Julie’s Story

Hearing my sister-in-law at the other end of the phone weeping with joy, relief and gratitude made it all worthwhile. Six hours earlier at Guy’s Hospital in London my right kidney had been removed from me, placed in an ambulance, whizzed over to Great Ormond Street Hospital, and was now functioning and producing urine for her 14-year-old son.

On Tuesday 29 March, 8:00am, the anaesthetist draws back the curtain of the hospital bay, and sits on the end of my bed. Our five minute conversation ends with her asking me if I have any more questions. I reply “Just look out for me” and I flop back into my pillow as if I’m fainting. I don’t know why I do this, it must be the absurdity of it all. Everything over the last two and a half years has been building up to this day.

What I didn’t know at this stage was that a non-blood relative person could even be a ‘match’ for someone with kidney failure. My husband’s nephew had been born with very bad kidneys, his parents always knew that he would have to have a new kidney during his childhood, or he would be facing a life of dialysis by his teenage years. His parents had already put themselves forward to donate their kidneys, but had been ruled out as not being strong enough candidates. What I also didn’t know was that to be eligible for kidney donation, the donor has to be a tissue type match and a blood match to the recipient. We all have a set of 6 DNA markers (3 inherited from our mother, 3 from our father). A biological parent shares 3 out of 6 markers with their child, which is why family members are usually the best matches for donating.

In September 2019 we were waiting to get my husband’s blood test results by phone from the hospital to see if he could donate. We had agreed with the hospital that I would take the call, as my husband’s fear of hospitals extends to having to talk and hear results over the telephone. The nurse said “Hi Julie, I know we agreed that I could tell you the results for your husband, but I really need to talk to you, about you…You are an incredible match”.

From this moment I started to wrap my head around donating one of my kidneys. The hospital arranged a day’s worth of further tests to check my kidneys and body in detail, X-rays and MRI. All tests came back as me being in tip-top condition to be able to donate and live normally with a single remaining kidney. The hospital also referred me to a counsellor (who was independent of the kidney department) so I could talk through any fears or feelings I had about this unexpected choice; being a Living Kidney Donor.

The pandemic changed the priority for kidney donations, for all hospitals. All appointments were cancelled as the medical teams and departments were redeployed to help with the COVID-19 outbreak. By April 2020, still knowing how sick my sister-in-law’s child was, I made a decision to focus and keep up my fitness and healthy diet, just in case I received an emergency call to come into the hospital. I started the Couch To 5K running app, running having never been in my exercise remit. I hated it! But, I had a greater goal, which kept me on the straight and narrow. I also stopped eating high fat and processed foods. The pandemic had forced a sedentary lifestyle on us all, and I didn’t want all my preparation going to waste.

December 2020 came and went, I attended an annual check up to see that I was still in good health. December 2021 came and went, and I again went to the hospital for a series of annual tests. I found these check ups reassuring as they confirmed that all was still good for me to donate my kidney. I used to ask each time “Is there anything I can do, or eat, or not eat, that would make things better for donation?”. The response was always “Whatever you’re doing, keep doing it. Don’t change anything.”

We knew that my sister-in-law’s son was deteriorating, he was losing weight, he had no energy and his kidneys were failing, he was existing on 8% kidney function. I was given notification that the donation would take place anytime from January 2022. At this point I decided to give up alcohol totally. I got up, I ran more, I trained on a static bike and made sure I was drinking at least two litres of water a day, all the while I had my focus that I was making my kidneys as good as they could possibly be.

The date was given for 29 March 2022, I had 9 weeks notice. I started to ask past kidney donors what you need for the hospital stay, how I should prepare for life back at home once I return after donation. My three essentials for taking into hospital were a small cushion (for protecting your stomach area, especially for the car ride home with a seatbelt), a long two metre charger lead (for any devices you wish to take in with you) and a peg! The peg is so you can peg your long charger lead to your bed, so it doesn’t drop onto the floor. You don’t want to be bothering nurses to pick up your charger leads. And once you return home have only healthy food and lots of rest. Sleep when you feel like it.

For me, arriving in hospital was very strange, I was totally fit and able, but as a donor you are placed on the renal ward with extremely sick and immobile patients. You feel awful being waited on by staff, but you are not allowed to wander around because COVID-19 procedures were still in place. I arrived in the afternoon, signed in, was weighed, allocated a bed space, blood pressure checks, then asked to choose from a menu what I wanted for dinner later. I got myself changed into bed wear and sat playing with my phone and reading. I wasn’t thinking about too much at this stage, the setting was totally new to me so I was pretty distracted. The surgeon came by early evening, asked if I was OK and if I had any questions. A large arrow was drawn with a fat pen on my lower stomach, on the right-hand side – denoting which kidney was to be removed. I was also visited by the Specialist Kidney Nurse to check I was still alright, and that I was happy to proceed with donation. She asked me what coffee I liked, explained to me what would happen the following morning before the operation, and then what would happen and where I’d be after the operation. She said she would call my husband once my kidney was out to reassure him all had gone well, before I was even awake.

I listened to the Miami Open tennis during the night, then watched two episodes of Stanley Tucci: Searching For Italy, until he got to a restaurant in Rome sampling some offal, then I had to turn it off. Next it was the World Service radio for the rest of the night, in and out of sleep. I was grateful I didn’t sleep much because I was so relaxed (or rather exhausted) by the time the anaesthetist swung by at 8am, and I had no nerves. I was only worried about other people thinking of me for the next four hours, I knew I would be unconscious soon, then I would wake up, it would all be over.

It is a year since I became a Living Kidney Donor and I have absolutely no regrets. I have had no post surgery problems or ill effects since donating. I didn’t wake up alone, I woke up in the Recovery Ward with a sweet nurse talking to me and stroking my hair, then the Kidney Nurse appeared and said she had already phoned my husband to tell him I was OK. I was then handed a phone to speak to him. The next morning the Kidney Nurse bought me ginger biscuits and a lovely hot coffee from outside the hospital, I really appreciated this.

After a six-month total break from intense exercise, I am back to full fitness – cycling, running, doing weights and swimming again. I didn’t tell many people that I was donating a kidney, because there had been so many false starts with the operation date and I didn’t want to tempt fate about it happening or ‘big myself up’ in case it was called off. But now it has passed successfully, the 14-year-old boy I donated to is thriving, with such a change to his life. My motivation was to allow him his teenage years, doing teenage things, with no need for dialysis.

I am very proud of myself. I feel strongly that I have served my purpose on this planet, and I have done a good thing. When I was talking to a friend, telling him what I’d done (he was flabbergasted that I had donated a kidney to someone who was not a blood relative), I narrowed it down while chatting that it may have been the Blue Peter TV appeal back in the 1980s that had influenced me. I always remember seeing their fundraising drive for dialysis machines. It must have lodged itself somewhere in the back of my mind as a child, sympathising on what a life reliant on a machine would mean and then, as a healthy adult, knowing what a difference I could make for one person by a selfless act, with no detriment to my own body.

Living Kidney Donation – think about it…