My journey with kidney disease started in 2007 when a new GP fortuitously spotted excess protein in my urine from a routine test. I had several further tests, culminating in a biopsy in 2008 that just showed irreversible kidney damage. I’ve never really known what caused the damage, even to this day the consultants can’t tell as all they see is the damage. There is no history of it in my family, so it will remain a mystery.

At this point in my life, I was 31, newly married, and the biopsy came between the birth of my first daughter and second daughter so I didn’t  have time to think about kidney disease. I was told I would someday need treatment but for now to carry on, keep going to check-up’s and taking the pills.

I had a slow decline over the next decade but things seemed to accelerate as we went into COVID lockdown and my kidneys failed in the summer of 2021.

In late August 2021, I started several tests to ascertain my suitability for the transplant list. Following a tweak in my medication, I was listed in late September 2021. My mobile phone became my new best friend, pensively waiting for “the call”. I had read about people getting the call with days of being listed but by December, I realised that would not be me.

Christmas 2021 was a tough time. My December appointment with the consultant confirmed that I needed to start dialysis ASAP, and following a bout of COVID-19 in the house, I ended up going onto Peritoneal Dialysis (PD) in January 2022. I was still secretly hoping the call would come before the treatment commenced but a watched phone never rings. My kidney function was at 9% and I was feeling very sick and tired.

PD was hard at first, but I soon realised that one of the benefits of PD is giving me control, especially being able to do it anywhere with just the combination of good hygiene and gravity. I got on well with PD and soon only had to do five days out of seven. This aside, I missed the normality of not going away encumbered, something I knew a transplant would give me. 

We managed to get away in our camper as I was determined to get away, but foreign holidays in the sea and swimming pool that EVERYONE else was doing was just a step too far for me on PD. I was also working exclusively from home and becoming quite isolated.

Then a glimpse of light in late June 2022, a live donor had come forward and was a good match. We went to see the Professor at Addenbrookes together and everything was moving fast and in the right direction. I’d read about the positive outcomes from a live donor and started to become excited about some certainty following such a long period of not knowing what was coming. The opportunity to move on from dialysis and start getting back to some kind of normality was on the horizon. We talked about dates and came away all feeling positive.

A week later, some final tests came through which meant the donor could not donate. We were both upset both for the same reasons but also for different reasons. Organ donation is a big thing to both donors and recipients, but I think that sometimes donors who cannot donate have a tougher time mentally. The results meant they could not donate even to the shared scheme so we were back to square one. 

It was now mid-July, and I was feeling pretty low with the world on holiday and my hopes of a donor fading.

Then it happened, Sunday the 31st of July at 02:52, I had the call from the team at Addenbrookes to say they had a kidney for me and to come to the hospital as soon as possible. The kidney was from a deceased donor who was the same age as me and a “good” match.

After a spirited drive to Addenbrookes, I arrived around 04:00 and got onto the ward at 08:00. We waited for the kidney to arrive and at 16:27 (I will always remember these times), I went down to the theatre. I was back on the ward for midnight and left the hospital six days later to continue my recovery at home. 

The whole team at Addenbrooke’s was amazing, I will never forget them and shall forever be thankful for the care they showed me. It was emotional and overwhelming to see levels returning to those of nearly 15 years ago. I was a gibbering wreck every time the doctors made their rounds. This small gift of life was already removing toxins from my body.

Recovery went well and I was back to work three months later. My new kidney was already giving me freedom that I had taken for granted before. Just the ability to go somewhere without thinking about dialysis or fatigue, I felt so much better and this amazing gift was giving me a new lease of life.

I am now two years post-transplant and incredibly grateful and fortunate. I’ve travelled, changed jobs, moved house - normal things taken for granted. I’ve been able to give a little bit back by attending several presentations and meetings, as well as volunteering as a NKF Home Dialysis Peer Supporter.

One of the best moments was meeting the mother of a man my age who had decided to donate his organs at his death. His donation meant that many others could go on and live. As I don’t know the lady who donated to me, it was lovely to share both sides of the story to the nursing team at Lister Hospital and it helped us both understand each other’s position.

My transplant has been everything to me and my family. It’s more than I had ever dreamed of. Seeing and feeling the physical and mental changes are amazing, the changes have also been noticed by family and friends.

Having a kidney transplant means so much to me, I can’t begin to share how grateful and lucky I feel. I think of my donor a lot and of their family, and have written to them to convey just what this unique gift and second chance at life means to me and my family. It’s so hard not being able to thank my donor, to tell them just what a difference they have made to me and my family. 

A transplant is not just freedom from dialysis, it’s the chance to have a new normal life in what I call Life 2.0. Dialysis can only do so much for kidney disease patients, there are things only a kidney can do and I will be forever grateful. Losing a loved one is very hard, but knowing they can make this gift to give others life is amazing. Please speak with your loved ones about your choices and leave them certain.

Back in February 2022 when I was feeling low and uncertain of the future, I set myself a goal to raise awareness of kidney disease, what living with PD meant, raise awareness of the wait that people have on the list, and also raise some funds for my local Kidney Patient Association (LAKPA) who had been supportive of me.

The goal I set was to walk 1,000 kilometers by the end of 2022, to recognise the average wait of 1,000 days that people wait for a kidney in the UK. I also wanted to raise £1,000 for the charity.

By the time I had the call, I had walked 700 kilometers on PD, and raised nearly £3,000 for the charity. I walked the last 300 kilometers with my new kidney which seemed very fitting.

I have kept my journey going since and you can follow along here: www.facebook.com/Nicks-Kidney-KMs-107309778568068/ or follow my Instagram account: @nickskidneykms