Nina Nannar, ITV arts editor, shares her very personal story about her husband Steve, and how kidney disease impacted their lives.
My name is Nina Nannar, and I’m a Kidney Research UK supporter, like you. I lost my husband, Steve, to complications caused by kidney disease recently. I’d like to share our story, because sharing stories is what I do for a living, and I know the power of stories can change lives. My story has a sad ending, but I hope it will help show you how utterly amazing you are in supporting Kidney Research UK, and the difference that your gifts make. Here we go…
Steve and I met at Machu Picchu in Peru in 2000. I had volunteered to do the long trek to raise funds for charity. There was a group of about 40 of us including Steve, who was from New Zealand. Walking at that altitude, there wasn’t much oxygen around, and he would later joke that while most people were gasping for air, all anyone could hear was me talking.
And I’m afraid that’s true. I didn’t do any preparation, I didn’t do any exercise, but out of the group,
38 people got really sick, and I was one of only two that didn’t. So I nattered my way up and I’m sure he thought, “Oh my God, this woman talks a lot.” But we connected immediately.
Steve’s outlook on life was shaped by the health issues he’d had to put up with from a very early age. He was born with reflux – a problem with a valve in the ureter that allows urine to travel the wrong way, from the bladder back into the kidney. This is something that doctors can easily fix today. It can be spotted on a scan and operated on straight away. But the doctors didn’t spot it in Steve.
Toxins were damaging his kidneys
His mum in New Zealand continually took him to the local surgery and would say, “He’s putting on loads of weight and we don’t know why.” And the doctors would say, “Well, he shouldn’t eat so much.”
But he wasn’t eating so much. The problem was that some of the toxins his kidneys were supposed to be expelling, were going back into his kidneys, slowly damaging them.
Over many years, these toxins built up until, in his teens, Steve collapsed at a party. He was rushed to hospital and almost died. The doctors managed to save him, and finally his kidney problem was diagnosed. They told Steve that one of his kidneys had completely packed in and the other was barely functioning. It was too late to save his kidneys.
Steve had to begin dialysis treatment immediately. A haemodialysis machine took over the job of his failed kidneys. It was a brutal regime of eight hours on the machine almost every day.
Steve had big plans for his life, but dialysis meant he had to put everything on hold. He was most devastated to have to stop surfing. He was a surfing fanatic. But despite the huge disruption to his life, and the ordeal of dialysis, he stayed positive. In photos his parents took of him at the time, he’s always sticking both thumbs up and he’s always smiling.
I remember saying to him, “God, you missed out on so much of your childhood and while all your friends were going off to uni… You missed out on all of that.” But he said that he just had real faith that it was going to be all right and he was going to get better.
New Zealand is a small country, and five decades ago the population was much smaller than it is today. So the odds of Steve getting a compatible kidney transplant were slim.
The special phone call
But then one day, after three and a half years on dialysis, Steve got a phone call from his doctor, who said, “How’d you fancy a kidney?” And Steve said, “Yes, please.”
That kidney ended up being a perfect fit for Steve, and he was so, so grateful for it.
When I met Steve, that astonishing kidney was still going, and it kept going for a long time after. He was constantly told how unusual it was for a kidney to last so long: kidneys from deceased donors usually fail in 15–20 years, Steve’s lasted for 30 years.
Anyway, so a week after surgery he went home and started planning his big trip with his surfer dude mates. His life began again.
Coming so close to death informed the rest of Steve’s life. He was so happy to have every single day. Sometimes that’s a cliché, isn’t it? But it wasn’t with him.
Steve's positive outlook on life
Looking at Steve, you’d never know he’d been so ill in his childhood. As an adult, he was very active. He was a garden designer and always outside. He was a real handyman, so he’d always be going around to friends’ houses and helping them out with things they needed doing, not just the gardening. He was the go-to person for everyone. When we used to go camping with friends, Steve would be the one with the toolbox going around everyone’s caravans, fixing the skylight, fixing the water, fixing the fridge.
