GOSH patient celebrates 35-year anniversary of heart and lung transplant

20 Nov 2023, 9 a.m.

Tink is wearing a pink t-shirt and stood in front of the steering wheel of a sailing boat. There is blue sea and sky behind her and a small yellow boat in the background

A patient has celebrated the 35th anniversary of their heart and lung transplant – making them GOSH’s longest surviving recipient of this kind of transplant.

Tineke, known as Tink, says there are no words to explain how grateful she is to the organ donor family for allowing her to reach the 35-year milestone earlier this year.

Each year she celebrates her transplant anniversary with her friends and family and wants to raise awareness of how important organ donation is.

Tink’s story

Tink was first seen at GOSH when she was around two years old and was under the care of Dr Richard Bonham Carter. She was born with two holes in her heart which developed into a rare condition known as Eisenmenger Syndrome, causing her lungs to begin to fail.

Initially there were no treatment options, but in 1988 the cardiothoracic transplantation programme was set up at GOSH. Consultant Transplant Cardiologist Phil Rees suggested this possible treatment option to Tink and her family.

When she was 16, Tink became the third patient to have a heart and lung transplant under the programme, with Professor Marc de Leval and Professor John Wallwork from Papworth Hospital. The operation took six hours.

She remained at GOSH for two-and-a-half months and continued to be monitored by the team. During this time met Princess Diana and gave her a greetings card on behalf of other children on the Waterston ward.

Tink continued to be seen by a team at the Papworth Hospital as she transitioned to adult care. She needed a kidney transplant in 1998, which was donated by her mum.

Tink, who says she has been extremely fortunate, was able to go to university, complete her PhD at Cambridge University School of Clinical Medicine, have a family and enjoy hobbies such as sailing her boat.

Tink is standing on a boat in front of a pink sail. She's got a leg and arm outstretched and she's wearing sailing gear and a hat

Tink sailing her boat

You’re not just talking about saving a life – you're talking about saving a lifetime

Speaking about how grateful she is to the donor’s family, Tink said: “It’s hard to articulate, it’s not something you can quantify. We used to have organ donation adverts on TV saying how many lives could be saved, but you’re not just talking about saving a life for few years – you're talking about saving a lifetime.

“The potential for patients getting a transplant now is amazing compared to patients back in the 1980s, so the gift of organ donation today is even more important for patients on the transplant list today.

“It’s given me my life, it’s given me time with all my friends and family, time to achieve things. It’s so far reaching.

“My gratitude for that is difficult to express, there are no words for it. I do think about it a lot, how grateful I am to be here and have that opportunity.”

Tink is sitting in  ward with a t-shirt next to Dr Rees who is wearing a white overcoat. There is medical equipment behind them and both are smiling at the camera

Tink with Dr Rees after her operation

Attending the Marc de Leval Memorial

Earlier this year Tink and her mum, Anna, were reunited with members of the Heart and Lung team at GOSH at the Marc de Leval memorial.

Tink said: “It was terrific to get that chance to see everybody again, and in a small way I think they appreciated seeing me there and seeing me doing so well.”

Tink in her hospital bed and Marc de Leval is speaking to her. He's wearing a white surgical cap and facemask and a blue shirt and green tie. They are surrounded by medical equipment

We are incredibly grateful to all the donor families and the families we care for

Consultant Martin Kostolny is Head of the Cardiothoracic Clinical Service and performs more than 200 operations a year.

He said: “A huge number of teams from across the hospital and wider NHS work together for months, and in some cases years to make heart and lung transplants possible. Over the past 35 years we have seen huge improvements in the outcomes for children having heart and lung transplants, thanks to advancements in research, treatments, and technology.

“This progress wouldn’t have possible, however, without families making the incredible but difficult decision to donate the organs of their loved ones.

“We are incredibly grateful to all the donor families and the families we care for, and hope Tink’s tale can be an inspiration to them.”

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