November 27, 2006

22 Today! 20 years later – a life with a heart condition

Today I am 22 and I have written this as an account of my experiences with a heart condition, I am not a literary scholar so please forgive the English. I have found this quite difficult to publish as it is quite odd for me to read but I wanted to give hope to those who need it:

My name is Nick, today I am 22, 20 years more than I was expected to live. I consider myself normal, although many others wouldn’t. I was born with a unique heart condition, not problem – its only that if you let it be, with holes in the heart. I was given little chance of survival as at the time, technology available to hospitals was limited; the advancements in this field have been incredible. Patients before the 1980’s with complex heart conditions are few and far between and the idea of having an adult cardiac ward for patients with lifelong conditions was inconceivable. This made me feel that I should make the most of life, as I was fortunate. I had major surgery when I was 2, 11 and 17 at Guys (the hospital of my cardiac consultants) where I came through extensive open heart operations.

As a child on the paediatric ward things were often bleak, kids would go down for operations and never come back. When I went down for my first operation two of us went down for the same that day, I was the only one who came back. Things have definitely moved on since then, but there still have been dark times. When I was at college I went home one day feeling ill. The next day I got up walked into the bathroom and threw-up blood everywhere. My parents rushed me o hospital where I was admitted immediately. No one knew what was wrong with me or what to do, and I again miraculously survived another twenty odd hours of surgery. I spent a month in hospital.

Sometimes I have felt that my life would be irreplaceably influenced by something, such as having a pacemaker installed or having to take tablets from henceforth, I was fortunate enough to avoid taking any tablets until this event, which was often to the doctors incredulity.

People are always telling me how lucky I am, but few realise the things that I have been through and I cannot convey many of the things that I have endured. I have experienced pain, such as having iodine poured on an open wound all the way down your chest, or having large needles, attached with tape, removed from your neck, I have experienced odd sensations such as having my heart beat backwards or being fed through a tube in my nose. I have also seen many acts of kindness from hospital workers, not just the nurses. You learn to be kind and friendly to everyone from the cleaners and porters, through to the doctors and senior surgeons, all of them play an important role. When in hospital you want to feel as comfortable as possible and its amazing how a little bit of friendliness can make your life and theirs easier. Few people talk to the cleaners and less important staff, but in response, I often got second portions from the kitchen staff or an extra fan from the cleaner, hospitals are always excessively hot!

My ethos is to cooperate and be as compliant with staff as possible, it gives you the best chance of getting through everything, although I have also learnt to discuss and question. Most people think doctors are always correct, and most of the time they are, however once I managed to catch a bacterial bug which began to destroy the heart and surrounding tissue, but my G.P. detected nothing. I was also told that if I did survive I would be very small, I am five foot ten. You have to be positive when you go for an operation, and I believe this is one of the reason I have survived so long, a patient in his late thirties who was on a ward next to me went down for a minor operation on his heart, having never known anything about it before and was absolutely terrified, when he came back up he started shaking and his heart stopped and almost died, it really makes you think.
I always feel that I should give everything my all, when I was in hospital once I saw a bench with the motto ‘never give up hope’ on it, and I adopted it as my own outlook on life, because I have in many ways been fortunate and able to lead, what I think, is a fairly normal life. I never tell people about my heart when I first meet them unless I need to, I don’t want to be judged prematurely, I will let people find out for themselves the person that I am. There are still people and acquaintances that are unaware of my condition, many people pick up on my ‘blueness’ and the colour of my lips due to the lack of circulation, but don’t know the whole story, which makes me proud of what I have managed and how well I have fitted in.

Sometimes people stare at me or ask me why I have ‘blue lips’ or call me ‘gay’ or a ‘fag’, which I usually try and explain, after all usually people are just curious not vindictive, although it annoys my mother if she sees someone doing so, in the street. In turn I try not to stare at others with misfortunes. A couple of times, people passing have taunted me about wearing ‘lipstick’, I simply ignore these people but also pity them for have been brought up to behave like that.

