When we think of organ donation, we think of books like ‘My Sister’s Keeper’, pleas from desperate parents of sick children going viral or how it creates great ethical debates. We rarely ever stop to think of the people and the stories behind the issue and how organ donation quite simply does change lives.

I remember Shannan from school as the girl who was always, always smiling, but I also remember that she was really quite ill, something that not many of her peers seemed to fully understand. Her healthissues were a part of her identity that we were all aware of, some of us more sensitively than others, but Shannan always seemed to take it all in her stride. She would still be the bubbliest person in the room no matter how bad the day was and that is a testament to the kind of strong character she is. But strength often comes from enduring things that most of us can’t even imagine facing.

Shannan was born in 1993 and lived a happy, healthy life until the summer of 2005 when her life changed dramatically. Aged 11 Shannan began to have health issues that would result in her having to have a bilateral nephrectomy – the removal of both her kidneys – and at the age of 13 receive a kidney transplant from a deceased donor.

Shannan talks bravely in this interview about something that most of us are lucky enough to quite frankly be fairly ignorant about. The purpose of this interview is not to start an ethical debate on organ donation but to remind us that behind the headlines and court cases are real people. For me the real person was the girl in my year who might be in class one week and off school for the next few weeks, but it could be the man who served you your groceries, your neighbour’s unborn baby, the child sat opposite you on the bus. After all, life is just a deck of cards and you never know how different the hand the person beside you has been dealt.

 

When were you first made aware that you were unwell? 

I was first made aware I was unwell when I started having symptoms like nausea, lethargy, vomiting and weight loss. Initially it seemed gradual over a two week period and the GP kept suggesting it was a sickness bug, but then the symptoms got worse. We went back to the GP who suggested it could be diabetes. It wasn’t until a friend’s mum suggested to my parents that the GP take some blood tests that we got a proper diagnosis. The day after my blood tests I was taken to hospital and it became apparent I was heading towards end stage renal failure and required dialysis.

It sounds like it all happened so quickly and at such a young age as well. How did your illness and the treatment affect things like your teenage years? 

I started getting really unwell in the week after finishing primary school when I should have been preparing to start high school. Unfortunately this meant I had my first day at high school a month or so after all my peers and I couldn’t attend school consistently due to my ill health. I had to miss school for hospital stays, appointments, dialysis and surgeries – things you don’t really think about as a teenager.

Emotionally it was hard for me. At school I felt unsettled and that I didn’t fit in. In regards to friendships, I didn’t really have a solid support system which only led to me feeling more like an outsider. There were unpleasant side effects of my treatment that affected how I looked so there were times at school where I was bullied by my peers. Sometimes my family were so focused on keeping me alive that it seemed like my emotional needs were overlooked. I became very insecure and self-conscious as a teenager.

You had your transplant at the age of thirteen, right in the middle of your school years. What was it like going in for the operation? 

I’d been on the transplant list for a good few months and got the call on a Saturday night whilst watching television with my family. I felt overwhelmed and emotional so I hid upstairs and cried as I packed my hospital bags so my family couldn’t see as I’d always tried to put on a brave face! It all happened really quickly. We headed to hospital straight away, I was prepped for surgery with some dialysis and went in for the surgery a few hours later.

How has your life improved since the transplant? 

Life has improved immensely for me. I feel physically well for the most part and aside from a few precautions, I am free from restrictions. I can travel, exercise and eat what I like without having to worry, something that I couldn’t do before.

With ongoing medical issues and transplants there are physical signs that last long after, even when the person is ‘better’. Do things like scarring ever affect your confidence? 

It used to affect me massively. I would never expose my skin in case you could see the scars and I struggled with my insecurity for years after. I found it hard not to feel ugly and would feel depressed when I thought of how I looked, but over the years I’ve learnt to accept them. If I ever feel upset about their appearance I remind myself how fortunate I am to have them as it meant I’d been lucky enough to be treated.

 

How you look at your scarring is really positive. Have you changed your mental outlook on the rest of your life since the transplant?

I like to remind myself how lucky I am to be alive and able. It wasn’t always easy and I struggled for a long time in my late teens and early twenties but I am finally starting to realise just how short life is and it is important to try and enjoy yourself. I still struggle with anxiety and depression, but as time has gone on I’ve learnt that it is okay not to be happy all the time as long as I’m trying to better myself and keep moving forward. For a long time I felt guilty for not being happy as I felt like someone else could have been saved by the transplant and lived a better life than I have, but I’m learning to be happy in myself and be proud of who I am.

I would also say that my experiences gave me an understanding of the struggles that people can face and in turn I think has made me more sensitive to other people’s issues and needs. Rather than judge people off the bat, I try to think about why people are being the way they are, as it isn’t always obvious what people are dealing with. We can only understand things from our own perspectives but it’s always important to try understand other people and what they are going through too.

Your outlook is something I think you should be really proud of and something that a lot of people could benefit from listening to. What would you say to people who are considering becoming an organ donor? 

It’s hard for me to give an opinion without being biased because it has quite literally changed and saved my life so I can only speak from personal experience, but to me it seems that if you can help someone in any way then it is the right thing to do. By becoming an organ donor and doing things like donating blood, you are helping others and all you have to give is your time! By doing so, it would enable others to have the opportunity to live again, more likely with a new found appreciation of the freedoms that come with good health. On a more personal level, it’s an incredibly kind and generous thing to do.

If you had to say a statement that summed up your outlook on life, what would it be?