Thursday, 5 March 2015

Life with congenital heart disease.

So this is the second instalment of my life with congenital heart disease series. Last time, I wrote about the story of my past, now I want to tell you about the present. As I was writing this, it got too lengthy for one post, so I split it up in two. This one deals with daily life and scars, and next time I'll talk about medication and general health, exercise and check-ups.

Daily life
My daily life is not much different from anyone else's really. There a a few things that I need to keep in mind though. Because my heart is more susceptible to infections than other people's, I need to avoid infections. This means I ought to disinfect any wounds properly. This was always done with bigger things like when I used to fall and end up with grazed knees as a kid. When I have a papercut on the other hand, I don't bother. I shouldn't get any piercings or tattoos, as they might infect. My ears are pierced though, this is because we were never been told about this before I was 16 or so. I got my ears pierced when I was 12. That's something that should definitely be discussed with patients  and parents earlier! I also need to pay extra attention to dental care. I see my dentist twice a year just like the rest of my family does. But, when I have to to get a procedure done - such as filling cavities - I need to take antibiotics beforehand to ensure I won't catch any infections.

Other than avoiding infections, I shouldn't put too much stress on my heart. This of course means being mindful about exercise, but it also means I can't do every ride in amusement parks. In a lot of attractions it has a sign that says no heart patients should go in there. In some cases it is too strict for me - I can handle a rapid river attraction, really. So I decide for myself what to do and what not to do. I don't go into anything that has inversions or that drops very fast (towers).

My stamina isn't as good as other people's is. This affects how I exercise, but it also made me slower than others when I was cycling to classes for example. When I mention it, they often reply that their stamina is horrible too, but they don't realise that cycling up that hill is much easier for them than it is for me. They only see when they're cycling alongside of me and see that I'm struggling more than they are, or when they're in front of me and I tell then they need to slow down.

I have two large scars and several smaller ones. The smaller scars are from drips, needle pricks and drains. I have them on the back of my hands, on my wrists, in my neck, and near the big scars. There's some scars in both groins from the catheterizations I mentioned in the past pots. And there's also a line of about an inch long in the inside of one of my elbows. This one is a mystery really, I have no clue what it's from.
The oldest big scar runs from across my shoulder blade on my back to the bottom of my breast in the front, on the left hand side of my torso. I've touched upon this scar in the past post: it's been there for as long as I remember and I've never had a problem with it. It has always been a part of my body, just like my nose or my eyes.

For the other large scar, this wasn't always the case. It's the scar from the surgery that I has when I was 14. I remember looking in the mirror the day before and saying goodbye to my smooth chest, knowing it'd never look the same. I think this was a tricky age to get a scar in a place so visible, as you're already going through changes and have a lot of insecurities. My old scar is covered unless I'm in swimwear, but this new one would be visible to everyone in a lot of tops and T-shirts. It has faded now, but more importantly it has become a part of me. Some people don't even notice, others ask about it, and that is just fine.