Award-winning ITV News science and medical editor Lawrence McGinty spent two weeks in Papworth Hospital, the UK’s leading heart and lung transplant centre, where he met people lucky enough to get a new heart, lungs or both, and those still desperately waiting..
Alex Smith is one very happy man.
He strides into his physiotherapy session at Papworth Hospital looking like any other strong 37-year-old.
But three weeks ago Alex was seriously ill.
He was on a life-support device that kept his blood pumping around his body as his heart was failing.
“I wasn’t living, just existing. It wasn’t a real life,” he says.
The ex-RAF police dog-handler from Lincoln used to be fit and active, playing rugby league and running around with his two young sons.
But during his service in the RAF they found a serious heart defect.
Things deteriorated from there and he was put on the waiting list for a transplant.
He waited for 20 long months – doctors only put patients on the list if their life expectancy is under two years.
But organ donation in the UK is at a critical stage – 96% of the population support the transplant programme, but only a third of them are on the organ donor register.
And only a small proportion of people who have agreed to donate their organs die leaving an organ, like the heart or the lungs, in good enough condition for transplant.
That means very few organs are actually available. Which results in many people like Alex waiting and hoping.
Physio: Alex on the treadmilll after his successful op
Alex talks emotionally about the special person – and the family that agreed, in spite of their intense bereavement, to donate their loved one’s heart.
“My life had ended 20 months ago. Because of somebody else’s gift I’m now alive,” he says tearfully, tears of joy at finally getting a donor heart, but also tears that express his gratitude to the donor family.
At Papworth Hospital, the UK’s leading heart and lung transplant centre, they have around 47 people on the waiting list for a heart transplant and nine patients waiting for heart and lungs.
For a heart, the wait can be anything between three months and two years.
Waiting for other organs like a kidney can be even longer, years can pass, and one in six people will die waiting – that’s three people every day.
But staying positive is the best attitude for patients to take. That is embodied in Bernice Perry.
At just 21, Bernice who lives in Haverhill, Cambs, has spent a lot of her young adult life in hospital because she has cystic fibrosis, a genetic disease that leaves her lungs and heart weak and vulnerable.
She should have been at home this week, but an infection means she’s back in an isolation room at Papworth.
But seeing her as the petite, pretty and chatty girl she is, you wouldn’t know initially anything was wrong with her, until her coughing starts and then doesn’t stop.
Bernice has been on the waiting list for a heart and lung transplant for four months now, and without one she won’t survive.
Scrubs: Lawrence in theatre
“I was strangely quite excited to be put on the list because I thought this could be an opportunity for me to have my second chance, for me to be able to do things that normal 21-year-olds should be doing,” she says.
Her message to the two-thirds of the population who haven’t signed up to the donor registry is all the more powerful, coming from someone whose whole future depends on the transplant team finding a donor who matches her size and blood group.
“I have lost a lot of friends due to there not being enough organs. So many more people should sign up and hopefully me and my friends could have that second chance.
“It does upset me. I have got quite a few people to sign up to the donor register, which I’m happy about. I just wish a lot more people would do it.
“A lot of people say they will and don’t get round to doing it. It takes seconds.
“You don’t know how much it could change someone’s life and how it could help someone. There’s no word for how grateful someone would be for that.”
For people on the waiting list, it can be a tormenting time.
But for someone like Bernice to have a greater chance of a transplant, it needs more people to join the organ donor register and discuss their wishes with their family.
One family that knows all about that is the Coles.
Tragic: Charlotte Cole on a horse
Their daughter Charlotte died in a horse-riding accident two years ago aged 23. She was on the verge of breaking into a career as a professional National Hunt jockey.
Teacher Diane, 54, and retired Roger, 56, are proud that she didn’t die in vain.
They discussed organ donations with Charlotte in a jokey way just a few days before her death. But behind all this, they knew that Charlotte was very serious about wanting to donate her organs.
When she died, they readily agreed her organs should be donated. Five people received them, including a nine-month-old baby.
Some months later, Diane and Roger received a letter from one recipient.
“The letter was just wonderful, a real heart to heart. Although you know that life goes on, to have a letter like that is just amazing, it helped so much.”
Diane and Roger say that agreeing that Charlotte could become a donor has helped them to recover from the shock of her death.
“The tragedy has been turned into something good.
Across the UK, 193 people are currently on the waiting list for a heart transplant. But for some, just waiting on the list isn’t an option – they simply won’t survive.
Such is the shortage of donor organs that doctors are looking at every possibility for treating patients on the waiting list.
At Papworth, they’re pioneering a new operation called PTE.
Grief: Parents Diane and Roger
It’s for patients who suffer from pulmonary hypertension – high blood pressure in the artery that carries blood from the heart to the lungs.
High blood pressure might not sound too dangerous, but this kind is a killer.
Until recently, a heart and lung transplant was the only operation doctors can offer. But the new operation is a real alternative.
Doctors cool down the heart to 20C to stop it beating. A heart-lung bypass machine takes over as surgeons wash out the blockages in the pulmonary artery that raise the pressure.
We watched and filmed as they worked for 20 minutes. Then they have to warm the body before cooling it again to resume the procedure.
It’s probably the most complex operation on the NHS. Even the most skilled and experienced surgeons need a year’s training for it, and it takes 11 hours and costs around £50,000.
Papworth is one of only five hospitals in the world performing the operation and they have performed over 100.
And crucially, it relieves pressure on the demand for donor organs.
In 2011, Papworth Hospital sent home the UK’s first patient to be fitted with a ‘Total Artificial Heart’.
Matthew Green suffered from end-stage heart failure and went from being able to cycle nine miles every day, to barely managing to walk a few yards. Time was running out.
Over 18 months later, with the artificial heart working well, there are still concerns for 41-year-old Matthew. He still needs a heart transplant.
But when a donor organ is found it has to be assessed to be a match for its recipient.
That assessment is based on blood group and the height and weight of the donor.
Pioneering: Papworth Hospital in Cambridge
Matthew is tall, 6ft 3in, and so far, no heart has proved suitable, meaning he feels strongly about getting on the donor register.
“It means life for someone else and for a lot of people on the waiting list if they don’t get a heart in time they won’t survive,” says the pharmaceutical consultant from Kingston, Surrey.
“There’s only a certain amount of time you can wait. I had weeks left to live when I had the machine fitted to replace my ventricles and heart valve, and if I hadn’t, I wouldn’t have made it.
“The waiting list can feel tormenting. You’re grateful to be on it because many others aren’t, and yet it restricts your life.”
The married dad-of-one can only wait for the phone call. He always has to carry his pumping machine, which powers the Total Artificial Heart, and spare batteries around, and he can never travel too far.
Since 1994, over 11,000 people have died on the waiting list for a transplant.
At its peak in the 1990s, there were around 400 heart transplants every year. Now doctors can only carry out about 100 a year.
They have the technology. The NHS has the money. What’s lacking, are donors.
LAWRENCE’S REPORT IS ON ITV NEWS AT 6.30PM AND 10PM THIS WEEK. VISIT ITV.COM/FROMTHEHEART
Inside Papworth Hospital: ITV News’ Lawrence McGinty meets transplant patients and those still waiting – Mirror Online.