general

hey I'm 16 I just got my ICD planted in mar . 1st & I'm just wondering is there any advice anyone have for me ? I'm really scared & all having this machine inside of me :( its pretty scary and everything is so new , I read all the information my doctor has given me but I want to know stuff from other people with ICDS .

thanks ,
Rachel

2 Comments

Hmmmmm. Scary?

by donr - 2012-04-01 10:04:47

Rachel: It should be - but it's REALLY not. You are the same age as our second granddaughter, who has gone through a couple procedures that are just as scary, so I have a bit of insight into your mindset right now, & I will talk to you as I would - & have -

to Dana (Grand daughter).

Ok, so you have an ICD. You didn't tell us WHY you have it, so I can only guess, but won't. I host a PM - NO ICD, so I can just talk in arm-waving generalities.

First of all, please be thankful that you have the ICD - it just gave you a new lease on life. Essentially a rebirth.

Second - there are far fewer restrictions on WHAT YOU CAN DO than your Dr. tells you. For a REAL, PRACTICAL reason. You can sue him if he leads you astray. Ditto for the Mfgr of your ICD.

Third - we, as the hosts of these devices have a vast cloud of experience in what limitations REALLY are. We have learned the hard way - by getting out there & stretching the envelope.

Fourth- My PM & your ICD work differently in many respects. They both watch & wait to see what our hearts are going to do before they act. My PM just waits a lot shorter period - like roughly between beats & does its little thing for my heart about 99+% of the time. No BIG deal - I never know its doing it. Now - your ICD waits for more dramatic moments to occur & could wait literally years between events where it is needed. BUT - when it is needed, it is a lot more dramatic & attention grabbing than my PM. I have a friend who hosts an ICD & it has acted three times - sh described it as being "...kicked in the chest by a mule..." That's the four-legged variety, not the variety that people wear on their feet.

Fifth - you are very new at this. So, read everything you can IN HERE & ponder it as practical info. It'll take you a while to get the feel for what everyones' experiences are & what they mean to you.

Sixth - I'll cut & paste for you my tongue in cheek take on what the REAL limitations will be on your future life. I'll do it as a Private Message - it's too loooooong to put here.

Seventh - let not your heart be troubled by this life-changing event. As you learn to live w/ it, you will wear your little white nearly-invisible scar as a badge of courage.

Eighth - you have a long life ahead of you - "Live long & prosper"!

Don

Two years on

by pippt36 - 2012-04-14 02:04:41

I was terrified when I had my ICD inplanted. It's two years now and I forget it is there! However, I did not feel like this to begin with. There was nobody to compare notes with so I didn't know if what I was felling was the same as anyone else. After about 18 months I did have an incident where it really hurt for a couple of weeks, for some reason. I had it checked as it was more uncomfortable than it was to begin with - all was okay - and it did pass.
I am very skinng and my ICD sticks out - can even see where the wire is! It doesn't really bother me as everyone says they would not have noticed if I had not told them. It took about a year before I really did forget it was there and the scar took a while before it turned white but looking back, the whole experience was not that bad. The worst thing now is that I have to take a tablet called 'Amiodorone' and one of the side effects is that I have to avoid direct sunlight. I soon start to turn pink if I am in the sun for just about 20minutes. So boring. In the two years I am so lucky that the ICD has not had to fire up and I just thank God that I was lucky enough to have one it. My problem is arrithymia.
Honestly, you will get used to it after a while - the time soon passes.

You know you're wired when...

Bad hair days can be blamed on your device shorting out.

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