Will could only mouth the words because the ventilator which helps him breathe makes speaking almost impossible, and his hands are sometimes too shaky to type messages on his laptop.
Confined to a hospital bed, wires trail from his body. He is being kept alive by machines and medication as his heart fails and his major organs struggle to function, but thoughts of home and family keep Will’s spirit going.
Will, 20, first started to complain of feeling breathless when he was 16, following a chest infection
‘To be able to bring my son home would mean everything to me,’ says his mother Rosie, a 54-year-old media lawyer from Buckinghamshire. ‘Will is incredibly brave, but sometimes when he is low, he will say to me, “Why did this have to happen? I just want to be normal.”
‘So I hold his hand and I tell him, “We will get through this and we will bring you home.” Even when he was very sick the other day, he tried to remain positive and said to me, “This time will pass”.’
Will’s hopes of returning home and resuming a normal life, though, are totally dependent on one thing — a heart transplant.
Critically ill with end-stage heart failure, believed to have been caused by a virus, he has spent 112 days at Harefield Hospital in North-West London, almost half of them in intensive care.
He is now on the urgent transplant waiting list. But Britain is in the grip of a desperate shortage of donor hearts — a shortage of which the general public is almost entirely unaware.
Today, Will is living with the help of an external mechanical pump forcing the blood around his body and until this week — when his condition improved enough to potentially undergo transplant surgery — his surgeon had described Will as ‘heading for a cliff’.
And so Rosie and husband Philip, 56, a music composer, and their two younger sons Matt, 17, and Guy, 14, will spend Christmas Day at Will’s bedside hoping for the miracle which will give him his life back.
This once fit and healthy young man, who enjoyed sport and played guitar in a rock band, has been too ill to eat anything for six weeks except for ice lollies. There will be no Christmas dinner.
Philip and Rosie Pope will spend Christmas Day at their son's bedside hoping for the miracle which will give him his life back
Philip says: ‘Will has had his horizons narrowed to this hospital room. He’s had to confront his mortality in a way most young people never have to and he has accepted his condition with a maturity and equanimity which is both poignant and moving.
‘If Will were to receive a new heart, all our feelings would be with the family. It is tragic that our son’s survival depends on someone else’s sad demise.
‘But we would also feel incredibly grateful that our son had been given a second chance through someone else’s generosity, because he has so much to offer.’
Rosie and Philip Pope have agreed to talk to the Mail in the hope of encouraging more people to sign up to the organ donor register and — more crucially — for donors to discuss their wishes with relatives should the worst happen.
This is because even when a donor has given permission for their organs to be used, if their grieving family does not agree to this happening, the doctors will respect the family’s wishes.
About 1,500 people die every day in the UK, but very few are suitable donors and 45 per cent of relatives decide not to donate. According to surveys, 90 per cent of people would like their organs to be used after their deaths to help others, but only 31 per cent actually sign up or carry a donor card.
Around 150 heart transplants are carried out each year in the UK and there are currently 140 people on the urgent heart transplant list and a further 7,300 on the routine list.
One in five patients dies waiting for a heart transplant because there is a chronic shortage of such donors. Doctors prefer to use hearts from young, healthy donors, but fewer young people are dying in road accidents and those who do are rarely donors. Will Pope would have liked to join his parents in speaking out for this article, had he been able to do so.
The young man's hopes of returning home and resuming a normal life, though, are totally dependent on one thing ¿ a heart transplant
However, before he was admitted to intensive care, when his condition suddenly deteriorated, he told ITV’s Tonight programme: ‘I would just like to have a heart. It’s a little bit terrifying and hard to come to terms with the thought of losing my life. I am at peace with that, but for my family it’s very difficult.’
Doctors do not know how long Will can survive without a transplant, but Rosie Pope says the longest any patient at Harefield has remained on the temporary external mechanical pump, which Will now has, is ten weeks and her son has already been on it for two.
There are other surgical options, such as fitting a new internal mechanical pump, but these offer only a limited reprieve and a much poorer quality of life.
Rosie, who is temporarily not working so she can spend every day by Will’s side, adds: ‘I honestly think people don’t realise if they are going to lose a relative, that if they say “yes” it could make an enormous difference and give someone else a chance.’
Philip adds: ‘The worst part is not being able to do anything at all to make it better. You want to be able to say “It’s OK, I can fix it”, but it is completely in the hands of the medics and organ donors.’
Until the age of 16, Will Pope had seemed like any other healthy, young teenager. As a child, his health had never given his parents a moment’s concern. Academically gifted, as a schoolboy at the Royal Grammar School in High Wycombe, he enjoyed sports and threw himself into creative arts — acting and playing guitar in a band.
Although his parents thought he had all the makings of a future barrister — such was his ability to outmanoeuvre them in arguments — Will, who possesses a wry sense of humour, talked instead of a career in comedy.
After so much time in hospital and feeling so unwell, Will doesn¿t even have the energy to read, listen to music or watch TV
It was in March 2009, aged 16, that he first started to complain of feeling breathless following a chest infection. Rosie took Will to their doctor, who said that if he did not feel better in a week or two, he should come back to the surgery.
Philip says: ‘Because of his age and the fact he’d always been so healthy, I don’t think the doctor even considered that he might be suffering from a condition normally seen in much older patients.
‘It was an art teacher at his school a few days later, worried about how pasty and liverish Will looked, who sent him to see the school matron. She was so worried she called Rosie and said he needed to go to A&E immediately.’