Steve meditated every day. He loved the simple things in life, the colour of a flower, the big blue sky. I know it sounds really corny, but this is the absolute truth. He was a very amazing, gentle person who was so grateful to be alive.
But even Steve’s miracle kidney couldn’t last forever. There’d be some days as the kidney was wearing out when he’d wake up and feel a bit nauseated, or unusually tired. Every three months, he would go off to the hospital to get his creatinine levels measured. This is how the doctors tell how well your kidneys are functioning. Creatinine levels were a regular topic of conversation in our home. His results were good a lot of the time, but still, every three months, a bit of you would hold your breath and hope.
Steve and I have a daughter together, Mimi. He was an utterly amazing dad. Mimi wouldn’t have been aware that her dad was any different to anyone else really, apart from the fact that every morning he woke up and had to take a huge number of medicines. We didn’t even feel how profound it was that those little pills were keeping him alive. He would do it in a very casual way. He didn’t show any fear, or any notion that everything was not going to be perfect and all right. So we took our lead from him. He was very positive. And so were we.
But then we had a really tough year. In 2009, my dad died, and then Steve’s doctor told him, “Well, your kidney is dying now, we think.” It had dropped to about 33% function. The time was coming when he would have to go back on dialysis. That was one of the very few times I’ve seen him cry.
De-stressing life
We were living in central London, and we made the decision to de-stress our life. We thought that breathing fewer toxins, having good air and all that sort of thing would help Steve’s kidney, because kidneys don’t like stress.
We’d been going to Norfolk on holiday for a while and had fallen in love with the coastline. So we just decided, “Okay, let’s just move to Norwich, and have the sand on our feet and big skies and swimming in the sea and everything.”
We moved at the end of 2011. It was our big adventure. I continued to work in the ITV newsroom in London, so I became a commuter. I wouldn’t say my stress levels decreased, but it worked for Steve, and it was good for our daughter. So it was good for us as a family, and we absolutely loved it. We got a nice garden for Steve to potter around in, and he was so happy.
Despite the doctors saying in 2009 that Steve’s kidney was starting to fail, it managed to keep going another seven years, until 2016. I feel pretty sure that leaving the stress of London had an impact. We had a gentler life here and I really do think it helped. But inevitably his kidney function decreased further, and Steve started having problems with protein in his blood.
Steve went back on dialysis in 2016. He had peritoneal dialysis, where they put a tube into your stomach. It meant he could dialyse in our home. The process uses a lot of special fluid, which is delivered to your house.
Every month a huge articulated lorry would arrive at the top of the driveway and the guy would unload boxes and boxes of the fluid. My daughter and I would go up and bring the boxes down. And at that stage, Steve’s condition became a lot more noticeable to us all.
Dialysis four times a day, every day
Steve dialysed four times every day. He put hooks up around the house, in the dining room, the sitting room, the bedroom, every part of the house, so that we as a family could continue doing what we were doing, and he could be with us.
Throughout this time, I was continuing to work. Steve didn’t want to make a big deal out of his condition, so I had to take his lead. Seeing me jumping around on the television, interviewing
celebrities, doing my job, you wouldn’t have known anything was going on at home. Hardly anyone outside the family had any idea what was going on. And that’s the way we wanted to keep it.
The truth is, dialysis is a slog. Even when it’s not a slog, it’s a slog. It’s a very strange thing to do. You’re making your kidneys work externally, in a sense. It’s a phenomenal process and it works to an extent, but it’s invasive and it’s quite unpleasant.
Each of Steve’s dialysis sessions took about 35 minutes. Even if we were going on a long journey, we’d pull up into a service station and he would dialyse in the car as well. All the time, our daughter was seeing all of this bizarre behaviour, but it became her norm as well. Steve never at any point complained about it, so Mimi never thought of it as something adverse or sad even. That was how Steve wanted it to be. There were some days when he’d be really ill, days when he was feeling sick and couldn’t eat with us. But often he was okay. He managed to continue working all this time. He was still outside doing his gardening and being quite incredible.
