I've had two heart transplants - now my son may need one and I'm terrified

A dad who has needed two life-saving heart transplants says it was "the worst day" of his life to find out his son has the same condition.

Rhys Llewellyn, 40, was diagnosed with dilated cardiomyopathy as a baby after struggling with breathing and putting on weight.

Doctors predicted he wouldn't make his first birthday, but he battled on and had heart transplants when he was aged 25 and 35.

Now a dad, he described the terrifying moment doctors told him his son Albi Rhys has the same condition, which affects the heart's ability to pump blood.

Rhys had his second transplant just after his Albi's first birthday, and described writing farewell notes to family as he travelled to hospital in case he didn't make it.

"Finding out that Albi has the same condition as I do was the worst day of my life," said Rhys, from Aberdare, Rhondda Cynon Taf.

"I wanted nothing more for him to not have to go through what I have.

"At the moment, he's doing really well, but there's a chance that he's going to end up needing a transplant, too, and that's a terrifying thought."

Despite his consultant's grim assessment, medication and regular check-ups helped Rhys defy their prognosis.

He lived a relatively normal life, playing rugby and football in his childhood, before passing his GCSEs and starting work.

But in 2011 he started feeling weak and tired, looked pale and suffering from dizziness, headaches and regular chest infections.

Then, at the age of 25, he was told he would need a heart transplant.

"This was a huge shock. I had grown up knowing that a transplant was the only 'solution' for my heart condition but as a family, we never spoke about it," he added.

"We didn't think it would really happen. I remember sobbing in my bed, thinking that this shouldn't be happening to a 25-year-old."

He underwent his first heart transplant in October 2011, but just five months later, narrowing was discovered in his arteries.

Rhys still didn't slow down and eight weeks after having three stents fitted he was climbing Yr Wyddfa, or Snowdon.

In dilated cardiomyopathy, the muscle walls of the heart become stretched and thin, so they cannot pump blood around the body properly, according to the NHS.

It leaves people at greater risk of heart failure.

There are a number of factors that affect whether you get it - such as inheriting a mutated gene, a heart valve problem, a viral infection that causes inflammation of the heart muscle, or an unhealthy lifestyle.

It is estimated to affect 260,000 people in the UK, or one in every 250.

Rhys met fiancee Sarah and continued living life to the full, but a routine appointment in December 2019 showed the narrowing was getting to a dangerous level, and he would need a second heart transplant.

He was added to the waiting list, before welcoming Albi to the world in November 2020.

Just after his son's birthday, he went in for the operation, and said: "As we drove to the transplant centre, I wrote notes and letters to family members, with information like passwords and funeral wishes, in case I didn't make it.

"It was an anxious, emotional time and there were lots of tears from me.

"It felt like there was more to lose this time, with having Albi."

While the operation went to plan, the heart didn't work as well as it should straight away, and Rhys was very ill.

He spent nine weeks in hospital during Covid, so didn't see Albi for 47 days.

"The day I got to see him again was emotional, it felt like another step closer to normality," he added.

"I can now live a normal life and that is only thanks to the extreme generosity of two families, who made that brave and selfless decision to donate on one of the hardest days of their lives.

"I'm extremely grateful. It's because of them that I've been able to have my son – and to continue to be a dad to him."

Albi is currently doing well, but Rhys is worried he may one day have to follow his journey and they will have to wait for a heart to become available.

He said more people signing up to the organ donation register would be the "best Father's Day gift I could ask for" this Sunday.

All UK nations now operate an opt out system - where you are considered to agree to become an organ donor when you die unless you have recorded a decision not to donate.

Even so, NHS bodies still encourage people to sign a register as it provides explicit, legally binding consent and removes any burden from family members.

"Rhys' story really showcases the importance of organ donation and the difference it can make – not only have two extremely generous families saved Rhys' life, but they've allowed Rhys to have a son and be a father to him," said Anthony Clarkson, director of organ and tissue donation and transplantation at NHS Blood and Transplant.

"There is no more precious gift.

"Sadly, not everybody will get this same chance – the transplant waiting list is at its highest ever level and we need more donors than ever before."