On marathons, Italian villages and kidney donation

Sometimes in life, you arrive at a big decision and it’s not very easy to understand how and why you got there. Donating my kidney to a stranger is not one of those. There were three very distinct moments that led me to the operating theatre on Friday 8th January 2021. Let me tell you about them.

I took up running accidentally in 2014. At a part-time job in a deli, I made friends with a customer whose name is Danny Bent, and he is still a friend to this day. He has created wonderful things in those years I have known him and is something of a celebrity in the running and adventure worlds. One thing he created was a workout group called Project Awesome. It was not at all the type of thing I would usually go to but, as we had coffee together one morning, he invited me to it (I think primarily to get numbers up in those early days when no-one had heard of it yet).

Against my better judgement, I went. And against my continued better judgement, I became a regular. I still am not sure how this happened, as I didn’t really like exercise, but I came back for the people, for the human element that made me feel good about myself and the world. The people I met there ran marathons. Right, then, I thought. If they’re doing it, I guess I should. They seem to enjoy it. I started running in my spare time, signed up to some 5k events, then 10k events, until a year later, I ran my first marathon.

The people I met at Project Awesome also did multi-day running adventures, the most notable of these being Anna McNuff, now also a well known name in the world of adventure running. Right, then, I thought. If they’re doing it, I guess I could try it too. I travelled to my favourite country in the world, Italy, set my sights on home, and started running back, a journey that took me 73 days and 1250 miles to complete.

Moment one

This is where I come to my first very definite moment on my road to kidney donation. At Project Awesome one week, a fellow attendee and friend, Alice, told me that she was donating her kidney. She didn’t know who to but it wasn’t important. She knew you could survive with one so she didn’t see any reason not to. This reasoning, this ‘why not?’ reaction to kidney donation, I now know, is down to brain make up and the amygdala. The amygdalae of an altruistic kidney donor have been shown in research to be up to 8% larger than the average. These two almond-shaped clusters play an important role in our emotional landscape and the empathetic responses of altruistic kidney donors is a symptom of this enlarged amgydala.

Moment two

Here comes my second moment. I hear her story and I think, “why would I not also do that?” That’s my amygdala taking over. I figured everyone would have the same response as me. Only when I heard other people saying it was a crazy thing to do, or that it was too dangerous, or that they would be too scared, did I realise that my response was different. If not everyone’s brains work how mine does, that means not many people actually are doing this. The thing is, lots of people do need to be doing this, because people are getting sick and dying waiting for transplants.

If I can’t see any reason not to, I should do it, I thought. It was decided then, although I still didn’t act on it. I was on the verge of moving out to Italy, after all. I went to live out there for a year and a half and had a wonderful time, learning Italian, eating Italian food, looking at art, listening to opera and generally living out all the clichés that you would imagine. I carried the idea of kidney donation with me but left it on the back burner.

Two months before I was due to come back to the UK, my cousin, who had had diabetes since she was 7 years old, got significantly worse. Her health was constantly in danger. To give just one example – after giving birth to her son, years earlier, she had suffered a heart attack at age 30. Eventually, it was time for her kidneys to get involved. They started to fail and things got pretty serious. She was put on dialysis and told that a transplant was her last chance.

I saw all this from afar, in Italy, and was reminded of my thoughts on kidney donation. But this wasn’t quite my third moment, not just yet. I sent her a message and offered her one of my kidneys. She replied that, actually, she was in need of both a kidney and a pancreas, which must come from a deceased donor and so, unfortunately, I couldn’t help her. After a lot of unsuccessful tries, she received the organs she needed and was on the road to repair and is alive and well today.

Moment three

I came back to live in the UK a few months later and got on with recreating a life here. One day, I had to go into London for something and found myself near Guy’s Hospital, where my friend Alice had donated her kidney all that time ago. Here comes my third moment. I offered my cousin my kidney and I was fully prepared to do that. Why would I not still offer it? Everyone is someone’s cousin. Does it really matter if it’s not my cousin? No, it doesn’t. I want to give someone my kidney and make them well, like my cousin is now.

With these thoughts in my mind and no better way to know how to start the process, I walked through the main doors at Guy’s Hospital and headed to the kidney department. Through the swing doors I went and noticed a reception desk on my left. There was a waiting room full of people in front of me. They all looked up as I entered and I felt suddenly a bit silly. “Hello, do you have an appointment booked?”, the receptionist asked me.

“I, uh, no, I don’t. I, um, I was wondering if, um, you want one of my kidneys? I, I want to donate one of my kidneys, please”

I mumbled stupidly, to her (and the waiting room’s) surprise.

“Right, ok! Just take a seat for a minute and I’ll get someone to come and chat to you about kidney donation.” A pleasantly surprised gentleman came out of a room nearby clutching some leaflets and approached me. Suffice to say, he didn’t just fish around in a drawer, find a scalpel and lop it out right there and then. The process takes far longer than that but, essentially, three months and lots of tests later, I was ready to go and the decision was still as simple as it had ever been. Why wouldn’t I do it?

There are four times during the year when they put together a list of everyone who needs a kidney and everyone who has offered to give one of theirs. We were coming up to the January list, which I was ready for, but I had decided to give a new sort of life a go, one in which I lived part time in Italy. My plan was to be there every year from January until March and then return to the UK for the rest of the year.