Rosie continues: ‘That was when everything went into overdrive. We went to Wycombe Hospital, where a cardiologist put him on an echo machine — which measures heart function — and told me Will was very seriously ill.
‘He was transferred to Harefield Hospital and it came as an enormous shock when we saw that he was being admitted to the transplant ward. One of the doctors told us he had never seen anyone with a heart in a worse condition who was still walking around.’
Doctors do not know exactly what caused Will’s heart to fail so catastrophically at such a young age, but believe it may have been the result of a virus which attacked his heart muscle.
Two days after being admitted to Harefield, Will underwent major heart surgery and a mechanical pump, known as an LVAD (left ventricular assist device), was installed.
This is like a small, powerful motor with hoses attached which does the work of the left ventricle, the engine of the heart. It is powered by batteries, which the patient carries with him on a belt around the waist. At night, it is plugged into a machine.
Combined with drug therapy, LVADs have helped some patients recover from heart failure without the need for a transplant; for others it has bought them precious time while waiting for a new heart.
Will can’t leave his hospital bed, and the time drifts by as the wait for a new heart becomes ever more agonising
Rosie says: ‘Coping with the device is not great, but it keeps you alive and the LVAD combined with drug therapy allowed Will’s heart to rest and recover sufficiently for the device to be removed later that year. At the time, Harefield was leading the research into heart recovery and Will was lucky to be part of the programme.’
The Pope family had hoped the worst was behind them and Will — his condition controlled by drugs — returned to school.
After repeating a year — missed through illness — Will passed three A-levels, gaining an A*, A and a B, and in September 2011 headed off to Bristol University to study classical civilisation.
It had always been Will’s dream to take part in the Mongol Rally, a 10,000-mile, six-week car drive from London to Mongolia, and on Friday July 13 this year he set off with a friend with the aim of raising funds for Harefield Hospital.
Rosie says: ‘Will phoned me from Mongolia saying he felt very ill. He was extremely frightened and I told him to get the first flight home. I thought we were going to lose him before he could get back and that he might not survive the flight. He was returning via Moscow airport so I pulled out all the stops to have cardiologists from Moscow Hospital waiting in the wings in case he was too ill to travel further.
‘When I met him at Heathrow, Will looked very puffy and yellow. I wanted to take him straight to hospital, but he said, “I really want to spend just one night at home”, so that’s what I did. I took him home thinking one night wouldn’t make a terrible difference and because it was what he wanted more than anything.
‘That was the worst time for us, the lowest point. It came as a terrible shock. Going to Mongolia was an amazing experience for Will, and something he wanted to do, but given what has happened, I think sometimes he now regrets it. Although he is proud of his achievement and more mature and able to deal with his situation.’
The day after Will’s return on August 28, he was transferred to Harefield Hospital again by his local hospital. Given the severity of his condition, he was immediately placed on the urgent transplant list. After ten weeks, however, his other organs were failing because not enough blood was being pumped by his heart to support them.
Will was operated on twice so that surgeons could implant another type of mechanical device to support his heart, but this unfortunately failed. In a further operation (his fifth in total) surgeons successfully implanted a temporary external pump. His mother says: ‘Through all of this, Will has never lost his sense of humour. A few weeks ago, just before being wheeled into the operating theatre for open heart surgery, he looked into my eyes and said: “Mum, I love you more than anything… apart from ice lollies.”
Will is living with the help of an external mechanical pump forcing the blood around his body and was 'heading for a cliff'
‘But there are days when he feels low or gets depressed. He seems to be taking two steps forward and one step back, but sometimes it is the other way round.
‘Being stuck in an intensive care unit is a bit like being on a long haul flight on a budget airline with the blinds down, with beeping all the time, strip lighting and disturbances. There is no food or drink to alleviate the boredom and there is the constant fear in the back of his head as to whether he will ever get out of there.’
Will doesn’t even have the energy to read, listen to music or watch TV. He can’t leave his hospital bed, and the time drifts by as the wait for a new heart becomes ever more agonising.
Rosie says: ‘A few days ago, we heard they may have found a heart for Will. It was a day of mixed emotions — sorrow for the young person, but huge gratitude to her and her family for allowing her heart to be made available.
We felt great fear for Will embarking on a sixth operation, but hoped that this could give him his life back. That evening we were told the heart transplant could not go ahead because the heart had failed the final test, and wouldn’t be powerful enough to pump the blood around Will’s body.
‘Although we felt huge disappointment, we accepted that to implant this heart could have been a disaster for Will and we’re grateful to the team at Harefield for carrying out such a thorough assessment.
‘As a family, we have hunkered down and we live day by day. It’s been tough for his brothers, but they are old enough to understand and we’ve had amazing support from friends and family.
‘The wonderful medical staff at Harefield couldn’t have been more dedicated and we are incredibly appreciative of the critical care Will has received in the NHS.’
Philip adds: ‘Will wants to know the truth about his situation, but he also wants to be reassured that everything is normal at home. We try to keep his spirits up, but in fact it’s Will’s courage and determination that is keeping us all going.’
The agonising wait continues, but hopefully Will Pope’s wish to go home with his family will be granted one day soon.
Read more: http://www.dailymail.co.uk/health/article-2251945/Count-blessings-help-Perfect-son-just-weeks-live-unless-heart-donor-found.html#ixzz2FzZTUemO
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