Norfolk teen on life after double lung and heart transplant

Natasha Storey, who is about to celebrate her 10-year anniversary of having had a heart and lung transplant and has just got engaged to Ben.Picture by SIMON FINLAY. (Image: Archant Norfolk.)

Natasha Storey, received a double lung and heart :

'My brain tends to block out the worst memories like the pain, but I know Mum remembers every last minute of it all.

'I tend to remember the best parts – the people I met in hospital who became friends, the lovely nurses and doctors, the laughs we had. I left school in the middle of year 10 because I was so ill and I only went back to visit once – I was in a wheelchair and everyone crowded round me. I hated it and never went back.

'When I was told I needed a transplant, the doctors thought I only had seven months left to live. Waiting for the bleeper to go was torture and the first time it did and we rushed to Great Ormond Street to be told that the operation couldn't go ahead was heartbreaking – I think that was the worst time.

'It was like being given hope and then having it snatched away again. It was a miserable Christmas. We waited until July before another donor was found and by that time I was in bed, breathing was a struggle and I was feeling terrible. When the call came, we were at the cinema in Norwich about to see War of the Worlds – I had to wait for it to come out on DVD before I got to see it because we raced home and an ambulance was waiting for me!

'When we got to hospital, there was the fear it could all happen again, that I'd be ready and then the doctors would tell me it couldn't go ahead. I don't remember a lot about the operation or the next few days, but I remember slowly getting better. My toes were pink and not grey, I could walk a little, small things but a big deal to me!

'A year to the day after my transplant I was diagnosed with Non-Hodgkins Lymphoma – one in 10 transplant patients go on to get it, but it was still devastating because it meant going through chemotherapy just as I was starting to feel better. I had chemo for seven months and it was OK – I wasn't sick and I didn't lose my hair, although I thought I was going to, so I'd dyed it what turned out to be a very unflattering gingery colour, thinking it would all go!

'I had my all-clear in 2007 and still have my yearly check-ups but I'm fine, my health is almost normal. I still get out of breath faster than most people and my heart beats faster than normal but that's it – in all other ways you wouldn't be able to tell. They say the heart and lungs will last me for at least 15 if not 20 years – it's a bit scary if you think I've already had 10 years, but you have to take each day as it comes.

'I'll be celebrating with a party at the weekend where everyone will be letting off helium balloons with messages written on them. I've had 10 great years – I respect my life a lot more than if this hadn't happened to me and I feel that I really have to look after these organs that have been given to me as a gift.

'I know a bit about my donor. He was called Ryan, he was 11 years old and he had two sisters, one younger and one older. He died of a brain aneurysm at a school sports day and his parents decided to make the brave decision to allow his organs to be donated so that people like me could live.

'I wrote his parents a letter when I was better, telling them how grateful I was to them and that I owed their son my life and I would make sure that I would look after the piece I had of their boy and I would live my life for both of us. I've found out a few things about Ryan – he loved animals, and so do I and our birthdays were just a day apart.

'His name is tattooed on the back of my neck – I think about him every day. I've got a little photograph of him on my bedside table and every time I see it, I feel grateful to him and to his parents, who made the hardest decision at the hardest time of their lives. Ryan didn't only save me, he saved two lives – he died a hero.'

Debbie Storey, Mum: 'We all put up a front when Natasha was ill because if one of us fell apart, we'd all fall apart. It was about protecting each other – you don't break down in front of another family member, you hold it together. If you were going to break down, you did it on your own.

'We had some really nasty scares as we waited for the transplant and the pressure was intense: even mixing the drugs that Natasha needed every day took one of us an hour at a time, and we had to get it just right. After the scare in December, when the call came in July there was a mix of hope and fear – those six hours when she was in surgery were the longest hours of my life. It felt as if time was standing still.

'I could never allow myself to think the worst, I had to think the best. You also think of the family who have lost a loved one and who are giving your child the chance to live and what an incredible gift it is. I can never thank the donor family enough.

'Since the transplant, Natasha has done so much with her life. She's been to college and university, she's learnt to drive, she's done two sky-dives, she's gone travelling and she's swum with dolphins. She has taken all the opportunities that have been offered to her and she's lived life to the full. When I think of how much she's achieved, I am so proud.

'I just wish more people would sign up to organ donation. If you or your child was desperately ill, you'd accept an organ from someone else in order to keep them alive – so it stands to reason you should be prepared to be an organ donor, too.'

Keith Storey, Dad:

'When she was younger, she was like any other normal child, full of fun, into everything like her big sister Samantha. But as she got older, we realised that she was out of breath quite quickly – but we had no idea she was really ill.

'We got right down to the wire with her, to the point where we were talking weeks and not months for her to live unless she had the transplant. In December 2004, we got all the way to Great Ormond Street Hospital only to find out that the lungs they had had failed the test. Words can't describe it.

'In the following July, the transplant went ahead: it was like having your wish granted at last. No parent wants to see their child suffering and no parent wants to hear that their child could die. When I look back to 10 years ago, I can't believe we've come this far. We are so grateful to everyone who helped her get where she is today.'

Ben Leggett, fiance: 'We met on a night out in Great Yarmouth about two years ago and hit it off straight away. On our first date, she told me about the transplant. I was fascinated, amazed and obviously a bit worried on her behalf but it didn't bother me, it's just Tasha.

'Straight after our date, I registered as an organ donor. I'd always meant to, but she gave me the push I needed.

'What I love most about Tasha is her personality and her outlook on life. She's so positive and happy and, of course, she's drop dead gorgeous, too! I proposed at Filby Broad as the sun went down – I told her how much she meant to me and then went down on one knee and did it all properly. We haven't set a date, but I know I want to spend the rest of my life with her. She's amazing.'

To find out more about organ donation, visit www.organ donation.nhs.uk or call 0300 1232323.