Monday, October 17, 2011

CF sufferer gets new lungs, new start and new husband

By Nikki Murfitt MailOnline

Stuart Tancock turned to watch his beautiful, fragile bride Kirstie Mills walk down the aisle knowing that every step could be her last. Just days before, she had been rushed to hospital, close to death. As a sufferer of the incurable genetic disease cystic fibrosis, her lungs had finally given up after years of recurrent infections.

Alongside the wedding rings in Stuart’s pocket was a letter stipulating that if the worst happened, and the woman he loved stopped breathing, it was her wish not to be resuscitated.

Brave bride: Kirstie, with the oxygen tubes that helped her breathe, and Stuart on their wedding day

‘We had a plan for every scenario. If Kirstie collapsed, I’d take her to the room we’d booked for our wedding night to die. I felt incredibly helpless. I was marrying Kirstie and vowing to protect her, yet there was nothing I could do to keep her alive,’ says Stuart, 26.

Yet it was the happiest moment of their young lives. Kirstie, 22, recalls: ‘Most people spend months planning their wedding but I imagine there are very few who have to plan their funeral at the same time. I had to walk up the aisle with an oxygen tank beside me. But despite everything, it was even more beautiful than I could ever have hoped. We didn’t know how long we’d have together – we still don’t – but it just made me more determined to keep fighting.’

Miraculously, Kirstie not only survived but, thanks to an 11th-hour lung transplant operation, is now looking forward to a long and happy married life.

The couple’s remarkable journey will be charted in a forthcoming BBC documentary that highlights the life-and-death lottery for transplants in Britain. Kirstie knows all too well that so many in her situation are not as lucky. ‘There’s a desperate need for donors and, unfortunately, being put on the list still means there’s a 50 per cent chance of dying,’ she says.

Cystic fibrosis (CF) is a disease that affects more than 8,500 people in Britain. Five babies are born with the condition every week. It is caused by a faulty gene that allows too much salt and not enough water into cells.

Loving life: Kirstie is now able to go to the gym for two hours a day

This results in a build-up of sticky mucus in the body’s passageways that damages the lungs, digestive system and other organs, resulting in inflammation and, in the lungs, repeated infections.

Kirstie’s parents, Richard Mills, 54, a maintenance engineer for the RAF, and Linda Freeman, 53, were unknowingly among Britain’s two million carriers of the faulty gene that increases a child’s chance of having CF to one in four.

There have been remarkable advances in treatment over the past 50 years, which means sufferers no longer die in childhood. And many babies born now with the disease – including former Prime Minister Gordon Brown’s son Fraser, now five – may expect to live to their 60s. Yet only about half of CF patients will live beyond 35, and many will die far earlier.

Kirstie, who had trained as a fitness instructor, was one of the less fortunate. Having suffered infections in her lungs throughout her life, she had become resistant to antibiotics. By June this year, she was unable to breathe without the help of a CPAP machine, which pumps oxygen into the lungs via tubes in the nose.

Four days before her wedding, Kirstie was rushed to the Royal Devon and Exeter Hospital as her lungs failed. She pulled through and was able to make the journey to her wedding venue in an ambulance.

Three days after marrying, Kirstie was back in hospital and doctors admitted there was nothing more they could do. For patients with such severe lung damage, a transplant is the only hope. Although Kirstie had been on the waiting list since March, a suitable donor hadn’t been found.

Instead she was taken by air ambulance to Harefield Hospital, Middlesex, where she was given treatment known as extracorporeal membrane oxygenation (ECMO), in which a special machine is used to oxygenate the blood, bypassing the lungs.

‘I was in agony just trying to take a breath,’ recalls Kirstie. ‘I’d been given morphine but I knew I was dying. As I got into the air ambulance, I remember whispering to my mum, “This is pretty much it.” She hugged me and we said goodbye. I’m not sure either of us thought I’d be alive when she saw me again.’

Three days after she arrived at Harefield, surgeons told Kirstie they had a lung donor. But within two hours of being prepped for the operation, she was told the organs were too large. Another match was ruled out when it was discovered the lungs were infected.

Kirstie admits: ‘The disappointment drained everything out of me. I kept going into respiratory arrest. If I was ventilated, there was a risk my diaphragm would become paralysed because a machine was breathing for me and if that happened, there was no chance of a transplant.’

Her family, including Stuart, had virtually given up hope when at the start of July they were told there was a donor match. Kirstie says: ‘Most of the run-up to the transplant is a blur. The next thing I remember is waking up in agony. Even worse, for the first couple of days I was still on a ventilator so I worried I couldn’t make my lungs work.

‘I felt guilty that someone had died to give me life when I’d accepted dying anyway.’

Stuart was elated that his new wife had been given a second chance. ‘She looked instantly better,’ he remembers. ‘The surgeon told me her old lungs were the worst he’d seen in six years. By rights she should have died, but Kirstie is a fighter.’

Kirstie continues: ‘My muscles had become so weakened lying in bed that I couldn’t lift my head. The ECMO treatment had made my body swell. I was semi-sedated a lot of the time and started having hallucinations.

‘I was given anti-depressants, which I’m still taking, to help me cope with everything, including having to learn to walk again because I’d become so weak.

‘The big turning point came four weeks after my operation when I was able to walk up the stairs on my own again for the first time and was discharged.’

Her new lung function is now 74 per cent, which will improve as her strength and fitness builds. ‘I go to the gym two hours a day and I’m hoping I’ll be running on a treadmill by the end of the year,’ says Kirstie.

At first she had to take more than 45 tablets a day, but this has been reduced to 15.

She cannot eat prawns, pâté or smoked, uncooked meat because of the risk it could lead to an infection. But to look at Kirstie now, it is impossible to imagine she was hours from death.

Stuart admits he had never considered signing a donor card until he met Kirstie, but he now has one and hopes her story will encourage others to get one.

The couple have decided not to have children, not only because there is a risk of passing on CF but because they want to make the most of their new life together. The longest-surviving lung transplant patient has lived for 15 years after the operation.

‘We are just happy with life having been through so much,’ says Kirstie. ‘During all the terrible times, Stuart was the greatest thing in my life.’

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