This is the way I live now

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These last few months have seen me follow the quite remarkable journey of an old friend waiting desperately for a heart trans­plant. Will Pope is now 20 years old. I remember him clearly as a fresh-faced teenager: funny and immediately likeable, musically talented, and above all perfectly healthy. My most vivid memories are of his relentless guitar playing on the school bus which – despite being annoy­ingly good – was greeted with unanimous frus­tration by the number 854 faithful.

Will moved schools, at which point I sadly lost contact with him. However, my parents remained close with his and it was through them that I discovered the horrific news in March 2009 that Will – aged 16 – was suffering from catastrophic heart failure. His condition was thought to have been triggered by a vi­rus and was totally unexpected. Having com­plained of breathlessness and after visiting his doctor days earlier, Will had actually been sent home and told to pop back if he still felt unwell in a week or two. As his dad, Philip, put it, “‘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.” He was just extraordinarily unlucky.

It was the matron at Will’s school who first made the call to his mother Rosie, telling her that he needed to go to A&E immediately. After being rushed to hospital by ambulance and hav­ing his heart exam­ined, Rosie was told that Will was “very seriously” ill. In fact, one doctor lat­er noted he’d never seen anybody in that condition still able to walk.

Two days fol­lowing ad­mission, Will underwent open heart surgery in which a pump was inserted to sustain his blood flow and support his heart, allowing it to recover its function. To give some sense of the scale of the operation, the pump was driven by four batteries – each the size of VHS tape and weigh­ing considerably more – that had to be carried around in a bag at all times. The procedure was fortunately successful – in no small part due to the brilliant team at the Harefield Hospital. Combined with continued drug therapy, it al­lowed Will’s heart to recuperate sufficiently for the device to be removed later that year. Will and his family very much hoped that the worst was behind them; but in the long term, the prospect of a transplant always remained.

Will had dropped a year but went back and completed school, followed by his first year at Bristol University studying Classical Civilisa­tions. He kept fit, riding his bike around Bris­tol and rowing, and sang in a jazz band. He joined the Revunions, a Bristol comedy group. Life was good. Then, last summer, Will em­barked on the notoriously epic Mongol Rally; the stunning six week road trip from London to Ulaanbaatar that every slightly insane stu­dent – myself included – dreams of complet­ing. However, at the very end of the trip, Rosie received what must have been a terrifying call from her son, who, thousands of miles away, was feeling very ill. Will managed to make the long journey home and once again was imme­diately admitted to Harefield Hospital.

It was now clear beyond doubt that Will’s best option was a heart transplant. But in spite of being prioritised on the Urgent List, Will spent 122 days in hospital waiting for a do­nated heart, to no avail. This time was a deeply intense personal challenge for Will, as he laid bedbound, facing the agonisingly stark reality of his future without a transplant.

Yet, in a November documentary on ITV about Organ Donation, Will made a remark­able statement: “It’s a possibility that I won’t get a heart. It is a little bit terrifying, but at the same time I’ve managed to come to terms with the thought of loss, and that’s fine. I’ve made my peace with that. But for my fam­ily it’s very difficult.” Hearing someone my age calmly state that they are “at peace” with dying is something I found profoundly stirring. As Philip eloquently put it, “Will’s had to confront his mortality in a way most young people nev­er have to.”

These arduous months undoubtedly put immense strain on the Pope family, as they witnessed Will gradually weaken. Listening to his parents on the same programme made me realise how crippling powerlessness is on the psyche in such tragic scenarios. There is of course absolutely nothing you can do; only wait and hope that an appropriate heart becomes available. This is a bizarrely conflicting situation to find oneself in; as Rosie put it, “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.”

Eventually after waiting for two months, the surgeon told Will that he was “head­ing for a cliff.” His other organs were failing and he was now becoming too un­well to undergo a transplant. Some­thing needed to be done, and fast. A new­er, smaller pump had recently been tested and was proposed by the surgeon, in order to buy Will some time. But once he had the pump, he would no longer be on the urgent’ list, so the prospect of him getting a transplant would be greatly reduced. The operation was scheduled and performed, yet despite a long time trying, the pump failed to work properly. Another bout of surgery and another pump also failed. With Will extremely ill, the final decision was made to use a temporary external pump in the hope he’d recover enough to allow a transplant. But this would be if – and only if – a heart became available. Christmas Day was spent in hospital. This was an excruciating phase to watch at a distance; one can barely begin to imagine the stress placed upon Will and his family during this time.

