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.