It was January 2020. I packed a couple of bags and went out to northern Italy, to the mountain village I love so much. I walked in the mountains every morning, taking my lunch to eat on benches with a view down to the sea, I taught English in the afternoons, I clamoured up to the 1000-year-old castle ruins at the top of my garden with a book and read until the setting sun stopped me, I ate focaccia, I improved my Italian. I did this all with a date in mind. On April 17th, I would go on the list and the hospital would start searching for a suitable recipient for my kidney.

Covid complications

2020, however, had other ideas. At the end of February, on what I thought would be a weekend visit to the UK, I was grounded. My life was grounded. My plans were kicked to the curb. I spent the next six months here in England, trying to piece together a life that was never meant to be. I was supposed to be in recovery from doing the best thing in my life, donating a kidney. Instead, I was vaguely trying to find work and repeatedly apologising to my lovely landlady in Italy for my stuff all still being in her apartment, months after my contract had ended. I eventually made it over there to retrieve it and got back into the UK eight hours before a new law meant I should have to quarantine on my arrival.

In September, I wondered again about my kidney. Life seemed to be making it’s way slowly back to normal (little did we know!), so I contacted Guy’s Hospital. Thankfully, the kidney donor programme, which had been shut down since March, was starting up again. The next list was due to happen in October and I could go on that one. Some of the tests have a time limit and mine had expired so we rushed to redo those ones and I was ready, for the second time, to donate my kidney. It was late October 2020.

Let’s go!

Life went up and down for everyone in the next two months, but generally seemed to be marching forward. In December, while walking into town one day, I received a phone call. “We’ve found a match for you. Your operation will be in January.” There it was. A real person was involved now (I didn’t realise at the time that actually five real people were involved). Someone out there in the world needed my kidney, just as my cousin had needed a kidney, and I was going to let the surgeons remove mine and give it to them. I imagined they were potentially in quite a serious situation at the moment. I imagined they were on dialysis. I imagined that maybe they looked how my cousin had looked at that stage, skin a little grey, the life gone from their eyes, exhaustion in every movement and breath. I imagined that maybe they were dying (I was later told that yes, they were dying before the operation).

Is excitement the wrong word for pre-donation anticipation? I just honestly can’t think of anything more superhero than saving someone’s life, except perhaps saving lots of people’s lives. In a world where real superheroes won’t fly in and save the day, the ordinary people around us who say yes to donation are saving lives, one at a time. This excites me beyond words.

It’s December, the pool that I am to be part of has been identified, a date has been set for 8th January 2021 which, by the strangest coincidence, is the ten year anniversary of emergency surgery I had on my colon. This emergency surgery makes my kidney donation rather complex, with one surgeon using the word “creative” to explain the type of solutions they were coming up with. Christmas approaches, I am told I have to self-isolate from Christmas Day as I need to be completely healthy pre-surgery. I am also told that no visitors will be allowed during my hospital stay and that I must self-isolate for a further two weeks on my return home. I have a day where it feels overwhelming and I sit on the library steps, crying, then go home with none of the groceries I needed.

Then I wake up the following day, remember that I am a fully-functioning adult and this is a choice I made and I start planning. I stock the cupboards, I tell my workplaces what to expect (six weeks absence), I get a pile of books ready and hunker down. There is a mission at hand and I am determined to complete it. Someone out there needs my kidney and I must stay safe and healthy and virus-free.

The news started to report worrying changes as Christmas approached. I waited on tenterhooks to see if the kidney donor programme would be closed down again. My operation was only three days away when I received a phone call from one of the surgeons. “Some people on the team think that your surgery shouldn’t go ahead on Friday.” It seemed that there were worries about the emergency surgery I had a decade before. They were worried about complications it might cause with my colon, complications that might arise only after I returned home, which would then send me to the A&E department of my local hospital, which was not a virus-free environment. They suggested pushing the date back by a month. I stood my ground.

“I know I could get infected if we go ahead, I’m not ignoring the risks. But I have been waiting a long time. I have been ready for a year. I would like to go ahead, if you all decide that it can.” I waited anxiously and the next day, I received a call to say it was still happening but had been moved to private hospital, for safety and so I could have a private room. The co-ordinator who had been my contact throughout all of this called me to wish me luck and say that it was likely she would be redeployed very soon to help with the pandemic. The very next day, in fact, she was, and her workload was taken on by another woman, who a day later, after speaking with me, was also reassigned to elsewhere in the hospital. They were being picked off so rapidly, I felt a rising sense of panic that the surgeons might be reassigned before we could go through with it.

Friday morning arrived and with it, the surgeons. They came to my room to check I still wanted to do it and it was the most certain yes I have ever said in my life. After a few phone calls to the surgeons of the other people in my pool, we were all ready. I walked down to theatre, hopped up onto the bed in the anaesthetist’s room, signed a few more consent forms and was prepared for surgery.

Success 🎉

Three operations took place that morning (the last ones before the situation took over and further operations were cancelled). My kidney physically left my body at midday and started its journey to its recipient, somewhere outside London. By late afternoon, three more operations were complete and three people who desperately needed them, had healthy functioning kidneys. The bargain had paid off.

I was told the next morning that my kidney had transplanted well, the recipient was urinating successfully and all the numbers that represent good kidney function were looking as they should. They now have a kidney function of around 50-60%, which is more than sufficient for a healthy life. By comparison, a person with serious renal failure could have only 3%.

I was in hospital for three days, sat on the sofa for one more, then got back to normal life. Running and attendance of Project Awesome are a little way off yet. It will take six weeks, minimum, to really recover and, to be honest, perhaps it’s best that I can’t be with those running friends again for a little while. I worry what I’ll end up following someone into next!

– Laura Maisey