Friday, 20 February 2015

Life with congenital heart disease.

I've been in doubt for a long time about whether to write about this or not, but as I write posts on exercise regularly, it seems relevant to tell you about my heart disease and how it affects me. I'm not even sure where to start, but things I want to cover in this and following posts include a bit of my story, how it affects me in daily life, and how it affects how I exercise. So I decided to try and split it up into past, present, and future. Some things never change though, so it's not easy to completely split it up. Anyhow, here's the story of my past.

Congenital means that I was born with my heart defect. My aorta was narrowed and I had surgery to fix it when I was a mere 14 days old. During my early childhood I also had numerous cardiac catheterizations in which doctors go up from the large vessels in the groin to the heart or aorta with a small "balloon" in order to stretch the narrowing. I don't know how many times that happened, but it must have been many times since there's so much scar tissue on one side that they had to go through the other side. I cannot remember a single thing from all of this as it happened when I was very, very young.

Later in childhood I felt rather normal, but in hindsight I may have gotten ill more easily than other kids. I did have a huge scar - not the one in the photo - and had to go for check-ups once a year, both of which are still the case of course. The scar never bothered me, after all it had been there as long as I could remember and it has always been a part of me! The check-ups on the other hand, I dreaded. What I did know already back then, was that I should never push myself too far physically. Listening to my body is key! That's why I'm not allowed - by my doctors - to participate in sports competitions and PE teachers were told to judge me on efforts rather than performance. I always ended up last when it came to running and hated it, but I generally liked PE. and even did a bit of sport after school once a week.

Until my teens, nothing much changed. But at some point I noticed I got out of breath faster than usually, which I told my doctors about in my check-up. The year after this one, they told me one of my heart valves was not functioning properly and I had to have surgery to replace it. This was a major surgery, the kind where they open up your chest, put your hart to stop and connect your body to a heart-lung machine so the surgeons can work on the heart. These were terrifying times and the wait until the surgery (I think this was about two months) seemed like forever. Sleep quality is not great when you're faced with this kind of news and it was difficult to stay focused in school of course. But my family, friends, classmates and teachers were all very supportive. The surgery went very well and I recovered faster than even the doctors had anticipated. I haven't had any problems in the past ten years, but I know that I will need more (minor) surgery in the future. (More on that in the future post.

I realise that I'm lucky to be born in the time and place that I was, where the medical knowledge and equipment are available and affordable. So I ought to make the most out of the life I was given and take care of my health as well as I can.

In the next post, I intend to write about the present, so topics will include daily life, exercise, scars, and how people deal with me and I with them.