Meet Kidney Donor Athlete, Leah!

Leah’s bio

Leah Stewart, from Christchurch, New Zealand, is passionate about social change, disability advocacy, humanity, nature, and adventures. Leah is a keen mountain biker – in both cross country and downhill. Leah also enjoys trail running, hiking, kayaking and plays football for her local club.

A Bachelor of Communication Studies graduate, Leah majored in Television and Screen Production and was awarded the AUT Vice-Chancellor’s Scholarship in 2014. Leah’s short film ‘The Voice’ screened at film festivals both in New Zealand and internationally and won three international awards. The 12-minute documentary, titled The Voice, candidly explores the social obstacles faced by three very different individuals who use communication devices.

After working in documentary film, Leah put her film career aside to focus on her number one passion: helping others. Leah now works in the disability sector as a complex care specialist and rehab coach for adults and children with complex disabilities, including cerebral palsy, brain injury and complex mental health.

In 2017, Leah made a life-altering decision to donate her left kidney to a school friend who had end-stage renal failure. This was one item on a bucket list for life she wrote when she was 16. Leah’s service to others saw her win ASB’s Good as Gold award in September 2018. Leah also won an Attitude Award in December 2019 for her work in the disability industry.

Travel to Antarctica was another item on Leah’s bucket list which she had the opportunity to tick off after being selected for the 2019 Inspiring Explorers Expedition. Leah traveled to the Antarctic Peninsula with the Antarctic Heritage Trust to capture video and virtual reality content while sea kayaking and working to conserve, share and inspire the spirit of exploration with fellow young people.

Leah is the co-founder of the inspirational YouTube channel ‘Wheely Wacky Adventures’ combining both her passions – disability and filmmaking. The series follows the thrill-seeking adventures of Leah and her best friend Alicia, who was born with cerebral palsy and uses a wheelchair. Channel link: www.youtube.com/c/wheelywackyadventures

My Donor Story

In 2016, my sister Kori told me that a girl we both knew from high school needed a kidney transplant. Her name is Denny. She was in the same year level as my sister and Denny and I were both senior prefects in 2013, so I often saw her around school. I knew that Denny had health challenges but I had no idea what it was she was going through.

Kori asked me if I would consider going with her to be tested to see if either of us were a match. I didn’t think much about it at the time and agreed that I would get tested. I had always wanted to donate blood and had previously thought about the idea of donating a kidney or at least being an organ donor on my driver’s license, so I was open to the idea. My sister fell out of the testing process early on because of her own health issues, and once I’d met the donor coordinator and started the blood tests, I felt really invested in what I was doing.

Denny and I decided to meet for coffee as apart from going to the same high school, we didn’t really know each other all that well. We clicked instantly and I just knew that I wanted to help her. I continued on with the testing process, which took around 12 months. Unfortunately, Denny and I weren’t a match. In fact, we were the strongest ‘not a match’ you could have. I had already decided that if I weren’t a match, I would try to donate to Denny through the cross-exchange programme, so we ran straight ahead with that.

The idea was that pairs of unsuitable donor/recipients would enter a pool to try and find a cross-matching pair. The same day that our details were entered into the database, we got a call. ‘This never happens’ they said, but they had a match instantly. It was such a mind game because I had gone from being totally invested and mentally preparing myself for this major surgery, to then be told I wasn’t a match and that it could be months or years of waiting in the database, to then get a call on the same day and told that our surgery date was less than two weeks away, and it was on my Mum’s birthday! Sorry Mum! We never found out the details of the matching pair, but we later found out that they were both from Wellington – a city on the other side of the North Island. My kidney matched with someone on the waiting list, and Denny matched with an anonymous non-directed donor. The thought of all these kidneys flying around totally blew my mind! My kidney was going on a plane to Wellington without me!

Prep day: 23rd July 2017

The day before the surgery was a day of waiting and more waiting. It was the longest day of my life and the day that everything became pretty real. I was shown to my hospital room and given my hospital bracelet and gown and a few final forms to sign my kidney away. It was a really weird feeling lying in a hospital bed feeling totally healthy and well. Denny and I were pretty much left to our own thing for most of the day so we watched some TV, tried to nap, wandered around the hospital, and tried to eat some dinner before we had to be nil by mouth. My nurse told me I had to drink two litres of water that night so I was constantly in the bathroom peeing through the night. I struggled to sleep anyway which wasn’t a surprise.

