Cardioverter Defibrillator implant

screwed up post

CranialSponge
Dear gawd Iwinder...

So glad you're still with us !

Reading your story scared the bejesus out of me and hit a nerve. I've had arrythmias (palpitations) for years and take beta blockers to try to keep it under control, doctors have no idea what the problem is other than the fact that I was born with a slightly deformed atrial valve that doesn't quite work properly causing a slight aortic insufficiency, but they don't think that's what's causing the problem. Had my first attack when I was 15 years old.

But my palpitations have never been more than a minute or two in length (knock on wood), but even at that short interval I experience the oxygen instantly cutting off to my brain causing me to almost black out, shortness of breath, etc, followed by a massive headache afterward.

I can't even imagine such an intense attack lasting for 30 minutes like what you went through !

You are one helluva lucky man, my friend !

I can only hope that I'll be surrounded by such great EMTs, doctors, and nurses like you were when my time comes...



I'm going to crack a nice cold bubbly in your honour.

Cheers... and here's to second chances at life !

Yes indeed the air being cut off is a real big deal, it is very hard for anyone to imagine what it is like until it happens to them personally.
I have been on Beta blockers for 20 years with good results, they changed my dosage and brand to something new.
A lot of my old meds are gone now replaced with a different cocktail now.
To get my meds sorted out took about 10 days and 6 blood tests a day at 6 vials a shot......so far so good as its been a week out of the hospital now with no problems.

Do you still have palpitations?
Sorry that my story spooked you but I can relate to the fear, even as I type this now I have this feeling of dread in the back of my mind but I can't do anything about it.
Second chances at life!.....You just really drove the nail in as to how fortunate I am.
I am a lucky guy as you say and I really appreciate your post and your sharing your story with us here.

Many thanks,
Regards, Iwinder

lovebeck
reply to post by Bedlam

 

The only thing that interferes with the pacer part of the IVCD is a magnet, that's how you turn it off. As far as the defibber goes, who knows...Hopefully an EMO WON'T happen and you'll both be o.k.

edit on 28-3-2014 by lovebeck because: (no reason given)

Hi all, this is Iwinder's wife,when you mentioned that magnets can turn it on or off, how strong of a magnet does it take. Looking at the front of our fridge I'm thinking it could be an "off limits" zone. Have already read the warnings about the scanners used at shopping centres and airports and that they don't pose an issue as long as you don't linger near them.

Also with the risk of infection that you mentioned is there any dietary restrictions that can help ward that off? I'm thinking along the the lines of pH (acidic/alkaline) or as long as the diet is balanced there should be no issue.

Appreciate your experience and knowledge with this.

Namaste,
YogaGinns

ps Surprisingly enough we have a neighbour who had one implanted almost six years ago and is it now coming up for replacement. She was only 45 at the time, and assures us that she no longer even thinks about it. Given what we have told her about this one it looks like the technology has come a long way in that short of a time.

Thanks to everyone for your replies and well wishes. This has been a very scarey few weeks for us and we are now on a steep learning curve. Looking for any and all input, questions, comments and personal stories that you can share.

You can call it fate, karma, kismet or just plain old blind luck that we had a snow storm that day and I decided to whimp out and work from home. Had I gone to work Iwinder would have been alone.....not wanting to think of those consequences.

Amazing how time stands still and everything moves in slow motion during those situations, we are not far from the hospital 5 minutes on a good day with no traffic. Given the treacherous roads that morning I am so glad he was good hands right from the start. I have always held a special place in my heart for "first responders", as my dad was a fireman, but now I owe them debt of gratitude. Second chances don't always happen.

Namaste,
YogaGinns

reply to post by Iwinder

Yes indeed the air being cut off is a real big deal, it is very hard for anyone to imagine what it is like until it happens to them personally.

I have been on Beta blockers for 20 years with good results, they changed my dosage and brand to something new.

A lot of my old meds are gone now replaced with a different cocktail now. To get my meds sorted out took about 10 days and 6 blood tests a day at 6 vials a shot......so far so good as its been a week out of the hospital now with no problems.

Do you still have palpitations?

Sorry that my story spooked you but I can relate to the fear, even as I type this now I have this feeling of dread in the back of my mind but I can't do anything about it. Second chances at life!.....You just really drove the nail in as to how fortunate I am. I am a lucky guy as you say and I really appreciate your post and your sharing your story with us here.

Many thanks,
Regards, Iwinder

I do still get palpitations if I push myself too hard, but very rarely... However, for the past 6+ months I've had 3 full episodes for no apparent reason, which is something I haven't experienced in years.

So yes, I'm getting a little concerned... which is why your story hit home when I read it.

No apology necessary, if anything, your story has been a wake up call and I thank you for that. I need to stop pretending that everything is okay and get my arse back to the doctor's and let him know what's been going on.

