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Around three million people in the UK have kidney disease

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Kayleigh, the stranger who gave me my life back by Louise Sach, transplant recipient from living donor

25 June 2018

This is me, Louise Sach, shortly after I was diagnosed with chronic renal failure. I was age eight when my parents were told that both my kidneys were only working at around 40%, both small, functioning poorly, and heavily scarred.

 

Louise Sach
Louise Sach

I was never going to make it to adulthood with that set of kidneys. I remember being told, but not really knowing what it meant. My mother describes how I didn’t cry, I just lay down on her lap and lay still, silent, listening to the conversation and hugging her. I remember being taken to see Beauty and the Beast in the theatre afterwards, watching Belle dance in her stunning yellow dress and dreaming about becoming a princess.

Being a child, I don’t think I really understood the gravity of the situation. I had no idea then, what it meant. That I would never be ‘normal’, and I would never truly know how that feels. I didn’t know yet the agonising years of tiredness and pain that kidney failure would cause, the heartbreak, the sickness, the hours and countless hours spent in waiting rooms, tests, consultant meetings. My dad and the endless emergency rushes to A&E with me screaming in pain because of infections. The years of antibiotics, stronger ones, wait, stronger ones again. My mum crying because she didn’t know how to fix me, I felt I was broken, she worried she grew me wrong, us both not believing each other when we said to one another we were perfect. The pain of never knowing ‘why’. If I could count it all up it would be years of torture. But despite this, what my parents have shown me my whole life is that you make of your life what you put into it. They taught me to follow my dreams, and believed I could reach them. They never let me doubt myself, and celebrated every accomplishment, and remained proud of all I had achieved despite my difficulties.

Growing up with kidney disease

At age eight what I also didn’t know was how strong my parents and the journey would make me. I wasn’t able to join in activities with the other kids as I would get worn out and throw up. I would lose weight, and need supplements, vitamins, a horrible concoction that had to be added to my drinks which made them taste disgusting but so that I would grow. But I did grow. Emotionally, physically, mentally – I grew. The tiredness increased, the nausea increased, but so did my perseverance, my drive, my love of life and the constant battle for success. I became strong, somewhat stubborn, but I would never let anyone see me as different.

I came out of school with 11 GCSE’s, followed up with 3 A-levels, went on to university and gained a degree in BSc Psychology, a PGC in International Business and finished with a CIPD HR qualification. I met my now fiancé at University, we travelled the world – we worked for a year in New York then moved to London. I knew what my dreams were and I was determined to achieve them. With careful management, and a lot of luck, I made it to age 28 before my kidneys finally said ‘Louise, enough is enough’ and began the plummet down from 28% to 13% during 2017. It was throughout this year that my friends and family would offer to become my donors.

Finding a donor

In September 2017, it was confirmed that my last three potential donors were not compatible on blood and tissue match. I had my mum running in the paired kidney exchange, but we hadn’t made the cut off and the next run was not until January 2018. I had now had all of my best friends and closest family tested, and we were left horrified and shocked at the news that, despite knowing for 20 years this time would come, the time had arrived, and I had no kidney donor. I was to start consultation for dialysis, I joined the deceased donor list, and I was to wait. That long, unpredictable, terrifying wait – not knowing what would happen, jumping every time my phone rang in case it was ‘the call’, terrified to go anywhere loud in case I didn’t hear it. Scared to sleep.

I remember missing a friend’s birthday party, because I was too exhausted and drained to even consider trying to get dressed and put a face on, let alone making the hour commute through London to the event. I remember sitting on the sofa, gazing out the window, saddened at the prospect that this may be my life now – too tired to hold a career down, too strained to sustain my friendships, too weak to be able to have a family of my own. As I gazed out of the window and started to watch the sun set on another day of having done nothing, but being exhausted, I decided that no – this is not who I am and I will not let this define me. This is not who I have ever been since I was diagnosed as a little girl. This is not what my parents taught me. I may not be able to do all of the big things, but I can still enjoy life.

Missing out

So, I drove up to the local viewpoint and sat, alone, watching the most beautiful sunset over London. I realised in that moment that whilst I may not be able to join in everything, I don’t have to miss all the beautiful things in life – and had I not had this disease I may not have been the 28 year-old sitting in on a Saturday night, able to enjoy the beauty of a sunset, able to enjoy the little things, and see the beauty of the world through the darkness. Ever since that moment I decided that, yes, maybe I needed to balance my life more, but I always have - I wasn’t going to give up or give in. Never from that moment have I ever doubted myself since.

I started a personal Instagram and Facebook page, the former was private - to connect with like-minded kidney patients, to share stories, ideas, support, and motivation. The latter was a later development, having been sparked on by two unexpected contacts who I had met online; Richie Sully and Lisa Emmott. I met Richie as he had been a former stranger to kidney recipient Rob Leibowitz, having met each other as Rob walked around Disneyland wearing a t-shirt boldly stating he needed a kidney. Richie saw a post of this online, offered, and the rest is history! I was really inspired by this story one day so I drew a doodle and sent it to Richie to say thanks for all he has done to provide hope to people like myself. Richie introduced me to Lisa, whose husband had a kidney transplant and she was an advocate for raising kidney awareness. Combined, they helped me to start my Facebook page, and in January 2018 I finally gained the confidence to post online and try to seek a kidney donor.

