Young cystic fibrosis sufferer who planned his own funeral having been told he would not see his 21st birthday celebrating after receiving last minute double lung transplant

March 31, 2015 | by | 0 Comments

A young man who planned his own funeral has received a life-saving lung transplant just hours after his mum — prayed for a MIRACLE.

Levi Haines pictured with his mum Tracey Tookey  (Lucy Blake / SWNS)

Levi Haines pictured with his mum Tracey Tookey (Lucy Blake / SWNS)

Doctors told brave Levi Haines his cystic fibrosis would kill him before his 21st birthday unless donor organs were found.

Levi’s family even requested an advance copy of the new Star Wars movie as he was not expected to survive to watch it at the cinema.

He had been on the transplant list for six months and, with his lung function dropping to 20 per cent, Levi’s time was running out.

Levi’s mum Tracie Tookey, 46, took to Facebook informing the family that they “needed a miracle” – and just hours later received a call to say a match had been found.

Now, following a successful 10 hour double lung transplant, Levi, 22, is looking forward to a bright future.

Levi, who had suffered cystic fibrosis since birth, said he hoped his remarkable turnaround in fortunes would inspire other cystic fibrosis sufferers not to give up hope.

He had planned his own funeral, and his brother Josh, 19, called Lucasfilm for an advance copy of the new Star Wars movie, worried his brother wouldn’t make it to Christmas.

Levi said: “I want to hold down a job and learn to drive, just normal stuff which everyone else takes for granted.

“I can see the CF team’s excitement with me at Derriford Hospital because they work with so many people who don’t make it. I have grown up with them and they have been amazing.

“I want to say to other CF sufferers – don’t give up. Keep going as long as you can. If you’re thinking about going on the transplant list, it’s a life changer.”

Levi Haines is recovering after a double lung transplant  (Lucy Blake / SWNS)

Levi Haines is recovering after a double lung transplant (Lucy Blake / SWNS)

Levi said he had kept his phone under his pillow so he wouldn’t miss a call if it came, and it rang at 3am in late February.

He was whisked into surgery at 2.30pm the next day, at Harefield Hospital in London.

He said: “When I was a child having cystic fibrosis was fine. But later the teenage rebellion kicks in and you want to stay out with your friends. I wasn’t very compliant. The doctors told me I needed to turn it around.

“When I was 19 they told me I wouldn’t see my 21st birthday.

“I was well enough to go through it but sick enough to need it. I wasn’t really having any quality of life. My life was just to do my medication.

Levi lives with mum Tracie, stepdad Glenn, brothers Tom, 13, and Zack, 8, in Plymouth, Devon.

Speaking of her joy about the transplant, Tracey said: “It was one of the few things in his life that’s gone right. He had the right blood type and the other tests were fine.

“It was very emotional because someone has had to say goodbye to a loved one so we can hang on to Levi.

“Things can change very quickly and there was a fear the lungs might not be suitable.

“We had a family hug and all cried for the donor and the sadness that family must have felt.

“The doctors kept saying what a superhero he was. He should have been in intensive care for a week but he was there for two days.”

Ten hours later Levi came back from surgery and has continued to gain strength ever since.

He said: “I was very out of it at first. I was on a ventilator and couldn’t talk and couldn’t see.

“I used to spend hours a day taking my medication, but now my medication takes one hour in total. I’m getting better every day. It could take me weeks to get to full strength.”

Levi’s lung function is already at 47 per cent and while he needs to watch what he eats, be careful in the sun and steer clear of people with coughs and colds, is looking forward to the future.

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