Just 12 months after her liver transplant Clare completes the 2011 BUPA Manchester 10k race in 67 minutes - like the tin foil Clare!

About seven years ago (2004) I thought I was going out of my mind, I was so tired and itchy all the time life was becoming unbearable. I tried all sorts of things to help from anti-histamines to food allergy tests; I went to the doctor who thought it was scabies and then realised it wasn’t. Eventually I was sent to see a skin specialist who could not understand why I had been sent to him as there were no outward signs of skin decease. He sent me for blood tests and after the usual wait I was asked to go back to see a different specialist for the results as they had found a problem with my liver function. In all this took over two years to diagnose, It was a terrible time in my life as I had contend with all of these symptoms whilst still trying to function on a day to day basis. I can honestly say I had not had a proper night’s sleep in years and with sleep deprivation comes depression, fatigue and grave thoughts about my future health and happiness.

I turned up at hospital to be told I had an auto immune disease called Primary Billary Cirrhosis (PBC). It is fair to say from that point on life was never the same again. I was diagnosed at stage 4 of the illness which is at the top of the scale and whilst there was the mention of a liver transplant much, much later in life, I thought it would all be controlled with drugs. The real shock for me was the fact I had liver disease. I always thought that to have a problem with your liver you had to be a drinker when the real facts are that fewer than half of the liver transplants done in the UK are due to alcohol related diseases.

Once I was on medication I felt my symptoms begin to ease up slightly and life began to return to a more normal routine. The one thing I did begin to do was exercise more as I knew that if I kept fit and healthy I would manage this illness better. The exercise was difficult for 2 reasons; the first was the itching as you got hot and sweaty the itching got a lot worse, and secondly the liver is the body’s powerhouse and as this begins to fail the impact is massive. I was now under the care of Dr Babbs in Salford and he really understood the illness and was fantastic at helping me to manage the symptoms as best as we could.

As I was heading into my late twenties and early thirties more than anything I wanted to start a family and despite our best efforts it would not happen for Paul and I - yet another cruel twist that I had not really been expecting. For the next couple of years my symptoms continued to get worse and it was only the support of my family and Doctor Babbs that stopped me going mad. During this time I did complete my first 10K run and my first half marathon taking great inspiration from Jane Tomlinson who exemplified what we can achieve in the face of adversity if we focus on the ‘here and now’.

During April 2009 life was OK. I was enjoying the exercise and still trying for a family although the doctors did not feel it would happen or that it was a good idea. I had also just started to work for a new company and after many years of working for companies that made me unhappy and never fulfilled my potentiality, it was great to be working for the company that was very professional and treated you as a person. I started to thrive as a person and began to earn good money with great benefits.

I went for my usual appointment with Doctor Babbs hoping to discuss why the itching was getting worse and maybe we could try a different drug to help with it. This is when he dropped the bombshell. He was referring me to Leeds Liver unit to be assessed for a transplant. This came as such a shock, I always knew it was a possibility but not for years and years and the suddenness hit me like a meteor. I also felt I was letting my new company down and was worried about my future financial circumstances. Without working I would not be able to pay my bills which were very worrying.

After a 2 day assessment in Leeds (2009) the decision was made to put me on the list. I think I caused some slight confusion when I asked if it was OK for me to complete the Great North Run half Marathon and a 10K runs I had already planned in. I will always remember the surgeon stopping dead to look at me saying “I’ve never been asked that question before from some who is needing a liver transplant, all that I will say to you is that most people with serious liver disease don’t take part in half marathons!” After a few minutes I came to my own conclusion that healthy people who don’t have liver disease also don’t take part in half marathons, so I figured I stood just as good a chance!

So began the long wait as we expected to wait at least 15 months to get the call for a liver transplant. During this time my symptoms got steadily worse, especially the 3 months before my operation. My demise seemed to be coming very quickly and I knew I was weeks away from becoming bed bound. I was very frightened and I now know completely what it means to be “losing the will to live”. I knew I had loads of will power and determination but even I was starting to fall. I continued to run and live as normal a life as possible even though I was heading towards eventual liver failure.

