Cara’s in love with life after transplant
I meet Cara Hearst, a nursing student who has yet to hit her 20s, on a golden brown leafy avenue behind Queen’s University.
Her face is lit by that excitement all the other first years are walking around with. Unlike all other students in her year, however, this Newtownards 19-year-old’s life has been shaped by something much greater than this university experience — in January 2009, Cara had a liver transplant. Only “hours from death”, the thought of going to university couldn’t have been further away for the Regent House School girl’s mind.
Cara entered upper sixth like everyone else in September 2008 with thoughts of exams, hanging out with her friends, and heading out to the 18th birthday party or three.
It was when Cara’s own 18th birthday party came along in December that she became ill. Cara says: “I had started to take time off school and had been to see the doctor and had blood tests. But the test result kept coming back that there was nothing out of the ordinary, or nothing, at least, that I should worry about.
“I went back to school to do an AS exam module in January and I realised something wasn’t right. After preparing all year for these exams, I couldn’t believe that all I wanted to do was sleep during the test.
“A few days later I noticed my eyes going yellow and told my mum. I thought I was seeing things and we both assumed it was down to the light in the room. We had no idea that I was actually going jaundiced. It was inconceivable to us at the time; we thought that just doesn’t happen to people my age!
“Then I noticed my arms going yellow, and after that not much else. My dad had to pick me up and carry me into the car to rush me to the Ulster Hospital.
“I was in the waiting room and I remember a woman who I suppose was also waiting to be seen, turn to look at me and say ‘ooh, isn’t she yellow’. I burst out crying when I heard her, because it meant that there was something seriously wrong with me.”
Cara doesn’t remember much about that night at the Ulster Hospital. Next day she was taken by air ambulance to the intensive care unit (ICU) of King’s College Hospital in London. It runs the largest transplant programme in Europe, undertaking over 200 transplants a year.
“Everywhere I looked people were yellow and really poorly. I could hardly believe I was here myself.
“After a few initial tests I was told I needed a liver transplant and that the next liver that became available was going to me — in a sense I was the person most ill with liver failure in the whole of the UK. This was such a shock to both me and my parents, especially as the doctors still didn’t know what had happened to my liver in the first place. All they knew was that I needed a new one.
“There is a fine line between being ill enough to need a new liver and well enough to endure the operation. That’s why those waiting for a new liver can only wait so long before they are deemed unfit to undergo the operation.”
A liver was thankfully found on time for Cara, but catastrophe struck on the morning of the operation.
The heaviest snowstorm London had endured in two decades hit the city and public transport ground to a standstill. Cara recalls: “We didn’t know if all the staff needed to do my transplant operation were going to be able to make it in. I found out later that my anaesthetist had to walk four miles through the snowstorm to be on time for the operation.
“I will never forget the look on my parents’ faces when I was getting prepared for the operation. I suppose there was a lot I wasn’t told, but I knew enough to know that we had to say our goodbyes to each other.
“But two days later I woke up again, though I don’t remember this. When you wake up they have to pull all the tubes that are keeping you alive out of your windpipe and I hear this can be painful or you can be freaked out by it and pull them out yourself without knowing.
“I was too weak to talk and I was in pain so I was extremely thankful to all the nurses as they still talked to me even though I couldn’t answer them — they were really great.”
Both of Cara’s kidneys failed in the week following the operation and she was put on kidney dialysis. On heavy medication to prevent her body from rejecting her new liver, Cara also contracted pneumonia. “I wasn’t told I had pneumonia but I remember my chest being very sore. I suppose there were so many things wrong with me that it was decided it was for the best I didn’t know and just concentrated on getting better.”
In two weeks Cara was taken off the kidney dialysis machine.
She said: “When I was well enough I was moved out of ICU and into a ward. Some of my school friends came to visit me when I was there which was a lovely surprise. They gave me two scrapbooks filled with photos and well wishes from students and staff from my school. I was really overwhelmed.”
Cara was finally well enough to be transferred to Belfast’s Royal Victoria Hospital where physiotherapy
was a large part of her daily regime. “It was weird having to learn how to walk again. You don’t realise how being off your feet for so long would affect you.”
During this time, the family learnt that Cara’s liver had failed because of a rare genetic disorder called Wilson’s disease, in which the liver fails because you don’t have the gene to break down copper. It came as a shock to the family, all of whom had to undergo tests for the disease too.
