I’m now 30 years old and I was born with Cystic Fibrosis. The main problem with Cystic Fibrosis is that it causes progressive damage to the lungs. However, about 10% get liver disease too, and unfortunately I was one of them. By the time I was 15 my liver was cirrhosed and I needed a liver transplant.

I sat 11 GCSEs while at the same time waiting 18 months for the call to say that there was finally a liver available for me. I found out after the operation that if the organ hadn’t become available when it did, I would have had between 3 days and 3 weeks left to live.

The liver transplant was a success but the general anaesthesia during the lengthy operation had done further damage to my lungs. Two years after the initial liver transplant, I received a new heart and a new pair of lungs. As my original heart was unharmed, I was able to donate my heart to someone else who needed it for a Domino transplant.

Having recovered, I returned to University to finish my first degree in Neuroscience at Cardiff University, graduating with a 2:1 with honours. I then went on to study Medicine at Cardiff University, School of Medicine. About half way through my fourth year I had to leave due to kidney failure and had to start haemodialysis three times a week.

I was on dialysis for fifteen months before receiving a kidney donated by my father in December 2006. They initially refused to offer me a kidney transplant, regarding it as too risky for me to have a general anaesthetic, as it would have meant a lifetime of dialysis. I had to give up my medical studies, as I was too ill.

After six months of persuasion the doctors agreed to my suggestion of having the kidney transplant under a spinal/epidural anaesthesia which meant I would be awake whilst they inserted the new kidney. I chatted away and listened to my iPod during the operation! Going against doctors’ advice was a big risk, but life is all about risks. Thankfully, it was a success and I was out of hospital in three days.

After the transplant I became more and more involved with the charity Kidney Wales Foundation, before eventually becoming an ambassador for the charity. I led a successful campaign last year for five months called the ‘People Like Us’ campaign run by Kidney Wales.

The campaign had four key aims, one being very close to my heart – to increase the number of people on the organ donor register and introduce legislation for presumed consent.

The campaign secured a £100,000 grant from the Welsh Assembly Goverment to promote and increase awareness of Organ Donation. Using this funding, the Tell a Loved One campaign was set up.

In September this year, I resumed my medical studies at Cardiff University. I’ve been back for almost three months now and I’m really enjoying it. I’m still very passionate about organ donation – without those families making that difficult decision of donating their loved ones’ organs and people making the effort to register as an organ donor, I wouldn’t be here today.

After my transplant, I found out that my liver came from an eleven year-old girl who died horse-riding and helped to save seven people by donating her organs. I wrote a letter of thanks to the family after the operation, expressing my gratitude and explaining that the liver meant that I was able to return to University and live my life.

About a year later I received a letter from the family explaining that it had helped them so much to know that those who had received the organs now had a future because of their little girl. They also said that it had confirmed that they’d made the right decision by donating her organs. I also keep in touch with the gentleman who has my heart. He’s doing well and my family and I have been to stay with him and his family twice and they’ve also visited me here in Wales.

I would advise anyone who’s currently waiting for an organ transplant to always remain positive and focused. It’s easy to lose hope but I’m a firm believer in positive thinking. It’s worked for me anyhow. Waiting for a transplant is hard; those waiting for a kidney can at least take solace in the thought that they can have renal replacement therapy or dialysis until a suitable kidney is found. With a heart, lungs or a liver, there is an automatic time limit imposed on your life.

I’ve lost many friends on the waiting list for a transplant and losing them was awful. I remember whenever the phone went late at night or in the middle of the night I’d always get my hopes up that an organ was available. When you can see your time is running out, you become so desperate that you start hoping around Christmas, Easter or bank holidays that this could be your chance, as there’s often more accidents around that time. Unfortunately someone has to die before you get that chance of a transplant, except for live donation which is only performed with kidneys.

I’ve always been an ambitious person and have succeeded at most things I’ve wanted to do, even if some of them took longer to accomplish than it would have for people without Cystic Fibrosis. Having gone through so much, I’m probably a stronger, more determined person and I also think I’m more focused upon achieving what I want out of life.

I’ve recently just come back from London after winning Cosmopolitan magazine’s Ultimate Survivor award, which was presented to me by Vernon Kay. Looking on the positive side, I would never have had that opportunity to meet him without going through all my transplants!

I think that organ donation is something which hasn’t directly affected most people, neither do they know anyone who’s waiting for or has received a transplant. This results in the majority of the public being unaware of the severity of the situation. When asked, nearly 90% of Wales claimed to support organ donation yet only 27% are on the Organ Donor Register.

We all live busy lives and it is something many haven’t got round to doing or haven’t thought about. That’s why its so important to raise awareness of the issue through real life stories on TV, radio and newspapers highlighting the positive effects that a transplant has and the dramatic change it can have on a person’s life and their family. What people don’t realise is just how likely they are to need a donated organ at some point in their lives, whether it be a kidney or a heart.

After months of listening to evidence from different groups, much deliberation and trips to Spain, the Assembly’s Health, Well-being and Local Government committee recently rejected the idea of presumed consent. The committee decided that switching the rules around would be a “distraction” from efforts to encourage more people to sign up.

Its report also suggested that public opinion was not ready to make the switch. It’s about time that we saw better leadership on this issue. For the report to conclude that presumed consent is not seen as a priority at this time is like telling a family that their loved one’s life is not seen as a priority.

While the committee says that now is not the time to introduce presumed consent, our campaign supporters are left thinking ‘when will be the correct time?’ Is it really necessary for more people to die whilst the health committee deliberates further?

I think it is an issue that hasn’t had enough time or money spent on it in Wales until last year when the Health Minister, Edwina Hart AM started listening to our plea during the ‘People Like Us’ campaign.

The Minster and the Welsh assembly are keenly working with charities to raise awareness of the issue of Organ Donation. The Tell a Loved One Campaign is a unique campaign with 9 different charities working together with the Welsh Assembly to increase the number of people on the register.

We’ve been fortunate too that many Welsh celebrities such as Colin Jackson, James Hook and Max Boyce came onboard to help spread the word and make a very successful TV advert to highlight the problem.

The Minister’s response to the health committee pointed out that the report did not reflect the range of different views on the question. In short, that the health committee had ducked the issue. I’m pleased we have a Minister who has the strength to move forward in these issues.

From my experience, though many students tend to be quite clued up on organ donations and its benefits, there is still a long way to go. Talking to my fellow medics, many of them are still unaware of the benefits of transplantation and have not thought about being an organ donor. Kidney Wales are currently looking to set up a campaign team within the University to help raise awareness of the shortage of people on the Organ Donor Register.

The Labour Students are already onboard and we are hoping to set up a sign-up station and a public debate on presumed consent at the university during early December. Kidney Wales are currently trying to get more students involved with the campaign, so hopefully reading real stories like mine will inspire people to register.

It literally takes a couple of minutes to do and, of course, please discuss it with your nearest and dearest as they can still overturn your decision.

Signing up to donate is free, simple and only takes a few minutes. Either visit donatewales.org or text ‘GIVE’ to 64118.



"...always remain positive and focused. It’s easy to lose hope but I’m a firm believer in positive thinking.."

-Alison John-