Newcomer

Hello all - can I start by saying how lucky I feel to have found this site and how lucky we all are to have the technology that enables us to 'chat' like this.
I had my first ICD implanted 2 weeks ago. I live in Tasmania, the island state that sits at the bottom of Australia. I was diagnosed with Non Compaction Cardiomyopathy 6 months ago and have a recent family history of Sudden Cardiac Death, hence my need for an ICD. The reason it is so great to have all of you to connect with is that heart disease is very isolating. As is this thing that is so new to me - my ICD.
Reading your stories makes me feel less alone. Tasmania feels a long way from anywhere sometimes. I am recovering well from the ICD implantation - the procedure, which I had to have done in Melbourne, was relatively straightforward and apart from the sensitivity of the incision area I'm doing OK. I am going a bit mad though as I still am not driving and I live in a rural area - I have to get the OK from my cardiologist and I'm changing to a new one and can't get an appointment until late September. I am hoping my GP will give me the all clear on Monday instead.
My friends think that all my problems are solved now and that my life will simply go back to how it was before I found out I even had a heart condition now I have an ICD. As if getting an ICD is a cure. I wish! I do feel very lucky though, that my condition was discovered. My sister didn't get that luxury. Modern technology is simply amazing.
Anyhow, thats enough about me, just wanted to say hello to people who understand - and also to thank you all for sharing your experiences.

5 Comments

welcome!

by sydgirl - 2011-08-05 07:08:16

Welcome Karen, I'm originally from Tassie also so know the isolation you feel. I got my pacemaker in April this year. It is a weird feeling when something so major happens in your life and then its just...life as normal!
Good to hear it all went well and hope it continues to go well!
I have my second Pacemaker test next week and am kind of excited to find out how much or how little I've used it. Its still all so new to me also.

thanks all

by KarenHall - 2011-08-05 08:08:43

Thanks so much for your responses! Was very excited to wake up and find 3 overnight! sydgirl, nice to hear from an ex Tassie girl, glad you are doing well. I have yet to have an 'interrogation' (except the first one upon leaving hospital) so I am looking foward to it too. I get little 'pops' in my heart - a bit like someone twanging a small rubber band in my chest - and am curious what this is. Pookie, yes I have the same as you, just a different name I guess - your being more descriptive! I am very impressed about how much info a lot of people have about their conditions in these sites, I am not sure if I am just ignorant or if other countries (and in particular the US) give our far more info. Maybe the patienst are more pro-active and ask? Not sure. I have got most of my info off the internet. Anyhow, there aren't many of us NC folks, I do belong to a great Facebook page for NC that I get lots of info from. Thank goodness for the internet. Am interested that you have a pacemaker, my problem is arythmia, not a slow heartbeat although I do have low blood pressure as standard. the arythmia and my family history made me a candiadte for an ICD, although my home state wanted to delay it and I sought a second opinion in Melbourne and my ICD was installed a couple of months later. Thanks Gulliver80 - one of my friends told me that my surgery etc would be a peice of cake compared to her Caesarian - not sure what the piont of that was, as if its all about the length of the scar! I'm sure she meant well, but obviously we all know that the underlying reason we got an ICD still remains and the device is there if/when our hearts let us down. I am in the very early days of getting used to this - both my condition and the ICD, and I guess its a long journey. xxx

n Scotland we Say

by gulliver80 - 2011-08-05 08:08:45

Karen, I resonate fully with your comments - i first had my ICD fitted on 23 May after a five week stay at the hospital pleasure!! I have an ICD for Obstructive Cardiomyopathy, Atrial fibulation and a slow HR (28 at resting) but to be fair I have not been so lucky after having had a second op for implant due to loose leads and wrong position - that said im starting to feel A LITTLE BETTER EVERY DAY........
Its strange as some people are quite flppent by with the whole thing, although i suspect that thats peoples way of playing it down! Not to worry though.... I, like you feel extremly lucky though, like I have been blessed from someone above - yet its tough. The driving nan does suck, I bought a new motor bike from my hospital bed - yoiu need some focus right!!
Take every day as it comes, spk soon.

???

by Pookie - 2011-08-05 11:08:50

Hi & Welcome......so glad you found us:)

Question: Is Noncompaction Cardiomyopathy the same thing as Left Ventricle Noncompaction, cuz if it is, I have it!!!!!!! My Ejection Fraction has been @ 62 ever since I received my pacemaker back in 2004 and I've been doing great lately. I have a MIBI test to check my EF every 2 yrs and so far - so good.

Again, welcome, and I'm so glad you found this site.

Oh - and one of my best pacer buddies is from Taz as well, as soon as she sees your post, I'm sure she will chime in.

Pookie

Tassie boy

by highmark - 2011-09-03 05:09:42

Hi Karen,

I too have just had an ICD fitted in Melbourne, I suffer from consuse VT and it happen with out knowing or any symptons, I have only return home Sunday 28th Aug 2011.

it has been a tough start as I had first shock of 20 kj Monday 29th in the afternoon and 3 more shocks Tuesday afternoon 20, 20 36kj in a 3 minute cycle, presented to A & E spend 2 days in hosp , changed some drugs and I am travelling well now.

I am pleased in relation to the shocks as they have not effected me greatly and when I received the 3 of them I didn't even loose a stride when walking.

I now know what happens when it goes off and feel very confident that it will not create a huge issue if & when it happens again.

All in all it is nice to read of other local people that have ICD's fitted and there ongoing experenses.

Thks

Steve

You know you're wired when...

You participate in the Pacer Olympics.

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