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I was diagnosed with chronic liver disease just before my 17th birthday. I'd struggled through my GCSE's, loosing so much weight I looked drawn and frail. Throwing up after every meal unintentionally, I learnt to not eat before an exam in case I was sick during it. Eventually, I went to the doctors and they referred me to the hospital to have an MRI. This was to ensure that the lining of my stomach wasn't damaged from being sick so much, however we did not expect the results of that MRI to be as life changing as they were. Sitting in the consultant’s room, anxiety stiffening my body to the point I began to shake. "You have chronic liver disease which is very rare to find in people of your age." This moment when I had been told I had PSC my changed my life forever. I was stable for the first 18 months after diagnosis however this all changed in December 2016.
I collapsed on the street and was rushed to hospital where they did various examinations and found there was a large stricture in one of my main bile ducts. This, little did I know, was the beginning of my liver failure. Being discharged from hospital on Christmas eve, I spent the next few weeks resting and taking it very easy and enjoying the Christmas spirit. The end of January I was doing my makeup one day when I noticed in the corner of my eyes they were yellow. Leaving it a few days thinking nothing of it, a close friend told me to go to the doctors, which I did. When I entered the doctors room he immediately knew something was not correct, he picked up his phone and called Poole Hospital, I was admitted to hospital and this was the beginning of my nearly 7 month stay in hospital.
I spent 2 weeks in Poole hospital, where I started to lose weight as I just couldn’t eat anything, struggling to eat even one small meal a day. They began me on high calorie drinks which I hated, having to have various types of anti-sickness pumped into me to stop me vomiting these drinks up. I had a bone marrow aspiration as they first believed I has lymphoma, (a type of bone cancer) which luckily, I didn’t. Only having local anaesthetic to numb the skin, the Bone marrow aspiration, hands down was the most painful procedure I have ever had. The doctors at Poole hospital admitted that they just were not specialised enough to treat me and I would have to be transported to the Royal Free hospital in London. Many of my friends would come and visit me in Poole as it was close to them, but I knew that this would change as soon as went to London. I was transported to London via ambulance which most of the way had the blue lights flashing to get me there as quick as possible as I couldn’t go for long periods of times without pain relief. As I arrived I quickly realised that the hospital was a lot bigger than the tiny hospital I had spent the last two weeks in. I was taken up to ward 9 North where I would spend the next 7 weeks. The morning after I arrived, when I was awake, I had a Nasogastric tube put up my nose, down the back of my throat and into my stomach so that I could calories, to stop me loosing even more weight. I didn’t agree with the first tube I had and asked for it to be removed after a couple of days. I tried my absolute hardest to eat, but I just couldn’t do, so inevitably they had to put another tube into my stomach. This one didn’t get taken out by choice though, this nearly killed me. Early hours of the morning, I felt incredibly sick and I began to vomit. I threw up half my tube which looped in my mouth and began to chock me. Unable to reach my call bell the bed bound patient next to me managed to get out of bed and assist me. I thought that was the end, I couldn’t breathe and I couldn’t get hold of the nurse. The next morning the doctors sent me down for many test as they couldn’t understand why I was in so much pain. I was pumped full of morphine and cyclizine. I had 2 ERCP’s (Endoscopic Retrograde Cholangiopancreatography) which both did not work. They did these to try and open the bile ducts that had strictures, the main one from the one found in December. I was devastated when they told me they didn’t work. Even more so when I was told I would need a liver transplant. At 18 years old, I wanted to be normal, I wanted to travel the world, drink alcohol, party until early hours of the morning. I was a shell of my former self, loosing just over 12.8kg in 3 weeks, I was skinny, my hair began to fall out due to stress, I couldn’t even walk to the toilet without getting out of breath. My haemoglobin levels had dramatically fallen, which meant I would get out of breath so easily, my mum would have to help me do everything, from walking to the bathroom, to having a shower. I hated my life, I hit a real low, yet I stayed positive and still cracked jokes. My work sent me presents which cheered me up incredibly, the little things matter. I was put into an isolation room, where whenever anyone entered my room they had to completely scrub down. I felt like I was an alien with a foreign disease. I have never felt so pushed out and strange. My own mother couldn’t hug or kiss me in case she passed on an infection. I hated every minute of it.
Having a feeding tube at 18 was very hard, it knocked my confidence majorly, I hated leaving the hospital walls, I was so concerned by people staring at me, I hated being labelled the “sick girl” no I was Sophie. When my family came and visited me, it broke my heart that it would cause them to cry when they saw me because I looked so ill, the tube, the weight loss and the yellow skin was so different to the usual Sophie that it shocked them. I was discharged from London after a 7 week stay, I was so pleased to be going home. However, I was only home for 8 days before I was rushed back in.
When I left London, they took the feeding tube out, because I could eat enough to stay off it. Little did we know that I wasn’t absorbing the nutrients needed to stay alive. One day I was in my friend’s car, I asked her to pull over as I felt like I needed to vomit, I opened the car do and dropped unconscious, where I remained unconscious for a further 8 minutes, luckily, I was with a trauma nurse which is a close friend of mine who immediately called 999. Soon after an ambulance turned up and I was blue lighted to Poole hospital. I stayed in Poole hospital for another 4 weeks. As soon as I arrived I was straight down to endoscopy to have a NJ tube put back down, however this one went further down into my lower intestine to bypass my stomach as to stop me feeling sick. During this stay in hospital I had a pick line inserted as I was rejecting cannulas every day and they were finding it harder and harder to administer IV medication. I could go home with my feeding tube, I learnt to flush it, aspirate it and set up my fee. I was mobile with “bertie”. Did I care what people would thing? Nope.
As hospital stays come, I spent a long time in hospital and I cannot fault the nursing staff and doctors that treated me, being on the younger side of the adult ward they always assured that I had a private room and they always made sure I was okay and I wasn’t feeling lonely. But no one like spending time in hospital, I just wanted my home comforts, my own bed, my old life back, but that wasn’t to happen for a very long time.
My Brother, Daniel, who is 21 years old and is in the Royal Marines offered to donate half his liver as the liver is the only organ to regenerate, so he did all the work up and tests to do it. And he was a match! But on the early hours of May 9th, 2017 at 02:00 am I was awoken to my phone ringing. It was time, they had found me a suitable liver and it was mine. So, my boyfriend at the time, drove me and my mum up to London and I checked myself into hospital. My stepdad stayed at home and organised care for my cat and accommodation for himself and my mum. I was led in the hospital bed, so nervous I couldn’t access my brain, people coming in and out taking blood samples, urine samples, giving us updates. When the time came I kissed my mum and my brother good bye and went down to surgery. I walked through the doors sat myself down and said a little prayer. When I woke up, I have never been in so much pain, I struggled to breath, and I had numerous tubes and pipes coming out of me I felt like an octopus. I stood up 2 hours after being in surgery for 14 hours, I felt so proud of myself. I spent a further 3 days in Intensive care and then I went up to the ward. I continued to progress and left the hospital 13 days after I had the Liver transplant.
When my PSC comes back, I hope then we are closer to finding a cure with the help of events like this raising money and awareness.

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