Anthony talks about his experience of Endocarditis

Anthony was born with a Coarctation of the Aorta, and had surgery at 7 months old to stabilise his condition. He was then put on beta blockers to lower his blood pressure so that his heart could heal after surgery. He went on to lead a relatively normal life, with only daily medication and check-ups at St Thomas’ hospital.

Studying at Canterbury College Anthony realised his passion for cooking and gained a level 3 NVQ in professional cooking and hospitality. He then went out to France to learn to prepare and cook French delicacies. After this training he went on to work at events in Wembley stadium. However, after three years of dealing with worrying low energy levels he decided he had to leave his job and take a break as he felt he had pushed himself too far.

He turned his mind to other pursuits but felt his energy levels lowering further. He told us; ‘It felt like my body was shutting down.’  He was forced to take sick leave and focus on his health as he felt more symptoms developing; night sweats, palpitations, shortness of breath and loss of appetite. His GP and doctors at the local hospital couldn’t work out what was wrong and six months later Anthony contacted the team at St Thomas’ who immediately recognised the symptoms of Endocarditus. He had surgery immediately after scans showed the infection has caused damage to his aorta and tricuspid valve and his condition was stabilised with a course of Benzyl penicillin and Gentamicin (forms of antibiotics) through an IV drip.

In total Anthony had to spend two months in St Thomas’. As he started to feel better the doctors began investigating the initial cause of the infection. He believes it entered his system after a tooth removal eight months previously.

Anthony is now fully recovered but told us ‘it was honestly the scariest thing I’ve ever been through.’ He is now working as a volunteer at The Somerville Foundation and the Children’s Heart Federation as he wants to help provide information and support for young people with congenital heart disease.

As Anthony has proven, if you feel something is wrong or you aren’t getting the correct help or information from your local health services it is important to contact your specialist team to tell them your concerns. They will be able to give you a more accurate idea of what is happening to your body.

If you have any concerns about Endocarditis, or would like more information please contact us at LHM on 01214558982 or info@lhm.org.uk

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Nadine McGaffin - My Heart Journey

When asked would I share my story with you all, I struggled to think how I would put this journey into words but I hope that the words I write will be words of encouragement to you all.

On the 9^th September 1988, I was born in Belfast, to all I seemed the healthy, perfect baby girl and that was the case until 5 days later when concerns were raised by my mum about my lack of energy and my inability to cry. That evening I was transferred to the maternity unit attached to the Royal Victoria Hospital for Sick Children in Belfast. The following morning I was taken by the cardiologist on call to the children’s cardiac ward where they performed an echo and discovered that I suffered from a complex congenital heart condition known as hypo plastic right heart with transposition of the great vessels. Within hours of this discovery I received an emergency balloon septostomy, which was followed by open heart surgery the following morning. Six weeks later I left the hospital and remained at home with regular check up’s over the next few years.

Weeks after my 4^th birthday I went for a routine check-up, only this check-up would show that the hole between my two ventricles was beginning to close over so I was booked in the following week for a cardiac catheterization ahead of my fontan surgery that would now be brought forward due to me being in urgent need of it. In October 1992 I underwent my fontan procedure, an experience that I don’t remember in great detail as I was so young, but I do have a few memories like my endless glasses of Ribena at night from the nurses when I couldn’t sleep and becoming so used to the ward that I cried when the doctor said I could go home! I guess in many ways Clark clinic ward became like a home away from home at the time and in the years that followed.

After receiving my operation, I recovered well and was a very fortunate child in that I only really ever attended hospital for review appointments and medication monitoring.  I grew up and still live in a small town in Northern Ireland called Moira, where I attended the local primary school. It was such a small school at the time it just felt like family. While at primary school I took on as many of the activities as I could alongside the other children in my class. The only difference that I had from other children was that when going out to play I had my hat, scarf and gloves on to keep me extra warm and if it was too cold and my lips were blue, the teacher would make me stay inside. I always took part in sports day at school and was able to join clubs such as choir.

I guess when I began High School, life began to change slightly and the differences between myself and others in the class were more noticeable. I struggled with the weight of my school bag, so I was the only person in my first year of High School to have a locker. All my friends thought it was great, I didn’t!!! To me I suddenly felt different and I struggled with that. I also found that my ability to take part in PE was beginning to decrease in not being allowed to take part in hockey and other contact sports and eventually it reached the stage that I didn’t take part in PE at all and instead went to the library. On games day the teachers granted me an early pass and I left school at lunchtime that day. In the first few years I didn’t enjoy this noticeable difference from others in the year but as I got older I found that a half day in the week was a treat that no one else in the class would get and so I embraced it.

While at secondary school I had a number of inpatient stays in hospitals that meant that I missed some school but I always tried to get back to school as soon as possible. One example of this was when I had my teeth taken out and because of my condition I had to have this done in the hospital. Despite the fact I’d had the roof of my mouth cut open and my cheek bone broken to get the teeth out I still went to school the next day. I loved my school days and I was blessed to have such a family-like school and teachers who would have gone out of their way to ensure that I was cared for and anything I needed they would have provided for me. This support and encouragement allowed me, despite my complex condition, to go on to achieve 9 GCSEs, 4 As Levels and 3 A levels. School were fantastic in aiding me through my exams with the support I needed in relation to my heart. From extra time in my exams if necessary to a seat at the back of the room so I could slip out to the toilet whenever I needed to… diuretics in the morning made exams a nightmare at times!!!

