From the Heart: Life on the transplant waiting list

Bernice Perry, 21, has been on the transplant waiting list for months. Photo: ITV News

We should have met Bernice Perry at home. But the day before, she was so ill she had to be brought into Papworth Hospital. That’s been the pattern of Bernice’s life for the past few years. In and out of hospital a dozen times a year.

When we meet in her room at Papworth, she’s bright and laughing all the time. She’s also very beautiful - a waif-like young lady with a shy, winning smile.

That she can laugh is a tribute to her spirit. Because Bernice has Cystic Fibrosis and has been on the waiting list for a heart and lung transplant for months.

Cystic Fibrosis is a genetic disease that affects the lungs - people with it can’t clear their lungs of the mucous that builds up naturally. There are treatments (like massage to loosen the mucous), but in the end, the only “cure” is a transplant.

Without a transplant, people with Cystic Fibrosis rarely survive very far into their twenties. Bernice is 21.

She’s been on the waiting list at Papworth (along with 86 other patients) for just a few months - the average wait is over a year. Nationally, about one in six patients on the waiting list die before a donor heart can be found.

Amazingly, the number of heart transplants carried out has declined since a peak in the nineties. There are now about 100 a year across the country.

Bernice is an amazingly resilient and cheerful person. As we chat, she tells me she has the same birthdate as David Beckham. I find I’m welling up (not for the first time in the last week), hoping that she will share many more birthdays with the former England captain.

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