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Ben's PSC story

Thank you for visiting my site. I hope you find it both useful and inspiring.

 

On Sunday 29th April 2012, at 19:46, I received 'the call' from the liver transplant team, telling me the time had come.

The next day at approximately 14:30, the transplant began. See 'The Transplant' page for further information.

 

Amount of time I waited on the liver transplant list was 180 days (6 months).

 

As of Tuesday 19th January 2016, the number of visitors to this site was 82,231.

I am now nearly 4 years post-transplant and feeling great.

Everyone has a story to tell…and living it is just as important as telling it.

 

I was diagnosed with Primary Sclerosing Cholangitis (PSC) in 2004 whilst doing a Ph.D at The University of Manchester. At that time, I was told that I may need a liver transplant within the next 5 to 10 years. But, as the Ph.D was so time-consuming, it was so easy for me to hide behind my studies and not face the reality of what life may have in store for me. I refused to talk about my condition (to the utter frustration of loved ones), and adopted the attitude of “I’ll talk about it when there is something to talk about”.

 

But then, it became time to talk.

 

My PSC was slowly progressing. I was experiencing a lot of discomfort in the region of my liver, my urine was very dark yellow and my skin and eyes were yellow also. For years, it was impossible for other people to know anything was wrong with me (unless of course, I told them), as on the outside I looked fine. But what was going on inside my body was a completely different story, highlighting the truth that you should never judge a book by its cover. But, as my PSC progressed and my jaundice worsened, it was easier to see that something wasn’t quite right.

 

So, if other people were going to start to ask me questions about my health, I first needed to be mentally prepared to openly talk about it all. Mental preparation my sound a bit daft, but the increased risk of cancer associated with PSC and the need for a liver transplant was….. to be honest….. very scary. I first started by reading about the disease. This was all very informative, but nothing told me how I would feel and the emotions that I might experience. So I then tried to find other people with PSC. My searches led me to a group on Facebook that was for people affected by PSC and I posted a message on the group page. I then received a personal message from someone in the US called Kirk. He described his experience of living with PSC and it was great to talk to someone just like me. Kirk had a website where he wrote a journal about his life with PSC. I found it so inspiring to read and so decided to follow in his footsteps.

 

On 2nd November 2011, I was put on the liver transplant list and on 30th April 2012, I received a liver transplant. On this website I shall aim to tell you all about PSC, not just the symptoms of the disease but also about how the disease makes you feel and what living with PSC can be like. I will also talk about what it was like to have a liver transplant. I hope that you find it helpful, whether you have just been diagnosed with PSC yourself, whether your partner or a family member has PSC, or even if you just know of someone with PSC.

 

And so here it is…..my story.

Links

Living with Primary Sclerosing cholangitis and Inflammatory Bowel Disease

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Me and Paddy, a few weeks before I received a liver transplant.

Organ_Donation PSC Support PSC forum British Liver Trust Kirk's journal VLARGE_PSC_logo_colour_all Paul's blog