Jack Pepper is a fairly typical teenager, bursting with energy and busy living life to the full. As well as studying for a diploma in plumbing, he enjoys keeping fit and active through swimming and running.
But there is one thing that sets Jack, 19, apart from his peers.
This time last year he was staring death in the face, as doctors frantically searched for a healthy donor heart to replace the one rapidly decaying inside his body.
As the stricken teen lay in hospital on life support, the chances of a suitable donor being found in time were slipping away.
Over a two-month period, four potential replacement hearts became available, only to be ruled out at the last minute as unsuitable following routine checks – dashing his family’s hopes in the process.
“We had four heart offers in a row that were not a match,” recalls Jack’s mother Sarah, 48, a social worker, who is married to engineer Lee, 54.
“The transplant coordinators would come in, looking very upset for us, and say ‘we’ve done the final checks and we’re so sorry’.
“It was a terribly traumatic time and things were getting quite desperate by that stage.
“Jack had lost a lot of weight and looked emaciated. I was desperately worried he would not get a heart in time.”
With hope fading, Jack was placed on the Super Urgent transplant list – for those so sick they are given priority by the NHS when a potential replacement becomes available.
One in 500
Jack was only 12 when doctors delivered the devastating news that he had a dangerous and incurable heart condition called hypertrophic cardiomyopathy.
Caused by a mutation in one or more genes, it is passed on through generations – a child of a parent with the condition has a 50% chance of inheriting it, according to the British Heart Foundation.
The charity estimates that as many as one in 500 people in the UK is affected but most have no idea as it rarely leads to obvious symptoms. In some cases, the first sign of a problem is when the patient suffers a heart attack, in some cases a fatal one, often at a young age.
The genetic defect means the muscular wall of the heart – the myocardium – is thickened, making it stiffer and less able to pump blood properly round the body.
While some sufferers experience no ill effects until the situation reaches crisis point, others have warning signs such as chest pain, lightheadedness, palpitations or shortness of breath. Although it cannot be cured, the risk of life-threatening complications can be reduced by eating a healthy diet, doing gentle exercise and managing stress.
Drugs to control high blood pressure can help and, in some cases, doctors insert a device called an implantable cardioverter defibrillator, or ICD, into the chest. This watch-sized gadget can detect when the heart is developing an abnormal rhythm (which could lead to a heart attack) and shocks it into a healthy rhythm before things go horribly wrong.
Jack, from Leicester, had joined an after-school running club but soon found himself falling a long way behind the others.
“I just put it down to not exercising a great deal and too much sitting around,” he says.
But his running coach, worried that there might be an underlying health issue, advised the family to arrange a medical check to make sure there was nothing wrong. It was the beginning of a diagnostic journey that, within a few months, saw Jack and his parents sitting in Glenfield Hospital in Leicester as a consultant delivered the shattering news.
Sarah says: “I didn’t really think there was anything wrong with him and then suddenly we were being told about this very serious condition.
“Poor Jack was sitting there trying to take it all in and even the doctor started to well up.”
Doctors placed Jack under close surveillance, carrying out regular checks to make sure his condition was not worsening to the point where immediate action was needed. But in February 2022, things took a dramatic turn for the worse.
Jack developed what seemed like an innocuous bout of tonsillitis as his throat became sore and inflamed.
His GP prescribed a course of antibiotics, but within a couple of days he had worsened considerably to the point where he was vomiting and exhausted.
When Sarah noticed he was developing strange purple spots on his arms, alarm bells rang. This is a classic sign of sepsis, a potentially deadly condition that affects almost 250,000 people a year in the UK and kills around 48,000. It is triggered when the immune system overreacts to an infection, flooding the body with compounds that cause a catastrophic drop in blood pressure, widespread inflammation and in many cases organ failure and death.
“Sepsis usually attacks the weakest point in your body, so it went straight for my heart,” says Jack.
“I thought it was game over.”
He was rushed by ambulance 90miles south to Harefield Hospital, West London, one of the largest specialist heart and lung centres in Europe. There, doctors immediately placed him on a machine to oxygenate his blood and keep it circulating while transplant coordinators desperately searched for a potential donor heart.
“I knew we were running out of time,” says Sarah.
“But I had decided early on in the process I was going to stay upbeat and positive for Jack’s sake.”
However, both she and Lee felt helpless as, one by one, the donor hearts fell by the wayside.
Fifth time lucky
Finally, on May 18, 2022, it was fifth time lucky as staff at Harefield Hospital located a new heart that was a perfect match in terms of the donor’s blood group, size of the organ and condition.
But even when this organ became available, there was a catch.
The donor had tested positive for hepatitis C, a liver disease that, although treatable, can damage the liver beyond repair – in rare cases causing death. “Doctors said there was a 5% chance I would catch it too and it could kill me,” says Jack.
“But then I thought, well the transplant surgery itself is probably more dangerous than that, so let’s go ahead with it.”
Within a few hours, Jack was undergoing a mammoth 11-hour operation to try to save his life.
He says: “The failure of the fourth heart was a really big blow, so I decided not to get my hopes up until the point where they were actually wheeling me into the operating theatre. I knew I was getting much worse and by that point I could barely stand up.
“It didn’t seem fair – I was the youngest person on the ward by far and I thought, ‘I’m only 19, why is this happening to me?’.”
Despite having a wound the length of his torso, Jack was sitting up in bed the next day and back home in just over two weeks – a fraction of the time it takes most heart transplant patients. He was also given the all clear for hepatitis C, which would have flared at the time of the transplant if it was going to. Now he needs a daily cocktail of drugs to stop his body rejecting his new heart but the speed of his recovery has astounded both his doctors and parents.
Within a couple of months, his life was almost completely back to normal.
But the family are acutely aware that Jack’s gain only came around through another anonymous family’s tragic loss.
“I sent them a card to say how grateful I am for a second chance at life and that I’d been able to celebrate my 19th birthday thanks to them.”
Now Jack and his parents are looking to the future again.
“Doctors brought Jack back from the brink of death – he’s just a normal young lad again and we cannot thank them enough,” says Sarah.
“They’re miracle workers.”
To find out more about organ donation go to organdonation.nhs.uk. For more about hypertrophic cardiomyopathy go to bhf.org.uk
