More than just a hiccough

Hi there, I wrote some time ago about the fact that when I underwent an "upgrade" to a biventricular pacemaker, the cardiologist accidentally put the lead for the right ventricle into the port for the left ventricle and vice versa.

I’d been having awful jolts in my diaphragm and so many adjustments were made and then finally the supposed 3rd lead was turned off but obviously since that was connected incorrectly, the jolts increased and I came close to fainting or worse. Thankfully a technician with more time agreed with my own assessment that the wrong lead had been turned off. It’s very hard to convince a top guy that he’s made a mistake especially when the computer is showing everything to be OK.

So, if you know in yourself that things are not right, then just keep on fighting to be fully checked out and if you are having diaphragmatic stimulation after lots of adjustments, then just question it. I felt the need to warn people of this possible problem as I’m betting I’m not the only person this has happened to. It has been a distressing 18 months.

cheers,

justjayne (Australia)

4 Comments

important life saving point

by Hope - 2012-06-30 08:06:01

Hi! I do remember your post. So glad you kept fighting for yourself. Thank you for reminding us we need to listen to our bodies and take charge. Take care. Hopeful Heart

I probably wrote before but

by ElectricFrank - 2012-06-30 12:06:11

Why have they just turned off the offending lead. If you needed a biventricular pacemaker in the first place you still do. While it would involve some minor surgery about like a replacement, it would seem to be worth while to open up the pocket and switch the leads in the port.

frank

Thanks so much

by justjayne - 2012-07-01 06:07:06

Hi Frank,
The problem was that because of the confusion the doc thought he was turning off the third lead because I was getting such shocking diaphramatic stimulation. In fact, due to the mix up, he'd turned off the wrong lead which led to me being very unwell which is how the whole issue was picked up by me. He naturally wasn't overly keen on accepting that he'd made an error when he upgraded the pacemaker. The third lead is now back on at a low setting. My message really was that I wanted to remind people that if they think something is wrong then it quite likely is wrong so follow it up. I agree that to save confusion in the future it would be simpler to change the leads but as my ejection fraction is under 20 (no longer abel to get an exact reading), I am loathe to put myself through the risk of infection which is also what advice I'm getting from my cardiologist. Thanks so much for your reply. I was beginning to think that no-one really bothered replying to messages so its good to get your point of view....justjayne

Hi Hopeful Heart

by justjayne - 2012-07-01 06:07:11

You have no idea how delighted I was to get your response and from such a beautiful name.....bet you're a lovely soul too.
Thanks for getting the hang of what my message was (albeit a bit confusing).
My soul mate, and love of my life who was my previous husband died from cardiomyopathy 17 years ago (but only really a heart beat away) so I am aware of the need to be vigilent about my own situation. When I got cardiomyopathy 3 years after his death I thought it was quite romantic for a while. Now that my ejecion fraction has fallen below 20, its not quite so romantic but I have a wonderful husband (different in every way to my last) to give me encouragement and kids and grandkids to make the tough days better. I wish you nothing but good and as much health as is possible for you.. justjayne

You know you're wired when...

Jerry & The Pacemakers is your favorite band.

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