I’d like to think I’m a practical person and take things in my stride, always trying to remain positive, and Brugada Syndrome should be no different right? But I’ve been thrown by how I’ve felt at times! I’m not one to just cry… (I normally only cry at TV programme’s).
In hospital I cried most mornings, but even then I came to see that it’s not all bad. As a family we haven’t suffered much in the way of tragedy. We didn’t really have anything to moan about. Unlike the ladies in the ward with me. This one lady was not only in with her own heart condition, but had lost her husband a month before, her one son had died and the other son was suffering from face cancer… I mean seriously… it does make you stop and think. Really what was I crying about? I was still alive.
But still you can’t stop your thoughts can you? I had nights just lying in bed awake worried to sleep, thinking and thinking… once the device was fitting I lay there wondering. I wonder how painful it’s going to be if it happens again? What will the defibrillator feel like? Almost just waiting… suddenly you become so aware of your heart beat. One night in hospital I had a moment when it was racing. First of all, I just thought I was imagining it, but then I told the nurse and he checked the monitor I was wired up to. Yes, it had had a moment of 145bpm. Scary, but I felt reassured that I wasn’t making it up!
I worry that this condition is hereditary for my family and for my children and although we will be having genetic tests done, and if needed procedures will be put in place, you can’t stop the worry you feel as a parent.
I’ve felt so upset watching the kids playing, knowing that that night could have very nearly been the end. The end of me getting to be a part of it all and that feeling that I could have been robbed of mine and their futures. I know it hasn’t happened, but I was lucky, so so lucky.
Another blow for me was being told I can’t drive now for 6 months! And 6 months thereafter any further attacks. So my independence has been taken, routines have to change, but it can be done. Then my mind has started to wonder – do I want to be responsible for the kids in the car and other people on the road… what if?
But then, what if nothing ever happens again, ever?!
I’ve also gone from dreading it happening again to wondering if it happened again maybe I might see a sign or symptom, so I’ll know when it’s going to happen?
Because what if I’m crossing the road, what if I put my children (my youngest only being 2 and a half) in danger?
Drinking alcohol has to be done sensibly. I think mainly as dehydration is one of the key triggers. For me, the day it happened I had 4 cups of coffee and no water all day, well that’s school holidays for you – no time to think about me!
So water now has to be a must. I haven’t had a drink yet as I’ve been taking painkillers but I’m sure I will in time.
How would the kids react?
So far we have drip fed information, so not to scare them. So far they know I have had a cool gadget put in to keep me safe! And if I was to faint what would you do? Our eldest is almost 8 and said “I’d call 999″… phew!
Fitting Into My New Genes 