Patient celebrates 25 years of living with transplanted heart and lungs

Tineke Dixon (41) has celebrated the 25th anniversary of her heart-and-lung transplant, which she received at Great Ormond Street Hospital (GOSH) in November 1988 at the age of 16. 

The hospital arranged a special visit for Tineke to meet with some of the original staff who treated her as teenager, many of whom have since retired. Former GOSH staff members joined the current transplant team in welcoming Tineke and celebrating the anniversary of her transplant.

“The care I’ve had is amazing, there are a lot of contributing factors to my success,” said Tineke.

"I remember when she was being treated here, so it’s lovely to see how well she's doing now," added Mary Goodwin, former Cardiac Liaison Sister at GOSH.

Dr Paul Aurora, Consultant in Paediatric Respiratory Medicine and Lung Transplantation, said: “Transplanting the heart and lungs together is a rare type of transplant, and is now only performed when both organs are failing, as was the case for Tineke 25 years ago. The outcomes following such transplants are poorer than if the heart alone is transplanted, as the lungs are particularly fragile organs which develop rejection and infection after transplantation very easily.

“At the time Tineke was transplanted, only about a third of children receiving lung or heart-lung transplants were able to survive up to five years after the operation. That figure is now more than two-thirds and is continuing to improve. These are all children who would have had a very short life expectancy without the transplant. Just as importantly, the majority of children who receive a heart or lung transplant report a dramatically improved quality of life after the operation.

“At Great Ormond Street Hospital we have a large and dedicated team working in this area, and are striving to improve results further. However, we know that none of this would be possible without the gift made by the families of organ donors, who are able to think of others at a time of great tragedy and sorrow for them. They all have our everlasting gratitude.”

Tineke’s story

Born “a congenital disaster zone” in her own words, Tineke is alive today because of the new organs in her body – a heart and lungs given to her in 1988, and a kidney donated by her mother ten years later.

Tineke 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. She spent most of her youth on oxygen and doctors did not expect her to live past her teenage years. But when she was 16,

Tineke underwent a successful six-hour operation at GOSH to receive a new heart and lungs.

Tineke says: “It was an emotional time and I remember it vividly. I even remember meeting Princess Diana when she came to visit the hospital [in November 1988]. She came to the ward and said hello to me, and I gave her a Christmas card on behalf of the other children.”

“After my operation, I had a punctured lung and had to spend Christmas in hospital. My mother kept the Christmas tree standing until I was well enough to return home, though by then half of the needles had fallen off.”

Tineke recovered well and began a degree course in medical physics at the University of Exeter, later going to obtain a PhD at Cambridge University, School of Clinical Medicine. She is now married and based in Exeter.

From left to right in the photo above - the original team who carried out the transplant in 1988: consultant cardiac surgeon Martin Elliott; Tineke Dixon; cardiothoracic surgeon Marc De Leval; cardiac liaison sister Mary Goodwin; consultant transplant cardiologist Phil Rees.