It was from there that I made my first Facebook post, outlining all of the problems I had, the story so far, how I needed an O blood group kidney donor, to try and raise awareness for kidney donation and, the unexpected possibility that someone may be willing to offer me theirs. My first post had over 16,000 views!

Wearing a disguise

The thing with kidney failure is that you wear a disguise. People don’t look at me and think ‘she looks really sick’, so it’s easy to hide behind the mask and not to admit that you have struggles. Making that first post was terrifying - knowing that everyone I have ever spoken to would know that I’m faulted, that I’m struggling, that I’m weak. Admitting that to myself was one of the biggest hurdles, but after posting, I quickly found the overwhelming support from old friends, colleagues, people I had grown up with – and people I didn’t even know! My phone exploded with messages of support, and after only a week, I had received 29 offers for kidney donation. The reality is many of these were abroad, the wrong blood type, not healthy enough, or had their own complications. However, there was one lady who messaged a primary school friend, Kai Addams, who had shared my post. She already knew she was O blood, was age 32, had no health complications…she was a stranger, but we messaged for hours and before I put my phone down for the night I knew she was genuine, sincere, and more importantly, I felt a connection. I felt I had made a friend. I felt excited. Her name was Kayleigh Wakeling, and unbeknown to me at that point, she was to become my kidney donor.

Louise and Kayleigh after the transplant surgery
Louise and Kayleigh after the transplant surgery

Getting to know Kayleigh

We chatted every day. We got on like we had known each other for years. Both of us are very open people, and shared everything about our lives with each other – there was no hesitation, no awkwardness, it was like talking to one of my best friends. I trusted her with my life. I put Kayleigh forward for testing and her preliminary tests were confirmed for February 2018. I went to Guy’s and St Thomas’ Hospital, London, where I would meet her in person for the first time. Walking down that corridor to the kidney clinic made me feel so sick. I was so scared. Here I was about to meet a lady who might save my life, yet I have never met her. What if she thinks I’m weird? What if she tries to force me for money? Why is she doing this? Am I worthy? She has travelled for 1.5 hours and paid for a ticket to be tested for me, what if I’m not what she expected? It was the most terrified I’d ever felt. I walk into the kidney clinic barely even knowing what Kayleigh looks like. What if she doesn’t turn up? What if she sees me and leaves?

A minute later and a woman comes bounding through the double doors with the biggest smile. She shouts ‘Lou!’ and immediately gives me the biggest hug. We sit chatting about life, how I’m feeing, how she’s feeling, how our family are feeling, how weird this all is but how right she feels it is. She is adamant. I admire her so much already. She is called and has her tests, and takes them all so calmly, then we go for lunch and chat for hours. As she leaves to get the train she smiles and says ‘remember – I’ll see you soon!’ and as she walks away I think to myself, ‘I hope so, but if nothing else I’ve made a really good friend’.

Two weeks later and Kayleigh calls. ‘I’M A MATCH!!!!’ she screams, crying down the phone. We both cry. I’m in hysterics. Four months later and we have completed all the health, legal and surgical assessments. Kayleigh is confirmed as being my kidney donor, with the operation booked for 1 June 2018. We were both there for each other every step of the way. The tests were long, but not painful – the hardest part was the legal assessment where you have to prove how you know each other. We evidenced all the times we had met on the run up to surgery, the Facebook page and how Kayleigh had contacted me, how I had highlighted a number of times that there was no pressure, and that on my page I had clearly stated legally payments were not permitted.

Kayleigh and Louise
Kayleigh and Louise

Kayleigh: “Everyday I wake up and I think of Lou, and how she’s feeling today. When we were in hospital we had beds next to each other and I would wake up and look over at her and you would see small changes, like her skin tone changed colour, she started getting brighter, her eyes got a twinkle to them and every day you think, she’s just getting that little bit better, stronger, brighter, and that’s because of me and it’s the best feeling. I hope I can inspire somebody else to think about it and save somebody else’s life”.

Louise: “Going through this experience with what was a once a stranger, but now such a close friend, has been such a phenomenal process. I am so grateful for Kayleigh offering to give me my energy, my smile, and my life back. I thank her every day, but it will never be enough”.

Kayleigh and I are now post surgery, and really keen to help others consider our story. We’re raising awareness about live kidney donation through the media, radio and campaigning for funding and support for Kidney Research UK. This year we will be marking our one month kidney-versary by attending the London Bridges Walk on 1 July, as cheer volunteers. We will be sitting at the finish line making noise for all of the patients and supporters who help support and save lives! My wish is that there are more Kayleighs and Richies in this world, and that with awareness we can find more donors to save lives, raise awareness so people can be diagnosed and cared for earlier, and more funding to help research and find a cure.

Finally, what I have learnt is that Disney is right; from watching Beauty and The Beast at age eight through to my ‘kidney’ doodle (age 28) there is a hero out there, you just have to hope and believe.

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