Organ donation confusion leaves man facing uncertain future

Carolyn Thomas's 24-year-old son, Dan, lives with chronic kidney disease and will need a kidney donor - but currently none are available

After meningitis left him with chronic kidney disease, a 24-year-old faces an uncertain future waiting for a kidney donor.

No suitable donors are currently available, despite Wales being the first nation in the UK to introduce an opt-out organ donation system in 2015.

More than 200 people have died waiting in the past decade, and more than 300 remain on the list, according to the NHS, with misconceptions about the law blamed for the figures.

Dan's mother, Carolyn Thomas, from Efail Isaf, near Llantwit Fardre, Rhondda Cynon Taf, is raising awareness to "spark conversations" about organ donation and educate people on registering, in the hope of finding a match for her son.

Currently, in Wales, adults who have lived in the country for more than 12 months are considered organ donors unless they opt out.

Consent can be given by registering or by doing nothing, but families still have the power to refuse donation if their loved ones did not opt out - which is causing the problem.

Ms Thomas said that after contracting meningitis in 2020, Dan needed a muscle transfer in his right arm and ankle fusion surgery, but "he's the most amazing person you'll ever meet -you wouldn't know anything was wrong with him".

While a healthy kidney filtration rate for someone of Dan's age is more than 100, his is just 20, with anything under 18 considered critical.

His consultant wants a transplant before dialysis becomes necessary, as long-term dialysis often leads to poorer outcomes, she explained.

Ms Thomas told BBC Radio Wales Breakfast: "We're not quite sure when Dan will need a transplant – it could be in six months, or it could be in a year."

But the situation is "quite difficult", as she cannot donate due to her breast cancer history and her husband is also unable to for medical reasons.

"It was really devastating, we felt so helpless," she said.

Many of Dan's friends and their parents have also been tested, but no suitable match has been found.

For someone his age, the best outcome comes from a live donor, although Ms Thomas explained "they are very few and far between".

She said many people do not realise it's possible to "live a normal life with one kidney", highlighting the need for more education on live donation.

Her hope is to spread awareness so more people join the register or even consider becoming live donors.

"Organ donation is the greatest gift someone can ever give," she added.

People assume the law automatically registers them for organ donation, but that's wrong

Charlotte Charles-Williams, a lead organ donation nurse for south Wales, said the situation in Wales is "quite concerning".

Many assume the law automatically registers them, but she stressed that signing up is still necessary, as families are more likely to support donation if they know their loved one's wishes.

Currently, only about 50% of families support organ donation after death due to the "element of uncertainty", Ms Charles-Williams explained.

Although families can sometimes override the decision, she said discussing your wishes while alive removes "doubt" and can help save lives.

To raise awareness of organ donation, Ms Thomas said the community will gather at Garth Hill in Efail Isaf on Friday, lighting it up in pink and forming a "giant pink heart" to symbolise donation.

She hopes the event will encourage more people to register and talk to their loved ones about their wishes.

How do I register for organ donation?

Ms Charles-Williams said the easiest way to register as a donor is online, or by calling 0300 1232323.

She stressed the most important step is talking to loved ones and making sure they know your decision.