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Friday, 6 November 2015

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.

Being in my parent’s company gave me an opportunity to pause, catch my breath and recoup without having to explain or give reasons.
This had a couple of curious side-effects. Being in the company of adults and having to listen to their boring chatter changed the way I saw things as a child. I could tell when children (my peers) were lying, exaggerating or trying to make themselves seem more important somehow.
I also found much of what they did or talked about immature.

There was also the flip side. When adults talked down to me I didn’t like it much either. I was used to adults talking to each other and speaking to my parents as an adult even though I clearly wasn’t. When an adult turned their voice into this honey coated high-pitched smiley-faced pretense to talk to me I found it nauseatingly false. This could also have been because when cardiac professionals like doctors and professors talked to me as a child it was in a matter-of-fact tone in a normal voice. I appreciated that sincerity.

My parents always expected me to eat what they ate. Perhaps they wanted me to experience all I could due to my condition. Perhaps that’s simply how they were.  Even if you had a normal child though, wouldn’t you want them to also experience all they could?
I’ve always appreciated that they would always allow me a taste of what they were having if we ate out or came across a food I’d not tried yet.
It would baffle me when my friend’s parents would prepare a different set of food for us kids and I’d find it insulting that they found us not worthy to eat what they were having. My how I hated those kid hotdogs that parents handed out with such glee and my peers accepted with such gusto. I speak of a bun with a wiener sausage and a slap of ketchup on. The hotdog I was privy to at home had a warm wiener sausage in a lightly buttered bun with tomato and onion relish on. I wasn’t intentionally being snobbish, it’s simply that when I was offered a hotdog, that’s what I expected because that’s what I normally got.

Then there was the crockery and cutlery. Grown-ups would insist on giving me cool drink in a plastic glass or cup and food on a plastic plate.
Yes I was a child. Yes I broke my fair share of crockery but so do adults. I found it infinitely insulting when I wasn’t offered proper crockery or glass glasses or ceramic cups. It was something my parents didn’t buy into. We had what we had and used what we used. They didn’t go out and especially buy me my own crockery.

What has this if anything to do with a child who has a heart condition?

Well, in conclusion: A child with a heart condition is going to spend far more time surrounded by adults than a “normal” healthy child. Yes, that child will want to be a child (excuse the pun) with all their heart BUT adult ways will rub off on them. They will expect to be treated as an adult in some ways and not in others. Their social experience will be vastly different to other children. Perhaps they will be polite about it as I believe I was or perhaps not. Try to understand and treat them with love.

Until the next blog, bye for now.

Sunday, 1 November 2015

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.
Being a child, curious and in a new environment I would explore. Dig into things I aught not to dig in and find things I shouldn't.

I was scratching around in my parent's wardrobe and happened upon a large plastic, partially opaque, pharmaceutical pill container. It was the biggest one I'd ever seen. So large my small hand couldn't close around it. It also appeared to be  full of pills. Perhaps it was from being around medical people and places so much but even at that age I had no inclination and knew not to take pills unless instructed to. I did however like their colours and structures and was always curious as to their intent. "What do they do?" was usually my first question when presented with pills.

This pill box was strange though. There was no label. There was always a label. This made me more curious so I peered through the semi-transparent plastic body of the bottle at the pills trying to discern their colour and shape. Realization hit. They weren't pills. I had in my hand a bottle filled to bursting capacity with an assortment of teeth. I wasn't horrified by this at all. Actually I do recall the thought I had and that was "Wow. Where did my parent's get a bottle of teeth and could we get more?"
I also remember the moment when the realization (and that was tinged with a little bit of shock) that I was holding a bottle of my own teeth.

Yes, other children have had their teeth extracted, possibly even a large amount. Enough to fill a very large pill container but it's only later in life that I realized that this bottle of teeth was a symptom of my heart condition.
You see, in those days I was given a lot of that liquid penicillin. A slimy, sweet-bitter false banana flavoured medicine that was kept in the fridge. It was dispensed to me by doctors like a beverage in the hopes that it would keep me free of illness. One of the terrible side effects was that it made my teeth very weak. The other problem was that like any child I loved sweets. Being a child with a heart abnormality led to me being spoilt in this department. Out of sympathy, trying to be nice, I  don't really know, people would give me sweets and I would eat them. Sweets and penicillin are not a good combination for a healthy set of teeth and I had to have most of mine extracted. All at once.
It was during this procedure that it was discovered that I had an allergy to that surgical gas they use to put you under. I remember dreaming of bad scrambled eggs and feeling very, very ill. I also remember waking up and my mouth feeling very odd and uncomfortable. More I don't remember.

So back to the little boy holding a bottle of his own teeth...

Even though I knew they were my teeth and the realization was a bit shocking, I also knew I probably wasn't supposed to find them. I put them back and decided it wasn't my business right now. Perhaps my parents would give them to me when I was older, I thought. Perhaps when I was old enough to understand like they so often told me.
I was worried I'd be too old and not want to play with them. It sounds horrible but trust me, this is how little it bothered me.

Conclusions: Children with a heart condition will obviously go through far more than "normal" children. Things no child should probably go through. I think most of us bounce back.
If your child finds a bottle of his own teeth in your wardrobe, don't freak out. Through your horror, try to smile and find out what they're feeling about the whole thing. Explain and be loving and gentle.

Bye for now, until the next blog.

Saturday, 24 October 2015

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.

