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Waiting in hope for help: One Sussex person a month dying while on transplant list
2:00pm Sunday 14th July 2013 in News
Time is running out for Holly Pereira.
The 20-year-old has been waiting one year and two months for the double lung transplant she desperately needs.
Holly has cystic fibrosis and managed to keep relatively healthy while she was growing up, but the years are now taking their toll.
In the last year Holly’s condition has deteriorated and she now has to have oxygen all the time.
She also has to use a wheelchair when she goes out and has been told her lungs are only working at 15% capacity.
It means she is likely to only live a few years longer if she does not have the operation.
Holly, who lives near Uckfield, carries her phone with her all the time in the hope the vital phone call will come through.
Hopes were raised last month when Holly was told a pair of lungs had become available, but unfortunately it turned out they were not going to be suitable for transplant after all.
However, Holly has refused to let her situation get her down and is determined to keep on raising awareness of the importance of donation.
She said: “Although my transplant didn’t go ahead, I still regard that family and donor as heroes, as they had said yes to donation and could have givenme my second chance at life.
“They will forever be in my thoughts and heart.
“I would like people to really consider signing up to be an organ donor in the event of their death, or to ask themselves the following question: would they, if put in a situation where receiving a lifesaving organ would be their only chance of survival, accept?
“Because maybe if you think you would accept, then you should be willing to donate.
“You could be saving a number of people’s lives and changing them for the better.
“The most important factor about signing up to become an organ donor is that you must discuss your wishes with your loved ones, because they still have the last say in what happens to your organs.
“It’s the most amazing gift that anyone really could ever give.”
Holly is one of 218 people across Sussex who are waiting for a transplant, according to figures from NHS Blood and Transplant.
Over the last four years, 55 people in the county have died while waiting.
However, since April, 23 have received the all-important phone call and gone on to have their transplant.
NHS Blood and Transplant is using National Transplant Week to add to the 567,981 people across Sussex who are already signed up to the register.
This year’s theme is Pass It On, stressing the importance of having a conversation about organ donation as well as joining the register.
While 95% of families agree to donation if a loved one has discussed their wishes and is registered, this drops to only 46% when donation wishes aren’t known.
Sally Johnson, director of organ donation and transplantation for NHS Blood and Transplant, said: “We need a transformation in donor and family consent to organ donation because the UK’s family refusal rate remains one of the highest in Europe.
“For this year’s National Transplant Week we hope the people of Sussex will Pass It On. We want everyone to be proud of our donation record in the UK.”
The figures have also reignited the debate calling for presumed consent, where people opt out of joining the organ donor register instead of signing up for it. The system is due to be introduced in Wales in 2015.
Little Keira Royds-Jones, six, from Hove, is this week celebrating the first anniversary of her liver transplant.
The youngster was born with a rare genetic condition called Alagille Syndrome, which affects one in 70,000 people.
It left her with liver, heart and sight problems while she also had to take extra care because her bones would break easily.
She was put on the transplant list at the end of 2011 and a liver became available in July 2012.
Since then she has never looked back and is full of energy.
Keira’s mother Kirsty, 36, said: “She is a completely different child and we are so grateful to the family who agreed to organ donation.
“I am in favour of the idea of opting out rather than opting in. It is a really good idea.
“Before I had Keira I had never thought of organ donation but if you had asked me I would never have opted out. I’ve signed up now but that was because of my own experience.
“I think if you feel strongly enough about the issue and don’t want to be on the register, then you will make the effort to make sure you are not on it.
“However, I think the vast majority of people are pretty much in favour but have just not got around to signing up.
“However, as our experience shows, it makes all the difference in the world.”
Talented teenage footballer Connor Saunders, 19, died last year after an incident outside Tesco Express in West Street, Rottingdean.
When he was on life support his family was faced with the decision over whether to allow his organs to be used and discovered he had already signed up to the register when he was 16.
He went on to save the lives of five people.
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