Lucia's story

Lucia is sharing her story to highlight the importance of organ donation.

“Before my first transplant, family life was really very normal. Me and my sister went to school, did gymnastics and lots of other sports. Mummy and Daddy both worked, our family was just a normal, well, normalish family that did normal everyday things.

“I was always really into sports, in fact, the May before I first became ill I won triple gold at a local gymnastics competition. I was so proud.

“Apart from battling with nosebleeds, I never had any sort of medical condition or been in hospital before. However, my family began noticing that the whites of my eyes were turning yellow. After the yellowness didn’t fade Mummy took me to the doctors, and we were told it was jaundice. The doctor sent me straight to our local hospital for some blood tests. None of us were prepared for what was to come.

“I was admitted to Coleraine Hospital, the doctor there noticed some small marks on my hand called spider nevus, which are small red marks just under the skin due to the blood being pressured in the veins.

“After a few days of vitamin treatment in Coleraine, I was sent to Belfast Children’s and received more IV treatment and endless tests to see what was wrong. After about a week in Belfast I was given a partial diagnosis of ‘liver disease’, this was when I was sent to Birmingham Children’s Hospital. There I was tested for many things, given loads of different drugs but was still no better. Shortly after, I was diagnosed with Auto Immune Hepatitis Disease and it was slowly becoming apparent that this disease had been present in my body for many, many years, the nose bleeds were early signs that we didn’t realise the severity of.

“I was getting worse by the day and after another week in Birmingham I was placed on the transplant waiting list. I was on the list by Friday night and by mid-day on Saturday I was being prepared for Transplant surgery.”

Lucia’s transplant went ahead but unfortunately one year later, in November 2008, she was put back on the waiting list after treatment for chronic rejection failed.

“Life was different, Mummy wasn’t working anymore as she had to look after me, we spent a lot of time driving to and from hospital appointments. My immune system was compromised so I was very limited as to where I could go, I couldn’t go to school, swimming or go out in large crowds. I was extremely tired and in quite bad pain.

“I stayed at home until I received my next transplant in January 2009. We knew a lot more about the illness and the medical world which made it a bit easier to cope with. The family was very close during this time and we all knew that we had to be prepared.

“The care and consideration that I have received from the whole medical world was amazing. The staff, from surgeons to nurses, from consultant to cleaner, I was very lucky to have both efficient and specialised medical care and supportive and understanding emotional care.”

Lucia says her life has changed for the better since receiving her second transplant.

“In many ways, it’s like I live in a different world now, everything has changed for the better. Simple things from the conversations around the dinner table, to the bedtime routine, from the summer holidays, to the kind of sports I do.

“Despite having to have bloods taken regularly, attending hospitals appointments and taking medicines, I have been given so many fantastic opportunities! From being able to go on holiday to Florida to visit ALL the Disney parks, to giving a speech at an organ donation awareness day.

“The other thing that I appreciate a lot is the transplant games, and all the opportunities it presents. I love the fact that everyone at the games has been through something similar to me. It gives me a sense of belonging and some wonderful friendships have been made there. Another thing about the games is that it gives me an aim to work towards during the year. I have always been a keen swimmer, and when I was finally allowed to swim again after the transplant, the games gave me a fantastic goal. This really helps recovery in transplant patients, as the addition of sport in your life helps to keep your body working really efficiently and keep your strength up. This is really useful for transplant patients as you never know when you could fall ill, and if your body is kept fit, it recovers faster.

“Also, at these events I get the opportunity to spend time and relax with people who go through the same everyday struggles as I do, and it helps me to feel normal.

“To people who are not already on the ODR, I would say: “Please do it!” It is so important to get this message across to people all over the world. It’s even more important to raise awareness of the fact that families always get the final decision.

This is why it is so vital to talk to your family and loved ones about your wishes. Let them know whether you want to donate your organs so that you can give the gift of life to those in need.”