Football was my favourite pastime in my youth and I used to play it as much as possible, at lunch time in the school playground and with the local team outside of school. I found it terribly frustrating that I got breathless and therefore could not run around as I would have liked to have done, but I just get on with it and was determined to continue playing. I spent a lot of time as a goalkeeper, where mobility was not such an issue and became very good, but after having open heart surgery, I was reluctant to get my body behind the ball, it was only natural I guess, and my talent consequently diminished. All the people that used to regularly play with were on the whole supportive and happy for me to play with them, as many of them were friends of mine at the time. It was lucky for me that I fitted in well and that people generally accepted me as it helped me to blend in and feel apart of things, and most of the time at school I could just get on with everything just the same as everyone else. Of course there were some exceptions, such as for P. E. and school trips where I was not up too all the tasks, some people thought I was making a big deal of nothing to get allowances made, and that my parents were over protective about my condition, but I didn’t really care, as I knew that they obviously had no idea of what I had been through, and it was also conformation that I managed normally most of the time, as they couldn’t see anything wrong with me. Having said this I would have gladly given up all the special exceptions I was given, not to require them.

Nowadays I cant play football which is a shame, as although I am certainly fitter than I was then, unless your any good there is nowhere for one to play, apart from the occasional kick-around with friends. People are far too competitive and to be part of a team you need to reasonably good, you don’t get the same cross section of people that you would in the playground, where you played for something to do and winning wasn’t so important. I certainly was very sensible for my age, I had to be, I needed to look at myself and be careful with what I did. Having said this I knew my limits and had a tremendous drive and desire to prove that I could complete tasks that others thought beyond me, such as the Duke of Edinburgh Award, another extra curricular activity I got into at school. My determination to do as much as others, including the hikes, a part of the program, helped me to complete both the Bronze and Silver Awards.
I have tremendous support from my parents, friends and family, which are highly relevant to my health. Before a procedure, I never want to tell my friends and relatives, as I don’t want to panic them, I think they are often as worried, if not more than myself, I have faith in the powers that be, I have to, to have got through all this. The hardest part is seeing the anxiety in my parents before a procedure or having to sign a consent form with death on the list of possible complications and risks.
I am different, and I have no problem with this, infact it gives me individuality, thus many people know of me as I am distinguishable. However unfortunately this can lead to discrimination as well. I have been barred from pubs, for no reason such as appearing drunk despite it only being eight o’clock and me being completely sober, also at events I often get searched by security, whilst the other people with me do not. Perhaps people sense it rather than discriminate and I wonder whether my difference has led to me never having had a girlfriend. Maybe some of these factors are true, perhaps it is my mannerisms that are the cause. I always try and remain positive, there is no point in being negative about things, it wont get you anywhere, and positivity usually leads to better results. Sometimes I do get disenchanted about my condition but then I remember how lucky I am to have the support that I enjoy of family and friends and it makes me realise that there are a lot of people far worse off in the world, than myself. A lot of people don’t seem to have the same outlook, people are often too selfish or self centered, they don’t think about others. My goal is to be a merit to society and help the ‘world’ as a whole. I see the bigger picture. This may be because of my upbringing or down to the fact that I had to be mature and look after my own health from a young age.
My curiosity and fascination in chemistry was first sparked by the medicines administered in hospital and their effects fuelled my interest in the basics of chemistry. In the future I hope to either contribute to the well being of society by using my degree for pharmacy or drug development or working in the environmental sector to help look after the planet. I am currently undertaking a master’s degree in chemistry at the University of Warwick

The reason that I wrote this article was to give hope to others with serious ailments and show that anyone can overcome their problems and still achieve much. It also gives insight which few people have and by sharing my experiences it will hopefully allow people to see things from a different angle. I only really contemplate what I have been through and achieved just before or after I go into hospital for an operation, you make promises to yourself to do things that you would regret if you never got the chance, but then its so easy afterwards to just drift along. Most of the time I just get on with things, which essentially is what this is all about, I live a normal life most of the time, and that for me is an achievement, far greater than money or success.

I would also like to voice my appreciation to all those, including Dr Eric Rosenthal, Prof Tynan, Shak, Joydeep, Aphrodite and many others, that have contributed to my wellbeing.

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