You see in those days in South Africa a small city like Port Elizabeth didn't have the fancy equipment or medical experts in Pediatric Cardiology that the doctors thought I'd need. Port Elizabeth was beautiful, small and charming and lacked everything needed to explore this little enigma they'd stumbled upon. From hence forth our annual vacation was a road trip from Port Elizabeth to Cape Town.

Whether it was "strongly recommended" by the doctors or obligatory, I don't know. What I do know is that I'd been sentenced to an annual checkup and so our annual vacation was always taken in Cape Town for two solid and simple reasons. Cape Town was home to what I remember being The Red Cross Children's Hospital which had the best Pediatric Cardiac unit and the best Cardiologist, Dr. Christiaan Barnard. As a child, I didn't realize the magnificence of this man and I'm sorry to say that I don't even remember him. 

There are things I do remember. Painful things.
I have small veins. I believe it's part of this condition. Now try to imagine a small child who has small veins and large needles to draw blood.
One of my worst memories is being repeatedly stabbed by a young nurse trying to draw blood. The nurse calling for help because she couldn't get it right. Then the help calling for help. There were eventually so many medical personnel around my bed that there wasn't room for more. It felt like they were ganging up on me. All stabbing and pricking and prodding. Honestly most of it was more frightening than painful but some of those jabs were no picnic. The jab for my femoral artery, the one at the crease between leg and body right next door to the naughty parts, was no joke.
Perhaps they got their pint of blood, perhaps they simply gave up. I can't remember. I was just glad it was over eventually.

 I can also recall a dim room. There were many silhouetted figures there because the light was always behind them. These people were faceless and featureless because they were surgeons with those caps and masks on. I recall it going very dark and the faceless people there all leaving the room as one without any perceived sign or warning. They stopped what they were doing and left! I remember the shock of realizing I wasn't alone in the dark when one of the surgical team grabbed my hair brutally from behind with heavy rubber gloves. The gloves protruded through a barrier of sorts that separated us above my head where I lay on the operating table.  I remember crying out because my hair was pulled so badly and he (or she) did it so roughly. I remember the sensation of an expanding spherical wall of crackling energy starting in the center of my body and expanding outwards. As it hit my stomach I remember fighting the incredible urge to vomit. As it hit my bowels it felt as if my intestines would empty in a liquid explosion of diarrhea. I remember my sphincter burning and feeling as if I were losing control. Travelling up my body my lungs felt as if the air inside had been super-heated and my lips, like my sphincter, burned and felt uncontrollable. The air I breathed out tasted rank and extra ordinarily hot. As suddenly as this sensation started, so it disappeared as if it evaporated out through my skin.

As a child, these ordeals were horrible. As an adult I understand them far better.
Blood is always taken before surgical procedures to check that the individual is healthy enough to go through with the procedure and that there are no underlying infections or problems.
The procedure was a cardiac catheterization for exploratory purposes. It enabled the doctors and professors the best way to look inside me without cracking my chest open. Unfortunately those many years ago it was important that the patient remain conscious so that the heart performs normally. This was achieved by giving the patient (injected) medication that made them drowsy and incapable of much motion.
The burning sphere I think is a radioactive dye injected through the catheter into the strong flow of the heart's blood so that it gets dispersed quickly and of course gives a clear image of the heart itself. The dye flowing through my veins is what that sensation was all about.
If there's a doctor reading this blog, perhaps you could shed some more factual, better light on the above?

This cardiac catheterization (or one of them) also left physical scars on my arm. The scars never bothered me but evidently bothered other people. We'll get to them in another blog though.

At age five, I was to have a heart transplant by the miracle maker Dr. Christiaan Barnard. On the morning of the operation after reviewing my file with his panel one last time, they decided against it. I believe (and I think I recall one of my later Cardiac professors telling me this) that had they cracked open my chest and done the transplant, I would have died at five years old. As much as they had tried to explore and survey this unknown, beating territory within my chest, their findings were not complete. As medical equipment advanced and more of me was discovered it was realized that they had made the right decision not to do the transplant.
A narrow miss.

I should hate going on vacation with that kind of association with it. Perhaps I do hold that association because I prefer 'home" vacations but I'm not overly averse to having an away holiday.
In fact I don't have an association with these procedures and vacation at all!
I'm not sure if it was intentional on my parent's part or not but they played it well. The second part of the vacation seems to always have been awesome enough to erase any bad association with the nasty part. Weird thing is the happy parts weren't even that extravagant, they were just cool!

Cape Town had a lovely public park with oak trees. These oak trees had very special inhabitants - squirrels! My happiest memories was going to this park and feeding the squirrels.
There was also a memorial on the foot of Table Mountain. A massive monument and at this monument they had buck. Tame buck that would come and eat out of your hand.
There were the trips up Table Mountain by cable car too and the useless yet obligatory tourist trap flannel flag that I'd want every year. I think I had one in practically every colour they ever made.

We'd go and visit my uncle and stay at their home for a few days while we were in the area. There was always crayfish, massive food feasts and plenty of grape juice for me and wine for the adults.

There was also the trips to the Stellenbosch wine farms which I hated as a child because then they were boring but would love to do now.

I remember these happy things from my vacations. Perhaps I don't recall. Perhaps my perception has changed. Perhaps the happy things associate better with vacation because somehow I was happy that the necessary had been done and I knew everything was okay for another year. That the happy stuff was a celebration of this.
Whatever the reason, vacation was always welcome!

Bye for now until the next blog.

Tuesday, 20 October 2015

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 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.