Though Cara’s recovery was long and arduous, she often thought of the person who had given her this gift of life — her donor. Cara says: “When I was feeling better and able to sit up at King’s Hospital I was given some things to read, one of which was a leaflet explaining that you could write a letter to the family of the donor as a way to thank them.
“It stuck in my mind and when at last I got home to Newtownards, I decided I should write a letter and it all came spilling out how truly grateful I was. I didn’t know if my donor was male or female, I didn’t know anything.”
Cara sent the letter to the transplant co-ordinator at King’s Hospital as instructed and thought that would be the end of the matter. “You are told that in the majority of cases you never hear again from the donor family for various reasons — sometimes the family want you to move on and live your life, or sometimes it’s just too painful for them to think about as they are still getting over the loss of their loved one.
“So I was really taken aback a few months later when I received a letter from my donor’s mum. I found out for the first time my donor was her 13-year- old boy called Daryl Turley, who had lived in Lanarkshire in Scotland.
“The letter helped me greatly and made me appreciate all the more what had happened to me, and how extremely grateful I was to his mum Lily, who had taken the time to write the letter as well as agreeing his liver could be put up for transplant.”
Daryl died of head injuries after he was struck by a motorbike as he crossed a road. His mother agreed to donate his organs as she felt “it was the right thing to do.”
Cara says: “I don’t know how long it was after this, but the transplant co-ordinator contacted me to tell me BBC Scotland wanted to arrange for Lily and me to meet. It turns out, after all that happened, Lily now does a phenomenal amount of work to encourage other people to sign up to the donor register.”
It was the first time an organ donor family from Scotland and the recipient had met face-to-face.
“We had half an hour together on our own before the BBC came into the room.
“I am so glad I had the opportunity to talk to her and personally thank her and tell her I was grateful for what Daryl did for me. I discovered what Daryl was like and Lily was very happy to see how well I was recovering.
“It was also good for my mum who also spoke to Lily. If it wasn’t for them, she would have been in the same position as Lily — it brought it all home to her too.”
Cara takes a small laminated card from her purse with a photo of Daryl on one side and a tribute from his young friends on the other. She hands it to me and I see one of the biggest smiles I have ever seen on a young boy. Through watery eyes I read what this little boy’s friend had written about him. I melt.
Inspired by people like Lily and Daryl, Cara herself has joined the campaign to raise awareness of the donor register. She says: “Compared to other organs, not as many people agree to donate their liver as other body parts.
“There is a big taboo about your liver. Unfortunately, many people feel they don’t want their organ going to an alcoholic. I feel this is unfair — a lot of diseases can affect your liver and you should never stereotype people who have had liver failure. Secondly, no one chooses to become an alcoholic, it is an illness like any other.”
Cara refuses to drink alcohol, extremely tough for a first year student. But she will not allow a sip past her lips in memory of little Daryl. She says: “I just couldn’t have a drink and it’s not an option. That was his liver and I could not do that to him. I rarely think about it. My boyfriend doesn’t drink either so that helps.”
It transpires this romance blossomed through Cara’s suffering as a school friendship became something deeper. Cara blushes: “He came to see me every other day when I was recovering in the Royal Victoria, and then when I had to stay at home.
He was with someone else when I knew him at school, we were good friends but that was all, we really had no idea this would happen.”
The pair have now set up home near the university, Cara deciding on nursing as a career because of her recent experience.
Amazingly, Cara was fit to take part in the British Transplant Games this summer, collecting a gold medals in a range of disciplines at the event held in Bath.
She says: “One of the main reasons people take part in the Transplant Games is to remember all the donors and the ‘gift of life’. It also helps celebrate the fantastic support network out there.
“The games are going to be staged in Belfast next year, and I am really looking forward to that. A lot of donor families also come along to show their support. It is a good thing for everyone.”
The future for Cara, and all other transplant patients, is an ongoing battle to stay healthy.
Her body can reject her liver at anytime and so she must take daily immunosuppressive medicines which put her at a higher risk of contracting other illnesses.
Unlike Cara, we may not be able to remember the Daryls and Lilys of this world every day. Hopefully we can remember them enough to take the time to sign up to the donor register. For details, visit www.organdonation.nhs.uk or call 0300 123 2323.