lee was having haemodialysis (HD) at the time, and he was on the transplant list. We chose to have the birth at Nottingham City Hospital because that's where Lee was dialysing, so if he needed dialysis while I was in labour, we'd be near each other. The baby's due date came and went, as often happens with a first baby, and then a few days later the hospital rang and told Lee, 'We've got a kidney for you; how quickly can you get here?' We felt incredibly lucky to have been chosen for transplant after just one year on the list.

"Lee actually didn't answer the phone initially, so they called me and I rang him immediately! We were both excited and also worried. I was panicking about going into labour without Lee and decided on a plan B birthing partner, just in case he missed the birth because of his transplant. I joked to him that he had always said he didn't want to be there as he was worried about what it might be like!

"We put my maternity bag and Lee's hospital bag in the car and drove straight to the hospital. He had a full day of testing before the operation was confirmed. I then went into labour, and our son Harvey was born the same day Lee had his transplant. We were both in the same hospital at the same time, but for very different reasons.

"When I had had Harvey, I wasn't allowed to take him off the maternity ward to go and see Lee so my sister-in-law Melissa pushed me down to the renal ward in a wheelchair. We had to leave Harvey in a cot in the birthing suite which made me sad. Lee looked really groggy and poorly from his transplant and had a line in his neck. I asked him if he was in pain and he said yes and I replied, ‘Not as much as I just was!’"

Life post-transplant and transplant failure

"If we could have chosen a period of time for Lee to be transplanted and well, we would have picked those years when the children were young. Pregnancy with our second child, Amelia, was pretty straightforward for me with no issues at all and Lee was healthy. His kidney transplant meant that he was with me every step and was helping out with Harvey instead of going to hospital every other evening for dialysis.

"We had a lovely 14 years of health and normality while the kids grew up. We enjoyed holidays and days out and all the things other families do when everyone is 'well'. But, while Lee's transplant was a near perfect match, eventually it failed. It was nothing to do with the kidney, it was the type of kidney disease that Lee has. The disease just eventually made its way into the new kidney and so it failed in the same way as his own kidney did.

"It felt totally different when Lee went on home haemodialysis (HHD). Previously, when Lee was on HD in hospital, we had had no responsibilities and were a lot younger. Life seemed simpler. As we got older, we'd bought a house and had a mortgage to pay, and there were all these extra unknowns.

"However, we knew we done it before, and we could do it again. The kids were at an age where they understood Lee's kidney disease more, and they'd grown up with their dad going into hospital for this that and the other, so they knew no different.

"We decided to embrace the nocturnal home haemodialysis from home set up. It’s the best decision we ever made. I do still worry about the overnight treatment, but it has given Lee an even better quality of life."

Trying for living kidney donation

"While Lee was on dialysis for the second time, I felt like I needed to do something, so I decided to ask the hospital about kidney donation. I had many tests over many months, but the same issue kept coming back: blood in my urine. I was advised to get a kidney biopsy to understand the cause of it. I had the biopsy on the kidney ward which felt odd, almost like I was in Lee's shoes, with Lee fetching me from the hospital rather than the other way round!

"After the biopsy I was diagnosed with a rare form of inherited kidney disease. Luckily, it needs no treatment at all and will probably never ever affect me. I was told I could still donate if I wanted to but there was a possible higher chance of my remaining kidney failing in later life. It wouldn't be fair on the kids to have two poorly parents, so we decided to stop the process of my donation. I was really sad and annoyed as it felt like our only chance at living kidney donation."

Running the London Marathon 2025 and fundraising for Kidney Care UK

"During that kidney donation process, I'd joined a work WhatsApp running group to get fit for potential donation. Running became my passion and my get away from the stress of trying to bring up a family, helping Lee with his treatment and working. My 10km runs turned into half marathons and I was loving distance running; I really got the running bug.

"I work for Anglian Water and was excited and pleased that one of our supported charities is Kidney Care UK. Stacey, a colleague and friend of mine who works with the vulnerability team and with our supported charities, mentioned running the London Marathon 2025 for Kidney Care UK. I had just been given the news about my inherited kidney disease diagnosis, and she knew how much I liked running, so she offered me a place in the London Marathon through the partnership and I snapped it up!

"It took a while to get over my news that I couldn't donate my kidney to Lee, and fundraising for Kidney Care UK helped me to feel I was making a difference in another way.

"Training for a marathon is no joke, and I was incredibly lucky that my running friend Faye was also running it. Some nights I'd get home from work and have to run a half marathon in the cold and rain. It was tough and the distance deserves discipline but it's an honour to run the London Marathon.

"The day came and I was so nervous. Given mine and Lee's record, I was half-expecting to be halfway through the marathon while Lee was rushed off to have a transplant! To be honest, the weather was too hot, and I didn't get the finish time I wanted, but I did the best I could in the heat and enjoyed it so much. The support on the London Marathon course is like no other. The shouting never stops and running over the finish line made me so emotional. I truly believe that anyone can run a marathon, you've just got to dedicate yourself and train."

Life now and waiting for another kidney transplant

"Lee has been on and off the transplant list for about four years and it's relentless. He still dialyses five nights a week which is monotonous and he gets very tired very quickly. He has had to change his hours at work to do shorter days.

"We have had holidays abroad in the past and they went very well but last year we tried to do the same and on the morning of the flight Lee became poorly. Although we made it to the airport, he didn't make the flight but had to divert to the hospital with a fistula infection. The kids and I went on the holiday without him, which was heartbreaking and it just wasn't the same, so this year we are staying in the UK and just doing some days out together.

"The longer time goes on, the more fed up we get with kidney disease. But we get through and, in more ways than one, we do feel incredibly lucky to be able to dialyse at home and to have had the years we had with Lee's transplanted kidney. Dialysis and CKD takes its toll, so we are hoping for another chance of life with a transplanted kidney very soon."

This story was first featured in Kidney Matters issue 28.