Miss Marvelous: The story of the super strong Sarah Barker

“I went from strength to strength playing in many sports teams at school and travelling to many places across the world”

Hello, my name is Sarah, and this is my Transplant Story…

It was September 2014, I was 32 and I had just given birth a month before – a baby boy. He was my second son, and this completed my little family. Only a few weeks later, I found myself back in hospital. This wasn’t uncommon as I’d spent a lot of time in and out of hospital during the pregnancy with an infection. It hadn’t been made clear what the infection was or why it kept coming back but, after some antibiotics, it would go away again for a couple of weeks before returning again, and then again.

This particular night I was about to say goodbye to my mum and husband who had been visiting me in the hospital when the doctor walked in. In conversation, he said, “We’ll have to start thinking more seriously now about the transplant”.

“Transplant?” I replied. “What transplant?!”. And, that’s how I found out that I needed a new liver.

I was born with Biliary Atresia. I was lucky enough to have had Kasai surgery before I was 4 weeks old (the cut-off point for the Kasai procedure to be successful). I went from strength to strength playing in many sports teams at school and travelling to many places across the world for my job without concern. I developed Oesophageal varices in my teenage years but largely, I assumed the Kasai surgery had solved the issue I’d had at birth. Never had I thought that I’d need a liver transplant!

It transpired that the infection problem was “cholangitis” – a reoccurring liver infection. Apparently sometimes this goes away naturally but it was clear that for me, my liver was too damaged now and the infection was only ever going to keep coming back. The only solution was a liver transplant. With a newborn baby in my arms and a 2-year old at home, I felt my world had just collapsed. How was I going to cope?!

I was deemed poorly enough (via my UKELD score) to be finally put on the transplant waiting list in July 2015. I spent most of 2015 in and out of Addenbrooke’s. Without family living nearby, and a husband who worked long hours in London, this proved tricky. Looking back, it was a really hard time but I was determined that I would maintain a positive attitude for my boys and hold on to the hope that one day, I’d get my gift of a new liver and see them grow up. 2016 passed by with more hospital admissions and towards the end of 2016, I started suffering with encephalopathy. The first sign of this had been when I drove to Tesco one day, walked into the shop and stopped in the shop doorway questioning where I was and why I was there. It was a frightening feeling of confusion. I was able to remind myself that it was the supermarket, but I couldn’t remember why I had gone there. I felt very confused and just walked straight back to the car and drove home. I knew things were getting worse at that stage.

Sarah managed to stay strong and positive for her family

Then, late one Saturday night in early 2017, my phone call came. They had found a matching liver for me. The feeling when receiving that call is hard to describe. It was overwhelming to know that my life was about to be saved but equally it was overwhelmingly sad to know that someone had passed away in order for me to continue my life.

I arrived at the hospital at 2am and had my transplant about 10am. I spent 2 weeks in hospital after my transplant. Initially, my body rejected the liver. I was 34 and relatively fit and healthy which the doctors said was the likely causes of rejection. It was all sorted with some steroids and once my body started to respond to the medications, my recovery was smooth.

It’s impossible to explain feelings of being grateful for a transplant. It is wonderful. I wrote to my donor family and thanked them for their decision. It took many months and many drafts to write that letter but eventually, I realised that what mattered the most was making the effort to say “Thank you” at all. I would always encourage other recipients to do the same.