One night I went to London to do a story about the New Zealand director, Peter Jackson, who made The Lord of the Rings and The Hobbit trilogies. I was interviewing him at the Imperial War Museum about the incredible work he’d done restoring World War I footage for his latest film. We ended up talking about New Zealand, and then talking about Steve, as I always do. And we talked about kidneys and Steve’s transplant in his teens, and when I left, Peter Jackson said, “Send my regards to Steve, fellow Kiwi.”
Afterwards, I edited the piece and stayed overnight in London. But at 2am, my phone rang, which is never good news, is it? It was Steve. He said, “Addenbrooke’s have just called. They’ve got me a kidney.”
It was the news we’d all been hoping for. My mum happened to be visiting, so luckily we had someone to stay with our daughter. Steve was taken straight into hospital, and I got the first train back.
Regaining freedom
Steve had his second transplant operation an amazing 32 years after his first. After nearly two years on dialysis, he was unshackled. Regaining his freedom meant we could go abroad on holiday
for the first time in ages. We went to Cyprus. We didn’t know it then, but it would be our last holiday together.
The following year, Covid-19 arrived, and suddenly everyone’s lives changed. For Steve, this meant he had to really, really self-isolate. The anti-rejection drugs he was on post-transplant suppressed his immune system, that’s how they worked. He was extremely vulnerable and had to be extremely careful. The whole family did.
As arts editor for ITV News, my job was to cover the impact the pandemic was having on cultural institutions, theatres, film, everything, around the country. To minimise my contact with people and the risk of picking anything up as I travelled, I didn’t stay overnight anywhere. I was driving sometimes 14 hours a day: seven hours out, filming a piece, editing it on location, then driving seven hours back home again. It was the only way to do my job and minimise the threat to Steve.
We had a strict regime. I’d step into the porch at home, put all my clothes straight into a bin liner, then leg it upstairs to the shower. We were meticulous in safeguarding Steve and it worked. He didn’t get Covid. I got Covid in November of that year after a trip to Birmingham to visit my mum. She was just coming out of hospital and she came out with Covid. Both my sister and I got it from her, and that was very frightening. I basically isolated myself in one room in our home, which I didn’t really leave for two weeks. Even then, Steve didn’t get sick, thank God he didn’t get sick.
Even though it was the most horrible, hideous year for the world, that took away so much, it also gave our family something special. When we looked back on that first lockdown year, the sun was shining and Steve, our daughter and I were all at home together. It felt like we’d been gifted a way of living that we weren’t expecting. Even though it was an awful, frightening time, it meant we got to spend all that extra time together. We will always have that year in the sunshine, in the back garden, keeping Steve safe, not knowing what was around the corner.
Among the many medications that Steve had to take every day was an anti-rejection medication called tacrolimus. He’d been taking it for most of his adult life. One of the side-effects of tacrolimus is an increased risk of skin cancer. It meant that every year, Steve had to go to the dermatologist and get checked. Often, he’d have to have a few moles burned off his back, just in case they turned nasty. These dermatologist visits were just one of the things that Steve took in his stride and that we’d come to treat as normal.
Side-effects of medications
But just before Steve’s last Christmas, in 2021, the lumps had changed. They’d got very large on his back. Very, very large.
It was day-surgery to have them removed, but it was quite invasive. This time there were cancer cells in those lumps, so the surgeon really gouged out lots of tissue to make sure they got it all and the surrounding cells. The surgery left deep holes across his back. My daughter (who was 16 at the time) and I would change his bandages because he couldn’t reach them. And he would be saying the whole time, “I’m so sorry, I’m so sorry, I’m so sorry.” Because it was absolutely horrible.
And then a lump popped up on his ear too. They had to cut a bit off his ear. And then there was a lump on his neck.
At the end of January 2022, a week before Steve’s birthday, the doctors told him that the cancer cells in the lump on his ear had spread. They would have to remove his ear. The surgery was scheduled for the day after his birthday.