Transplant day: 24th July 2017

As the sun fell into my room in the morning I remembered I wasn’t in my own bed at home and saw on the clock that I had about an hour until I was going to be taken to theatre. The team came to prep me and take me to pre-op. Denny and I said our goodbyes and wished each other well. It was really strange to be in pre-op around people who were unwell who seemed like they were all looking at me trying to figure out what might be wrong with me. Throughout the whole process I never really felt nervous and even waiting in pre-op, I was more excited than anything. I met the nurse who was about to fly with my kidney on a commercial flight to Wellington, which I found super fascinating! I was taken into theatre and I chatted away to the lovely team of theatre nurses while they tried to get my lines in. 30 minutes, 2 bruised arms, a lot of blood, and an ultrasound later they finally had me all hooked up and ready to go. The last thing I remember I was chatting away, and then the surgical team worked their magic to remove my left kidney and do as little damage to me as possible.

I remember in one of the many lead up appointments one of the surgeons said to me that it is much more nerve-wrecking for them to operate on donors than recipients because their rule is to ‘do no harm’, which isn’t really true when you take an organ out of someone that didn’t need to lose it.

The surgery took two and a half hours. The first thing I remember was being half-asleep in post-op and trying to take the oxygen mask off my face. There were a few people hovering over me telling me to stop touching it. The lights went out again and the next thing I remember I was by myself trying to talk and get the nurse’s attention but I could only manage mumbling sounds. I was in a lot of pain and felt really uncomfortable. The nurse came over and welcomed me back to planet earth. I spent about an hour in post-op waiting to go back to my ward. They told me that the nice big room I had to myself had been taken and I would now be sharing a room with three other ladies. That’s OK I thought, it would be nice to have some company for the next few days.

So off I went to the ward where I found some visitors and lots of chocolates, cards, and flowers. I dozed for the next few hours while they tried to get my pain under control. I soon realised if I lay completely still then the pain wasn’t too excruciating. The worst pain was actually in my left shoulder, from the gas they use in the surgery they said. The day went by pretty slowly as I waited to hear how Denny was doing.

“I sat there patiently waiting… I can’t believe it, did I just donate my kidney?”

Recovery day two and three:

I drifted in and out of consciousness… After buzzing the nurses over and over again about my pain, I finally found out there had been some kind of mix up that resulting in me not getting the pain pump I was supposed to come out of surgery with. That explained the pain. After hours of waiting they eventually brought me the pump but it didn’t help. I think I had gone too long without it.

The rest of the night and the next few days all blended together. I didn’t fall asleep for four days. I felt I was on the verge of going crazy and I missed my sleep so much. No matter how hard I tried or how many pills they gave me, I just couldn’t fall asleep. I had a few problems with the catheter getting blocked and when they took it out the first time I couldn’t pee so they had to put it back in and try again later.

Denny and I managed a couple of visits to each other’s rooms. It was funny when I got up to go for walks, I would have a burst of energy one minute and then by the time I got to Denny’s room I was absolutely exhausted and needed a wheelchair to get back to my room. It was amazing to share the time in the hospital with Denny and go and visit her and catch up on the latest pains, updates, and hospital gossip.

Day four:

On Thursday, the fourth day, an angel nurse came to visit. I still don’t know if she was real or a figure of my imagination, but she sat by my bed for an hour, talked to me in the sweetest voice and reassured me what an amazing gift I had given. She told me that I would start to feel better soon, and just to close my eyes and fall asleep. And so I did. I closed my eyes and I fell asleep. When I woke on Friday morning I felt amazing, instantly better. It’s amazing what a bit of sleep can do!

Leaving the hospital:

On Friday morning my nurse said that I could go home that day as long as I could pee and poop after the catheter was out. A very determined me managed to do just that so I got the all-clear to go home with a bag full of lots of different pain and anti-nausea medication. I was still quite sore and couldn’t walk too far without help, but I couldn’t wait to go home and continue my recovery. I was thrilled to find out that Denny would also be going home that day. We said our goodbyes and sent each other on our way, ready for the next step of recovery. Nearly 10 months of tests and just like that… I was one kidney less, Denny’s health started dramatically improving, and someone else out there hopefully, was saved.

