Tag: Congenital heart defect

So, tell me…

Once we moved to Johannesburg, my mother took me to Jo’burg Gen (Johannesburg General Hospital) for the yearly cardiac check-up. It was a whole day affair and I rather enjoyed it because it meant skipping a day of school!

The day always started with a stressful drive in peak-hour traffic through some very busy areas. My mother wasn’t used to this drive so it wasn’t easy for her.

At the hospital we had to check in, take a seat and wait for my name to be called. We always took lots of stuff to do, read and play, anything that could be done while sitting and waiting. Every year I’d agonize about whether or not the procedure had changed and they’d have to take blood. I hated giving blood in general and it never was part of the regular check-up procedure.

Continue reading So, tell me…

Superheroes and Rockstars

Like most children, I loved super heroes but I think my obsession with them bordered on the obsessive. In my teen years this changed and it was rock stars I held in the same light.

It occurred to me only yesterday why I was so obsessed and how this fascination eased over to the rock star genre.

The reason was so obvious! More than anything I wanted to be able to run, jump, play and do all things physical as well as any of my friends. Imagine then, being able to outdo them in these physical feats! That was what super heroes could do. That’s what I wanted to be able to do!

I didn’t much like Spiderman or other animal or specific skill superheroes. I didn’t want to be a spider hybrid. It was more the humans with all-round superior human qualities that I liked.

Continue reading Superheroes and Rockstars

Friends and Expectations

Cardiac Ward Friends.

You’d expect that I made lots of friends in hospital. Friends with similar problems as I had but that didn’t happen. I did not make one single acquaintance in any hospital pediatric cardiac ward that I’d call a friendship. This only occurred to me very recently. I believe even as a child I didn’t see the point. A hospital stay was so brief and people came from so far and wide that it really wasn’t much point in cultivating friendships. I’m well aware that I’m very introverted and don’t make friends easily but I had an aversion to making friends in hospital. There was another problem with hospital friends, especially in the cardiac ward. Even though the hospital stay was short, sometimes their journey didn’t last long. It was horrifyingly close to home. Continue reading Friends and Expectations

The Little Adult.

Your child will learn to cope. I did. I had family (cousins) and friends that could run and play, doing active things for hours. In group games I would often find the least active role and take that. With one-on-one play I often insisted on playing games I knew I could cope with physically. I could keep up for a little bit but when I got tired I sought out the company of my parents. This had a few purposes.

  1. Adults tend to sit around and chat. For them it’s quiet normal to be sedentary. When you’re around the adults, they’ll tell you to keep quiet and sit still. No problem there.
  2. My peers would not bother me with the peer pressure whines of “but come on and play – we’re all playing!” Why? Because the adults were watching and listening.
  3. I could usually sneak a bite of descent food.

Continue reading The Little Adult.

Christmas 2015

This year’s Christmas was possibly one of the best I’ve had in years. There was a twinkle of Christmas spirit, a cozy apartment and my little family. Christmas day was thoroughly enjoyed opening presents and playing with those presents.

Christmas lunch wasn’t an overdone affair. It was simple, luxurious and tasty.

I only hope you all had a wonderful Christmas no matter where you were or who you were with!

I’m enjoying my “invisible” days between Christmas and New Year with my little family still playing with our Christmas presents!

We’ve made it through 2015. Let’s see what 2016 brings!

Ciao for now!

The Teeth in the Wardrobe

There are things a child with a heart condition will live through that seem completely unrelated to their condition. On later inspection they’re part of the intricate paisley pattern of the whole thing.

I was very young. Possibly in the later part of my fifth or early sixth year. We (mom, dad and I) were staying in the cottage behind my grans house. It was a half-way-home as we were moving house. That being said, nothing was in its right place and everything was in its wrong place. Continue reading The Teeth in the Wardrobe

Vacation Decided

Vacations should have been torturous, horrid experiences but I don’t remember them that way at all.

Early on, my existence shrunk my poor parent’s borders of adventure.From having a normal child and the continent as their vacation playground, to having one repeated vacation destination for the next seven years because of me.

Continue reading Vacation Decided

What do I have, exactly?

I was born on Thursday the 2nd December 1971 and today I am 40-something years old on the publication of this blog. When I was born, no-one suspected that anything was wrong. Normally a person with a heart condition is easy to identify. Normally the lips, under the fingernails and toenails as well as tongue are a purple or blue in colour due to lack of oxygen. Unlike “normal” heart condition cases, I was a healthy pink baby.

Months later I caught what most infants catch. A cold and a throat infection. This infection caused my heart to pump harder and louder than usual and for the first time a doctor could hear that there was something wrong. Even though I cannot remember that day, I know my parents can. It was the day everything changed for them.

Of course it was always going to be different for me. Even if the problem wasn’t discovered then, it would have been eventually.

Pediatric Cardiologists were consulted, tests were done and I was diagnosed with the following mouth-full:

Congenital heart condition, pulmonary stenosis (later found to be sub-pulmonary stenosis) and transposition of the big vessels.

What does this mean? Let’s break it down.

Congenital heart condition: Simply means I was born this way. It means it’s not a disease and hasn’t occurred because of external influences such as diet, substances or injury.

Pulmonary Stenosis: This in normal colloquial language means an obstruction or a narrowing in the pulmonary valve of the heart.

Transposition of the Big Vessels: I’m still not absolutely sure about this one but from what I’ve gathered it means that the circuit is working backwards. The blood’s going into the heart where it should be coming out and vice-versa.

A big mystery among the Pediatric Cardiologists is why I wasn’t blue. With all that going on I was supposed to be as blue as a smurf! It was later established that some way, some how, a bypass had grown during my development as a fetus. Something tried to correct itself but didn’t get it quite right. It certainly improved things though because without it I’d have been far less capable and I’m extremely grateful that it happened.

So what does all this mean for me? What can and can’t I do?

The most troublesome symptom or side effect of this condition is that I cannot sustain aerobic exercise for very long. I can do a sprint for about 100 meters and then i need to stop and catch my breath. This happens because my heart cannot keep up with the oxygen demand of my muscles. Zombie apocalypse? Natural disaster? Dinosaur on the loose? Any of those movie scenarios in real life – my life – and I’d have to learn to hide really quickly because there is absolutely, positively no way I can out run anything. Butterflies have passed me on my bicycle.

How I’d love to be able to run for what I feel is continually like Forrest Gump but it’s simply not possible.

So there we have it. What I have and how it affects me physically.

Until the next blog, bye for now.