It was Steve’s 60th birthday, his last birthday. Mimi and I bought him a big cream birthday cake and presents and everything. He was really, really tired. Mimi was home from school and we thought, “Let’s do our favourite thing as a family,” which is to watch all six of The Hobbit and The Lord of the Rings films. We used to do that once every two months because we loved them. We did it all through Mimi’s life. We ate some cake at 8:30am, and we were watching the first film by 9am, but Steve fell asleep by 10:30am because he was really feeling under the weather. And so that was his birthday.
Early the next morning, I took him to hospital. They removed Steve’s ear, and then I took him home that night with a huge bandage on his head and blood on his face. Typically, Steve was upbeat about the whole thing, he said, “Yeah, I think they’ve got it all. It’s going to be all right. It’s going to be all right. It’s going to be all right.”
Again, Mimi and I dressed the wounds for him, and again he was saying, “I’m so sorry guys, this is horrible.” But he was still positive. He said, “The surgeon told me they’ve got these prosthetic ears they can find. And I’ll have a hearing aid fitted in.” So he was going online and… we were effectively shopping for ears.
It was always that way with him, onwards and upwards. What’s done is done, right, I’m going to get a new ear. That was Steve. It was always about the next thing. And it helped us to feel… helped keep us from the edge of the cliff, if you like, because of his positive attitude.
Soon after, I flew off to Los Angeles to cover the Oscars awards ceremony as I do every year. Steve drove me to the station as usual. Everything was fine.
It was my birthday the weekend I got back and he had organised a big surprise birthday party with all my friends round. That’s how normal he was keeping things.
But his health was really deteriorating. In April, the doctors said, “We need to give you some radiotherapy, just to complete the treatment.” But the radiotherapy was very painful for him, and it became very difficult for them to give him the treatment. We had nurses coming around to the house to give Steve pain relief, ketamine and all sorts of things.
The surgeons told us, “Look, the cancer is spreading. We can’t stop it spreading. We can’t get rid of it. We can’t chop anything else out, but we can probably keep it at bay with more treatment.”
We all went into the hospital with Steve on the Friday night. Mimi and I stayed there. The nurses put a bed down the bottom of his bed. At that stage, he was in really bad pain, and they were giving him a tremendous amount of painkillers. But he was still really agitated.
The consultant said to me, the one thing that they haven’t quite mastered when it comes to cancer is head pain caused by cancer in the brain. They haven’t quite worked out the way to get rid of that pain. It’s one of the last frontiers. And unfortunately that was the pain that Steve was having.
Devastating news
On the Sunday, the consultant pulled me aside and she just said, “I’m sorry, we think he’s dying.” And I was like... just falling off the chair saying, “What?” I couldn’t believe it. “This is Steve Ronson. He’s had two kidney transplants. He’s everyone’s superman.”
My daughter and I were with him when he went. We played his favourite songs. It was about as gentle and as loving a farewell as you could have. But we were in shock. And I think we were in shock for six months. The house was immediately full of people. And we were swept along.
I don’t think we cooked anything for six months because people were cooking for us and we were being led here, being led there. And it was only after a few months when everyone went back to their lives and then it hits you like a ton of bricks that this incredible, unbeatable machine of a human being was gone. When someone like that goes, it’s doesn’t make any sense. It just doesn’t make any sense.
Connecting with the charity
I’d first become connected with Kidney Research UK in 2018. Steve had just had his transplant operation, and I wrote a blog about the experience for ITV News, because I just felt I needed to write something. I thought that Kidney Research UK might also find it useful, and from then on Steve and I got involved. We’ve done several fundraising events, including one where we met Andy Cole, the Manchester United footballer. He’d had a transplant the year before Steve.
I think Andy was having quite a hard time psychologically. He was obviously a superhero, and Steve was Mr Positive. After the event they stayed in touch. Steve would speak to him on the phone and try to lift him up. I’d hear him saying, “All right, this is what you should do, mate. Yeah, I know mate. It’s tough mate.”
Steve was really proud that I’d got involved with Kidney Research UK. He’d keep up with news of all the latest research. He’d tell me, “They’ve developed this new drug that’s much kinder than the one I’m on and it doesn’t have skin cancer as a side effect. So maybe I can move on to that.”
