Dealing with HCM and more.

It’s been awhile, I’m sorry, I just tend to write here when I need to vent or just feel like talking.

I find myself irritated sometimes with all of this, with this thing that I can’t ever change but so so badly wish I could sometimes, right now I think it’s harder for me to deal with because it’s so hot in the UK [for once] and I’m not coping with it very well, as expected. Now I’m a summer baby, so I’m all for the sun etc, but it just SUCKS when you can’t actually handle it and it’s just like, you can’t breathe properly, you get too hot, it feels like you could faint because your blood pressure isn’t right, and it’s so FRUSTRATING to me. 

This whole thing is frustrating, really, I mean right now I feel sick, and like there’s a slight pressure on my chest, and all I can do is sit here and hope it’ll ease because I know it’s the heart condition and I’m used to this, but I’m 19 and I really don’t want to be used to it, I want it gone, I don’t want too feel this sickness, this chest pressure, this anxiety that comes with it because I’m scared it could turn into something worse.

I just, it’s frustrating, it’s irritating, for sure, it really is, but I have learnt to see myself through these bad times because if i didn’t I don’t really know what I’d do

One more appointment down.

It’s weird to think that nearly 7 days ago, I was on my way to another heart hospital appointment, dreading what was to come, and now it’s done with and I don’t need to think about it for another year. Well, I guess I do a little bit. All went well at the appointment, my sister and mum are both gene carriers, but doing well, which is great, and good news, but then there’s me, and i’m the one that get’s the most attention and speaking too. I kid you not, the lady literally told said to me “okay so -insert name here-, you’re a little different, because your heart muscle is thicker, quite a bit thicker” and I sat there and just..laughed, because I’m so aware of this, so so aware of this, and it’s something that was said last time too, and it just came across a little insensitive to me, but I get that she’s doing her job.

Anyway, the appointments went well, I’m on lower medication that’s twice a day, so it’s the same amount I was on before, just now its half and half so to help with my blood pressure problems, since I’d been feeling dizzy alot, but still need to be on the amount of meds I’m on now. I also spoke alot about an ICD, and for those of you who don’t know, an ICD is

"An implantable cardioverter-defibrillator (ICD) is a small battery-powered electrical impulse generator which is implanted in patients who are at risk of sudden cardiac death due to ventricular fibrillation and ventricular tachycardia.”

according to wikipedia, anyway, and I’m apparently in need of one of these for safety purposes so that i can prevent a possible episode via one of these magical things. i’ve never been comfortable with the idea of getting one though, so i’ve said no to it alot, but it’s constantly something they’ve brought up. this time i got info on something called an S-ICD, which is basically the same thing, only it hasn’t got a pacer in it, but I don’t need that anyway. I feel a bit more comfortable about that, but I’m still not sure about surgery, it’s just a big deal. I’m sure alot of people perhaps think I’m being silly, and I should just get it, but I’m 18, nearly 19, and I’m thinking about alot of stuff that most people my age don’t have to think about. 

I don’t know, I’m waiting on an info package on it now, and we’ll see how we go from there, the S-ICD is fairly new in the world of medicine, though it has been used plenty in the UK, I’m told. Anyways, that’s enough from me, until next time.

Hospital Appointment

I was thinking about how much I dread hospital appointments today, so I figured it’d be good to write a blog post about it. I mean, no-one really likes hospitals do they? No-one wants to go, and I guess the fact that I don’t want to go is just something everybody feels, but still, I feel like..I shouldn’t , in a way, purely because this is a rest-of-my-life thing, this isn’t just a random appointment, this is something I’ve done every year/every 6 months, depending, since I’ve been little, and it’s something that I still haven’t gotten used too. I guess, maybe some of it is because when I was younger, this was never said to be a life thing, it was an “until you’re 20 something unless you’re diagnosed” thing, and well, as we’ve all noted, I was diagnosed.

I was speaking to a friend about having to go to the hospital the other day, and I was laughing about how my medical folder seems to get huger and huger every time I go, and it’s just funny to me, that this thing carries so much information about the way my heart has changed over the years, and how it also carries information that relates from my grandad, who past away from said condition, and my mum, who is a gene carrier of the condition, but doesn’t have said condition, just symptoms. It’s just all very odd, how there’s so much information about my heart and other peoples hearts in this pages and pages of paper, and…I guess, it’s kind of interesting too. And well, you kind of end up being this person that knows a lot of useless facts..or not so useless, in your world, about the heart and everything about it, and, I realise that this must be the same for anyone with a medical condition, you just end up knowing so much about a certain area of your body because you’re forced to learn it every single hospital appointment. 

Well, that’s it from this post, I don’t know how to end these things, so, I’ll see you next time?

First post.

So this is my first blog post, it’s currently nearly 4am in the morning, and I finally decided to make this blog - I wish I had a real reason for wanting too other than I feel like it’d be a good way to let out my emotions and the highs and lows of having to deal with the things I deal with on a daily basis while living with HCM. I think, the thing is, with HCM, it comes in so many different forms, and no-ones experience with it is the same, and I guess thats the same with all diseases really, everyone deals with the diagnosis and the effects of the disease in different ways, but we can all relate and try to help, even with those who have something different wrong with them, there’s always that relation there - of having something wrong and having to deal with it each day.

I often find myself thinking and day-dreaming about what “could” happen to me with HCM, instead of thinking about the now, and what I could be doing instead of thinking about what could happen to me in life - because there’s no point dwelling on something that can’t be changed - you can’t change the diagnosis, but you can learn to live with it, and I guess that’s the point of this post particularly - is to know that life goes on after diagnosis of something like this, and that things will be difficult, and you will face trials - but you will also come out much stronger, so that’s the message of this post, be strong, be positive, be okay, because  things do go on, life goes on, and so do you.