Alongside school I was able to join after school clubs like choir, band and Christian Union and outside school I even found the energy to join the local Brownies and then Guides, where I was best Brownie 3 years in a row for the best attendance. Through Brownies I also had the chance to go on pack holidays with the girls and much more…The only thing I had to remember that the other girls didn’t was I had to take my tablets!! Not always an easy task when you’re having fun!!!

Throughout my teenage years I did the same amount of activity as my friends and although at times I tired easier I did my very best to keep up.  I believe that it is important your friends know about your condition. My friends always did and were brilliant at looking out for me and helping me if I ever needed it.

When I was 18 years of age, I became a volunteer at the local Church youth centre that I attended in my early teens and this sparked my love for youth work, a passion that I have continued on to this day. Through my role as a youth worker I have been on outdoor adventure weeks, zip lined over lakes, completed high rope courses, caved and much more in the world of outdoors. It allowed me to experience things that normally I would have worried about doing because of my heart condition. My love of youth work has opened doors for me to become a guide leader, setup up programmes for girls, run summer schemes and even taken me to London in pursuit of my dream to become a fully qualified youth worker!! 

As a child you know you have something wrong with your heart, as a young adult you come to fully understand what that something is. I am approaching my 25^th birthday in September and I think the last 5 years have been the hardest for me in terms of my condition and the challenges I have faced but what I have achieved has also been incredible.

At 20 years of age I went off to the big world of University, I went to Queens University Belfast…not wanting to venture too far from home. I embraced student life for all it was worth while holding down 2 part time jobs at home at the weekend as a youth worker and shop assistant. Trying to hold all this together very quickly brought me difficulties and 2 weeks after my 21^st birthday I ended up in hospital, not able to breath properly, exhausted, sore and with chest pains. I had never experienced any problems with my heart since my surgery at 4 and now all of a sudden here I was in hospital and very sick. In the 2 weeks that I was there I underwent many different tests, a catheter and a MRI. I had developed an infection that had never cleared. It had become a virus and had multiplied my cardiac symptoms. With a few months of rest and learning to pace my life better I would be back on my feet again. While in hospital that time I made a new friend. He too was a young adult with half a heart and it was amazing. For the first time ever I had met someone who totally understood what I was going through and how I felt. We laughed together, moaned together and gave each other invaluable support and advice. Having never taken warfarin before this transition was difficult for me and he was able to help me and give me great advice when my blood failed to be in range! Even after that hospital stay we remained great friends. After leaving hospital I was forced to cut my university hours to part time to enable me to fully recover. It was great in the months that followed but a year later when I was back on my feet it was frustrating. Rather than moan about it I saw it as an opportunity to try new things and so I became a volunteer classroom assistant one day a week and then began to volunteer with Children’s Heartbeat Trust, the charity in Northern Ireland that works with children with heart conditions. Also that year I began training in the gym and completed my first 9 mile marathon walk in Belfast. The following year I decided to embark on a new adventure and I went to London to begin a youth work degree, I studied in central London 2 days a week and worked as a youth worker the remainder of the week in Surbiton, Co.Surrey. I loved my London life and the fast paced life that I had acquired but very quickly learnt that my heart didn’t and 8 months later I returned home to Northern Ireland. This time I needed new medication and a lot of rest to make my heart better and so I rested up and took life easy. This experience showed me that although I think I am like everyone else, at times I’m not but that’s ok, because although I came home early the achievement of doing it at all was amazing. Since coming home I have had a number of inpatient stays, 3 in total to get my medication sorted and I am happy to say we have finally got it sorted! Each visit I embrace and count as a few days off from life! Every experience makes you that little bit stronger. Although I have had a number of inpatient visits in the last year, it has also been a year of great achievements. My recent catheter showed no change in my heart since my fontan 20 years ago, I returned to my studies at Queens University Belfast and graduated last month with a BA Hons in English and Theology, I completed my second 9 mile marathon walk, was heavily involved in the campaign to retain heart surgery for children in Northern Ireland, through sharing my journey in Parliament buildings, undertook the role of leader in charge in my Guide troop, became an employed youth worker in the evenings and just last week I got my first ever full time office job.

Also as this goes to print I will have undertaken my first ever half marathon walk as well!!!

I really want to leave you with some words of encouragement, I may have half a functioning heart but I do not have half a life. I never let my condition discourage me from attempting my dreams, sometimes it doesn’t work out but I give it a go.  If I could give two pieces of advice they would be ask questions…no matter how stupid you think it sounds ask it. I ask the stupidest questions at times but the doctor and nurse will always listen and answer the question and through those questions I understand so much better my condition and the life I can have with it. Secondly if you ever get the opportunity to meet others with half a heart, do it. A friendship like that is invaluable and so special, we all have our own individual journey but we can support and encourage each other in that journey.

Nadine McGaffin

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