Nicola Langlands, 32, of Pevensey Bay, was born with two heart chambers and one valve, half of the heart she should have had.
She was the 12th child in the UK to have the double transplant, which she was given at Harefield Hospital in Middlesex.
Nicola, now a wife and mother to 10-year-old Megan, said, “Last October I became very ill and was taken in to Harefield again.
“At that time in my life I started to think really hard about the transplant, how it really had affected me and how it would be good to meet and talk to people who have also had transplants.
“So when I got home I set up a website for adults and children who have had a transplant, to help them deal with issues that may pop up after their transplant and most of all to make new friends.
“I myself found it very hard to deal with not be able to talk to someone like me who had a transplant, just to know that there was someone out there that was also going through what I went through.”
September 17 marks the 19th anniversary of Nicola’s transplant and she wants to celebrate by getting more people to join the website, www.lookbeyondtheheart.com, and help her fundraise so she can put posters about the website in all the UK’s transplant units.
She eventually wants to register Look Beyond the Heart as a charity, which will cost £5,000, and help to pay for wheelchairs, equipment and days out for members.