Heart transplant survivor appeals for everyone to consider organ donation - and let family know your wishes

A heart transplant survivor is urging everyone to take time to make a choice over organ donation and let family and friends know what they’ve decided.

Steve Evans, 53, received a new heart last November because a serious condition was causing dangerous changes in his heart rhythm.

Without the donation, Steve was living from minute to minute with the fear he may die. But since his surgery, he’s made such a fantastic recovery that he was able to take part in last weekend’s British Heart Foundation’s London to Brighton off-road bike ride, an event covering a tough 61-mile route.

Steve is making the most of his amazing new lease of life and is eternally grateful that his donor or their family made the choice to donate.

It’s a particularly relevant sentiment this week, which is Organ Donation Week, and both Steve and Swansea Bay University Health Board’s organ donation specialist nursing team, who play a vital role in supporting families faced with the reality of organ donation, are encouraging people to think about their preferred option should the worst happen.

Since 2015, there has been a soft opt out system for organ donation in Wales, whereby if you don’t confirm your wish to either donate or not on the national organ donation register, it is assumed that you have no objections to your organs being gifted to others.

But while the idea is to increase the numbers of potential donors, if a patient hasn’t expressed a preference one way or another, the final decision will rest with their family at an intensely difficult time.

The number of families who consent to their loved ones’ organs being donated has been falling in recent years. Which makes it even more important for everyone who hasn’t done so to make a decision - after careful consideration - regarding donation and to register the decision. To do so, go online to the NHS Organ Donation Register, which is 30 years old this year. It only takes two minutes to sign, but can potentially mean the gift of life for nine people.

“It is impossible to express how much gratitude I feel towards the person who donated their organ to me,” said Steve, a dad-of-one from Ystradgynlais.

“I was in a situation where I was literally terrified to go to sleep. There was a chance I would never wake up again. So receiving a new heart was a stranger providing me with the gift of life. I cannot express what that means.”

Steve, a Swansea-based police officer, was diagnosed in 2013 with arrhythmogenic cardiomyopathy - meaning his heart was beating in an irregular, life-threatening way. Up until then, he’d been fit and active.

After spending weeks in Morriston Hospital, he was fitted with an implantable cardioverter defibrillator (ICD) which sends electrical pulses to regulate abnormal heart rhythms, especially those that could cause a cardiac arrest.

Steve was offered an office-based job in Swansea Coroner’s Office and for the next few years, was able to lead a relatively normal life. But beginning 2017, he started to experience short periods when his heartbeat would become erratic.

The problem became more severe in 2020 when he began to suffer prolonged periods when his heart rhythm became dangerous. This would repeatedly trigger his ICD, causing him intense discomfort and leaving him in need of treatment in hospital.

Steve said: “I remember the first time it happened. I had seven shocks from my ICD very close together. When your ICD goes off, it’s like being kicked in the chest by a horse.

“The episodes were happening at any time - I could be sitting down watching TV. It even went off when my heart rate was faster than normal. It was just horrendous.”

Doctors at Morriston then tried another procedure - called an ablation - to correct the problem. However, when Steve continued to suffer problems, he was placed on the heart transplant list in September 2022.

Over the next 12 months, Steve had to contend with an anxious wait. He was alerted to the possibility of a donor match on five occasions only to learn that the heart wasn’t suitable.

Finally, last year a match was found. He added: “I had the transplant at Harefield Hospital in London, which is a specialist centre and renowned for treating heart and lung conditions.”

Steve wasn’t initially allowed to drive after his transplant, so he bought himself an e-bike which he used to get about and to help regain strength. Getting on his bike has also allowed him to raise more than £1,500 for the Swansea Bay Health Charity and the British Heart Foundation by taking on the London to Brighton ride.

Steve added: “I owe so much to the donor who I know nothing of and without them I would not be leading the life I’m leading. And all this is why I would urge anyone who hasn’t already made a decision about joining the register to take a bit of time to have a really good think about it.”

Steve’s sentiments are echoed by Swansea Bay Organ Donation Nurse Specialist Jessica Becker, one of two members of staff who work closely with potential donors and their families when something awful may have happened and the question of end of life care and organ donation needs to be discussed.

“You can see in Steve’s case, he will never know who made the choice to donate their organ after death, but what he does know is that person has saved his life,” said Jessica.

“There is no greater gift one person can give to another, which is why having conversations around organ donation is so important.

“Community engagement is a huge focus for me in my job, letting people know about the Organ Donation Register, how it takes only two minutes to sign the register but by doing so, you can save up to nine lives.

“I totally understand that talking about death and your wishes after you die is not something many people feel particularly comfortable with.

“We have the soft opt out system but it is much better for people to express their decisions one way or another. It’s not easy to inform a family member that their loved one didn’t actively express a preference. The assumption then is they showed no objection to organ donation but of course, we don’t ever want to push family members to make a decision they feel uncomfortable with.

“This conversation is always done sensitively and in a timely manner, with the dignity and respect of the patient and potential donor and family at the heart.

“But having these conversations when you feel the time is right, to let people know your feelings is so, so important. And then it’s also so important that you take those few minutes to register as a donor or otherwise.

“Last year, more than 4,600 people waiting for an organ transplant had their lives saved by the generosity of 1,510 deceased organ donors and their families who supported organ donation.

“We of course, do not ever think it will happen to us and only around one per cent of people who die in the UK every year are able to donate their organs after death.

“However, if more people perhaps took a little bit of time to think about how they could potentially save a life, and then talk that through with those close to them, the pool of potential would increase and even more lives could be saved.”

Meanwhile in addition to feeling immense gratitude towards his organ donor, Steve is also keen to say a huge thank you to the amazing teams who were with him throughout his transplant journey.

“Doing the British Heart Foundation ride has allowed me to give something back and express my sincere thanks for all the amazing care I’ve received,” he added.

“In the Swansea Cardiac Care Unit, I have the brilliant Dr Andrei Margulescu - who in my eyes is a legend - and Dr Thomas to thank for everything they did for me. All the staff at the unit were fantastic.

“I also must thank the doctors and staff at Harefield Hospital for performing the surgery, who kept me alive after surgery and complications and continue to monitor and guide my recovery.

“A massive thank you to my family and friends who have been there for me and looked after me.

“I’m doing really well thanks to them and others.”

If you’d like to give Steve an extra boost by making a donation to his fundraising for Swansea Bay Health Charity and the British Heart Foundation, go to his JustGiving page here.

• Swansea Bay Health Charity is the official charity of Swansea Bay University Health Board and manages a range of different charitable funds supporting a wide variety of departments and services. We work with individuals like Steve - patients, family, friends, the general public and staff - to raise money for good causes which are not covered by core NHS funding - so that together, we can make a real difference to people’s lives.
• Contact us or go to our website for information on the specific funds to which you can donate.