Then, on New Year’s Eve, Will’s family were told that a heart had been found; it was time. The window for using a donated organ is des­perately short; not much longer than three hours. It’s amazing that any successful trans­plants are performed at all. After an extremely complicated operation and ten days spent un­conscious, Will woke to discover he had a new heart.

One in five people on the transplant list die waiting for organs. A recent survey suggests 70 per cent of us would accept a transplant – un­surprisingly so – yet roughly 60 per cent have not put themselves on the organ register. This raises the question, “if we’re prepared to receive an organ for ourselves or a loved one, then why are we not prepared to donate one?”

Writing this account has one very simple purpose: to make more people consider or­gan donation. It’s been absolutely terrifying watching someone I know – someone young, fit and healthy – be struck down and almost die, completely out of the blue. By contrast, how­ever, I have found it indescribably uplifting to watch this same person emerge from the very depths of illness because of the amazing gift of a donated heart. More so, I have found it truly inspiring to observe Will’s family con­duct themselves with such grace and courage throughout a time of utter desperation. They have campaigned tirelessly to promote aware­ness for Will and others like him, showing that simply signing the Organ Register can save someone’s life.

This is not a case of greedily desiring some­one else’s demise. I know for a fact that families on the receiving end of a donation find it both confusing and saddening to know the cost at which it has come, especially considering their conflicting joy at its arrival. This is a mat­ter of offering your organs as a free gift in the unfortunate circumstance of your own death. You won’t be using them any more. So what a wonderful blessing it would be to maybe spare another person’s life: as one life extinguishes, another can be reborn.

Statistics suggest that roughly 90 per cent of people are happy with the idea of organ dona­tion, but only 30 per cent actually sign up. This is absurd. Around 1000 people die every year waiting hopelessly for a transplant; but many of them could be saved.

It really is unbelievably easy to register – just pop on the Register link below, and you’ll be done in five minutes. And if you do so, please remember one thing: tell your family. Approxi­mately 40 per cent of families refuse permis­sion for their loved one’s organs to be used even if they are already on the register.

Will was very lucky to receive a heart trans­plant; he had very little time left. His post-op­eration journey to recovery has been fraught with serious complications; a telling reminder of just how desperate his condition was prior to the transplant, because of his long wait. He suffered a life-threatening cardiac arrest and for weeks his motor nervous system shut down, leaving him totally paralysed. He was trapped, unable to communicate, connected to a ventilator and unable to move. This must have been terrifying. Having been critically ill and sedated for so long, Will has “neuropa­thy,” meaning that he now has to re-learn how to move his muscles. He is incredibly thin and weak, a mere shadow of his former self.

Slowly but surely, Will is on the mend. He has a long and difficult road to recovery ahead of him, but each day, his strength grows. He recently made a huge breakthrough; for the first time since the operation six weeks ago, he walked with an aide. Yet undoubtedly, the best news of all is that he now has hope for a future life.

Will appeared in the ITV documentaries “Waiting for a Heart” and “From the Heart”, the focused on his story and the current sad state of organ donation in the UK. Will and his family agreed to participate in these programmes in order to raise awareness for organ donation. His friends at Bristol have been campaigning for Will and others in position.

As a result of this campaigning over the course of just a few months, the number of registrations has almost doubled in a year. The aim of the campaign is to make organ donation normal, so that others in Will’s position can have that second chance. It would be fantastic to help them make a real difference. Whilst still very weak in bed, Will was asked to describe what it feels like to have a new heart. Slowly and quietly, yet full of purpose, Will responded, “it feels better than anything in the world. I didn’t know I’d had it for ten days after the operation and then it came as such a shock, in such a good way. I can’t wait to go home and sit by the fire and have homemade food and see my brothers…and be normal”. He was asked what he’d say to the family of the donor of his heart: “I’d like to say thank you so much- its such a wonderful gift and you have no idea how much it means to me. And that anyone could be so generous is fantastic”.

Follow Will’s progress on www.willpope.co.uk and on YouTube.

Become a doner yourself, at www.organdonation.

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