Steve was very positive and optimistic because the breakthroughs that were coming from the charity were amazing. They were changing people’s lives.
I think Steve would be so proud that I’m continuing to support Kidney Research UK, doing what I can to help, to talk about him, to share his story. I think it’s a perfect legacy for him. Steve’s big hope would be that because of new breakthroughs in kidney research, the ending for him wouldn’t have to be the ending for other people in the future.
Over the last few years, I’ve really got to know a lot more about kidneys. They are the most important, vital, heroic little organs. They’re not romantic, like hearts. I always imagine the heart as the swan gliding on the surface of the water, and the kidneys are its legs, below the surface, unseen, kicking like mad.
You might not think about your kidneys as much as your heart, but you need them. You might only need one, but my God you need them. They are utterly, utterly vital.
I’ve got such respect for kidneys, these organs that most people ignore. Steve had one working kidney and my goodness he respected it. When you have a transplant, they don’t remove your old kidneys. So we’d often joke to people that “my husband’s got four kidneys, how many kidneys has your husband got?”
Looking to the future, and what’s next, as Steve always did, I’m feeling very optimistic. We all saw during the pandemic what is possible in medical research when funding is available. There was an emergency, and people put their heads together and said, “Whatever it costs, we must have a vaccine.” And lo and behold, these brilliant minds came together and created the astonishing vaccines that were made available to millions and millions and millions.
The difference funding makes
It just shows you that funding makes one hell of a difference, doesn’t it? It shows you that the knowledge, the brains, the breakthroughs are sitting there, we just need to access them as soon as possible. It’s all about research.
Just look at what’s changed with kidney transplants in the last year. When you’re waiting for a transplant, one of the big barriers is your blood group. It has to match the blood group of the person donating the kidney. Because I’m Indian, my kidneys are far less likely to match anyone else from a different ethnic background because of my blood group and tissue type. I couldn’t give a kidney to Steve because our blood groups are different. We used to talk about, what if it didn’t matter what blood group you were?
Making research breakthroughs
And now, Kidney Research UK are making that a reality! They’ve made the first breakthrough. Researchers funded by Kidney Research UK have taken the first step to developing a process that removes the blood group barrier to matching kidneys. That is absolutely massive. Because if you are on the waiting list for a kidney, and suddenly it doesn’t matter whether the donor has the same blood group as you, it means lots more potential kidneys are available. In the near future, this breakthrough could be out there, changing so many people’s lives. Steve would’ve been amazed about that. This brilliant research could only happen because you and other people supporting Kidney Research UK made donations. Together you funded the work.
It is all about research. Steve believed in it so passionately. It gives people living with kidney disease a bit of light at the end of the tunnel. And that’s another reason why each and every one of your gifts, of any amount, are so, so valuable.
Research is showing that more and more people are developing kidney disease, whether it be our lifestyle, or our diet, but it is happening. Most people at some point in their life will know or be connected to someone who has some kidney issues.
I would not like anyone to go through what Steve went through, and myself and my daughter at the end, because it was cruel. It was really cruel. It’s been very, very difficult losing Steve, having fought alongside him for so long, and then to lose him like that. It’s something we’ll probably never recover from.
I met Steve at Machu Picchu and I knew straight away he was my soulmate. I knew instantly the
moment I clapped eyes on him and heard his gentle voice, I thought, “Oh, there he is.” The complete, utter one hundred per cent opposite to me, which is exactly what I’d been looking for. And I’m lucky that I met him. I’m lucky that he was well enough then to go to Machu Picchu. I’m lucky at the long life we had together, our marriage, our child. I just needed 20 or 30 years more, please. And I would wish for anyone else in our position, a longer life together than we have had, because it’s agony without him.
Thank you for being an amazing person and making your gifts to Kidney Research UK. You’re utterly brilliant. And you’re changing real people’s lives for the better. Thank you.
With warmest wishes
Nina.
Help create a future where no one loses a loved one to kidney disease.
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