What was your activity level like before donation?

Before donation, I was fairly active. I have played football my whole life so that was my main focus. I played left wing for Bucklands Beach Football Club. I also enjoyed running a few times a week and the occasional hike in the Waitakere Ranges and Hunua Ranges in Auckland, where I was living at the time. But for me, my love for the outdoors and for pushing myself physically really kicked in after my recovery. There’s something about walking into a hospital knowing you’re in the best health of your life, yet surrounded by so many people that are fighting illness and poor health, that leaves you feeling that you owe the world more, that you owe yourself more, and that you take so much for granted that could so easily be taken away tomorrow. I knew that even though I could live a long, healthy life with one kidney with the lifestyle I had, I would be silly to not try and look after the little bean just that little bit more.

Slowly but surely my energy levels returned. It took a good five weeks before I felt like myself again, and a few more weeks before I felt like running and getting back into football. But once I started, I just couldn’t stop. Two years ago I was lucky enough to experience Outward Bound – a twenty-one day course of reflection and adventure – pushing you to your limits and beyond, in every way. The Outward Bound motto says ‘there is more in you’ and those have become my words to live by every day. On the final day of Outward Bound I completed my first half marathon – 21 kilometres through the beautiful rolling bush of the Queen Charlotte Track. As soon as I came home I signed up for my next one, and that was it, I had the running bug!

At the end of 2019, I moved from the North Island of New Zealand to the South, to be with my partner in Christchurch, a city bursting with life and adventure on the doorstep! I took up mountain biking and started on some of the well-known trails around the city – spending all of my spare time on the same tracks trying to beat my personal records. I started doing some more challenging and technical riding with river crossings, steep ascents, and descents and I constantly craved more!

My first mountain bike race was the St James Alpine Adventure Race on Saturday 18th January 2020. A 64km ride with 1389 metres of climbing through beautiful mountainous terrain, high country lakes, alpine meadows and subalpine beech forest in New Zealand’s South Island. I completed the race in 6 hours 17 minutes and I can tell you it was the hardest thing I’ve ever done in my life, harder than donating a kidney! But it only took me until halfway on the drive home to say that I would definitely do it again, and my training has continued on since then. As well as cross country mountain biking, I started getting some coaching in downhill mountain biking, at the Christchurch Adventure Park. This kind of biking is my new found love and I can’t believe I hadn’t gotten into it sooner! I love the challenge and the adrenaline of it all and I love that it’s an individual sport so you work on only improving and critiquing yourself to be the best version you can be.

At the beginning of March, I competed in my very first downhill mountain bike race – the annual ‘Diggler Downhill’ at Mount Hutt. I was one of only 12 girls competing and to be honest I was expecting to come last. My goal was to get to the bottom in one piece. I came 81st out of 88 competitors with a time of 3 minutes and 6 seconds. Not bad for someone who got into the sport just three months ago.

I’ve only just started riding Grade 5 (black diamond) trails and rode the course for the first time the day before the race, to see if I could actually get down! On the day, my confidence grew quickly with each practice run as I memorised the lines. I love a challenge and I love that for that short period of time on the course, you think about absolutely nothing else but where you place your wheels.

I was feeling great until my final race run, when I was taken out by a branch that fell in front of me near the top of the course from the rider in front, adding a solid 30 seconds to my time. I’d mostly managed to stay on my bike until that run so it took me by surprise. I got back up and flew down the rest of the track to make up as much time as I could, and I’m so proud of my effort! I finished with a massive smile on my face. I thought to myself this will definitely be the first of many more races to come. My confidence to finally take on the black trails that I’ve been avoiding at my local bike park has definitely grown. I’ve already ticked off a couple since the race!

Since the race though I have been mostly focusing on XC riding, as this month I am completing the Himalayan Trust’s Summit Challenge to climb 8848 metres of elevation – the height of Mount Everest – across the month to raise money to help remote communities in Nepal. I am doing a combination of trail running and mountain biking to complete the challenge. So far I’ve ticked off 5112 metres, with one week left to get the remaining climbing in! The link to support my fundraising page is here: https://summitchallenge2020.everydayhero.com/nz/leah