A year ago, cystic fibrosis sufferer Katie Lloyd was confined to a wheelchair needing 24-hour oxygen. But, thanks to a double lung transplant, she tells Rachel Mainwaring she now has a new lease of life

WHEN Katie Lloyd was growing up she was determined to be like all her classmates.

Despite being diagnosed with cystic fibrosis at four months old, and having to spend weeks at a time in hospital throughout her childhood, she never wanted to be treated any differently.

But it was when she reached her mid-teens that she realised just how serious the condition is and had to cope with the symptoms getting progressively worse.




Katie, 23, from Bridgend, says: “I knew I was a bit different because I had to go back and forth to hospital and sometimes even went to school with my intravenous antibiotics attached to my arm but I didn’t think much about it. It was all I’d ever known after all.

“But when I reached the age of about 15, I started to realise that having cystic fibrosis was serious. That’s when I started to understand a bit more that there was something wrong. I just wanted to get on with it. I used to do everything. I love singing and I didn’t want it to stop me doing anything.

“But the hospital visits started to get more and more frequent and I gradually started to feel worse and worse. I used to go four times a year, and then it was every two months.

“I used to get a really bad cough and get very out of breath. I’d feel generally unwell, I’d have no appetite and so would start losing weight and I used to pick up colds really easily.

“Then oral antibiotics weren’t strong enough so I would have to have them administered intravenously for a fortnight and would sometimes be in hospital nine or 10 times a year. I hated it. I wasn’t a good patient.”

Katie managed to get 11 GCSEs before studying English, Welsh and Computing A-levels at Bryntirion Comprehensive but she was very poorly by the time she hit 18.

She barely had the strength to do her own hair or laces up after picking up a bug which made her lung function even worse than it had been.

If she didn’t consider having a lung transplant, she might not survive: next page

That’s when doctors gave her the real hard facts – that if she didn’t consider having a lung transplant, she might not survive.

“That’s obviously a very difficult thing to hear. It was awful, I was so young. I knew I was bad but I was still able to do some things like other people my age, like going to the cinema but it is a progressive illness and I knew it was getting worse.

“That’s when they first mentioned the word transplant. I was studying Education at Swansea Met and was determined to get my degree but it was hard and I had to travel from Bridgend. There was no way I could have moved out because my mum does everything for me.

“By the time I was 20, my oxygen saturation levels were getting very low. I was constantly in a wheelchair because I was too weak to walk and I was having oxygen 24-hours a day. I managed to get a 2:1 but when I saw the specialist at Harefield Hospital in April 2010, I was so poorly I agreed to go on the transplant list.

“It was a very frightening time. I was in limbo. I told people that no-one could phone me after 8pm because the transplant team tend to ring late in the evening or during the night.”

Six months later, on October 28, Katie got the all-important call and she was transferred to Harefield Hospital, London, for a double lung transplant.

“When I got the call it was very surreal. I had been so ill that a few of my friends had arranged an Ann Summers party at my house to cheer me up. And that’s when I got the phone call so it was really strange. The ambulance came and picked me up at 8.49pm and by 8.30am the next morning I was having the operation.

“It’s supposed to take six to eight hours but for some reason I was in theatre for 12 hours and my poor mum and sister Sam didn’t know what was happening. They were panicking but all went well and my recovery is going well.

“But it is very hard, both physically and emotionally. I was in for six weeks and had to learn how to walk and talk again. It sounds strange but I also had to learn to cough, even though I never felt like I needed to anymore.

“Emotionally, it’s been very difficult. I feel guilty for the lady who donated the lungs. All I know is that she was 41 but I feel guilty that I am alive and she isn’t. It’s kind of like a post-traumatic stress.

“I also feel guilty for my other CF friends who haven’t been so lucky. I’ve made friends all over the world online and the social media has been brilliant because CF sufferers are not allowed to meet in person because of the bacteria we carry in our lungs.

“My goal now is to go back to university and become a primary school teacher. I still have other issues like osteoarthritis and my mobility isn’t great but I’m taking my time to get better.”

* Right now more than 8,000 people in the UK need an organ transplant that could save or improve their life, but each year around 400 people die while waiting for a transplant. If you want to help someone live after your death, sign up to the register now.

Organ Donor Line 0300 123 23 23