I was registered to complete the 2010 Great Manchester 10K run; my story was picked up by the BBC and the Daily Mirror who both did a feature on me and my running. On Saturday the 15th of May 2010 the day before the run, I went into Manchester in the evening to do an interview for BBC radio as the next day was the Manchester run.

At 9.30 on the evening before the race the phone rang which was a little strange as it was so late, on the other end of the phone was the transplant coordinator telling me I was being put on standby for a liver transplant and to make my way into Leeds. So a couple of hours later with running kit in one hand and a hospital bag in the other I walked into Leeds hospital. I knew since I was on standby there was little chance of me getting the liver (about 5%). In fact it had been earmarked for splitting to allow a young baby to be given the transplant with the other half being sent to another hospital as Leeds only had one surgical team in place so could only do one transplant that day. So that night whilst the Donor family mourned their loss another 3 families sat and waited.

However after a long 8 hours of waiting the surgeon made the call, the liver was not right to be split and it was coming to me. As I came round in ICU I understood why they only do transplants in the most extreme of circumstances. I was in a huge amount of pain and discomfort. It was horrendous, but the one thing I day realise very early on was my PBC had gone. This meant no more itching, death sentence gone, PBC gone, infertility gone, and everything else that had had a major impact on my health. It was very weird a few weeks later when I got home that I didn’t feel exhausted from my liver anymore.

Ten days later I walked out of Leeds knowing that I had a new liver, but also a very, very long recovery ahead of me. Twelve weeks later I went back to work. I know now this was too soon but I was frustrated and felt I needed to do something. I do regret this now but at the time it was the right thing to do.

It was very weird as I left Leeds. The only way I can describe it is maybe when a pregnant woman goes into hospital to have a baby and walks out after having it with an enormous feeling of responsibility for something they now have to look after for the rest of their lives. I felt like that with my new liver - a sudden sense of protection, pride and gratitude for what I had been given and knowing I would always be thankful for what had been given to me. I too will look after it and protect it for the rest of my life.

One year to the day on the 15th of May I took my place on the start line of the 2011 Great Manchester 10K. I might have been a year late and not able to train as I would have wanted but I knew this was an important milestone in my recovery process. I now look forward to life with renewed vigour and hope. Now I am over the worst of my recovery I can focus on my training, work and hopefully one day soon having a family. It been tough, that’s for sure!

I’m really grateful that Clare has shared her experiences with the Dteg website. Please support Clare in her very valuable promotional work by visiting her ‘Just Giving’ page at: [The 'Just Giving' web link]

My advice to others, who have to overcome illness or injury, or just want to improve their lifestyle, is that there is no better route than through sport and/or exercise. It does not have to be at the level at which I train or perform competitively; everyone should find their own level. As I well know taking the first step is the hardest, but if you don’t take that step you will never go anywhere!

Her charity work is designed to:

1. Support the great work done by the Liver unit in Leeds and raising money to allow that work to continue.

2. Support the Infertility Network UK with PBC you are told your fertility is much lower and conceiving a baby would be more difficult. Being the ever the optimist I thought I'd be one of the lucky ones. The year I was placed on the transplant list I actually thought I'd be getting pregnant, so to be told that not only do you need a Liver Transplant and any chances of having a baby would have to wait was a huge body blow. To say I was devastated is an understatement. Not being able to have a baby has been by far the hardest and most emotional part of this story.

3. Raise awareness of Organ Donation 3 people die EVERY DAY whilst waiting for a transplant, yet less than 30% of the UK population are registered as organ donors. We have to change this now so more people get the transplants that will change their lives just like me.

For more information about Clare please go to this web link:[The 'Great Run' web link]

Transplants definitely transform lives