Yes, I completely know where you're coming from when you talk about that quiet little sense of dread floating around at the back of your mind. You try to put on a big brave face on the outside for everyone else's sake, but on the inside it's a soft haunting sensation that never quite goes away... Anytime I've ever had an attack or even a slight flutter, I always think to myself: "Is this it ? Is this going to be the one that does me in ?"

After the experience you've gone through, I can only imagine how that deep seeded fear would become that much more prevalent, sneaking up on you more regularly now as a "reminder".

I wish I had some info for you regarding your new "state of the art" technology, but that subject is completely chinese to me as well...

BUT...

I did find a support group forum online called the Pacemaker Club. I'm guessing there's probably a ton of great info on there by the looks of it... so get out those reading glasses and get perusing those forum sections, my friend.

I'm wondering if there are any support groups in your area ? Don't be suprised if there actually are... Might be a question to toss at your doctor the next time you go in to see him/her ?

Keep us posted with your progress !

Cheers.

reply to post by YogaGinns

You can call it fate, karma, kismet or just plain old blind luck that we had a snow storm that day and I decided to whimp out and work from home. Had I gone to work Iwinder would have been alone.....not wanting to think of those consequences.

Amazing how time stands still and everything moves in slow motion during those situations, we are not far from the hospital 5 minutes on a good day with no traffic. Given the treacherous roads that morning I am so glad he was good hands right from the start. I have always held a special place in my heart for "first responders", as my dad was a fireman, but now I owe them debt of gratitude. Second chances don't always happen.

Scary thoughts indeed !

Apparently, somebody wasn't ready to let Iwinder into "the club" just yet...

I'm thinking Iwinder will never complain about our crappy winters north of the 49th parallel ever again. *chuckle*

All that damn Canuck snow saved his life !

Who'd a thunk ?!

YogaGinns

lovebeck
reply to post by Bedlam

 

The only thing that interferes with the pacer part of the IVCD is a magnet, that's how you turn it off. As far as the defibber goes, who knows...Hopefully an EMO WON'T happen and you'll both be o.k.

edit on 28-3-2014 by lovebeck because: (no reason given)

Hi all, this is Iwinder's wife,when you mentioned that magnets can turn it on or off, how strong of a magnet does it take. Looking at the front of our fridge I'm thinking it could be an "off limits" zone. Have already read the warnings about the scanners used at shopping centres and airports and that they don't pose an issue as long as you don't linger near them.

Also with the risk of infection that you mentioned is there any dietary restrictions that can help ward that off? I'm thinking along the the lines of pH (acidic/alkaline) or as long as the diet is balanced there should be no issue.

Appreciate your experience and knowledge with this.

Namaste,
YogaGinns

ps Surprisingly enough we have a neighbour who had one implanted almost six years ago and is it now coming up for replacement. She was only 45 at the time, and assures us that she no longer even thinks about it. Given what we have told her about this one it looks like the technology has come a long way in that short of a time.

edit on 29-3-2014 by YogaGinns because: grammar

Here's some information about magnets and magnetic fields from the manufacturer of your husband's device.
www.medtronic.com...

There's nothing I can really add to that other than to reiterate never to place a magnet directly over the device as this can prevent some devices from working although when the magnet is removed, the device will resume working.



As for diets which fight infection, hmm. A healthy diet is always good but won't protect the wound from becoming infected.
Make sure to keep the wound clean. That prevents infection more than anything.
Usually a wound becomes infected within a short time post implant and is very noticeable although if you have any concerns at all contact your local clinic.
By now, the wound should have started to heal quite nicely.

Without getting into an alkaline/pH-balanced diet debate, I can tell you categorically that there is no physiological basis nor any clinical evidence that they have any effect on the health of a patient any more than a good balanced diet does.

reply to post by CranialSponge

I did find a support group forum online called the Pacemaker Club. I'm guessing there's probably a ton of great info on there by the looks of it... so get out those reading glasses and get perusing those forum sections, my friend.

Thanks for that information, I just took a quick look and bookmarked it for future reading.
Regards, Iwinder

reply to post by Pardon?


Pardon:

Thanks again for all the information you have put up here. I know that there will be many questions come up over the next weeks/months, currently my head is still spinning. Once we find out more about his restrictions as to driving and working around the yard and using tools, etc, it will be much easier. Right now it is rather surreal and hard to fathom that its in there and what it is meant to do.

It definitely is a two sided coin; where one offers a feeling of security that help is immediate should it be needed again ... the other is the worry of when, where, what if it should go off (the unknown of what to expect).

I still remember back in the '70s when people with pacemakers couldn't be in the same room with a microwave, my how times have changed.

Namaste,
YogaGinns

YogaGinns
reply to post by Pardon?

 

Pardon:

Thanks again for all the information you have put up here. I know that there will be many questions come up over the next weeks/months, currently my head is still spinning. Once we find out more about his restrictions as to driving and working around the yard and using tools, etc, it will be much easier. Right now it is rather surreal and hard to fathom that its in there and what it is meant to do.

It definitely is a two sided coin; where one offers a feeling of security that help is immediate should it be needed again ... the other is the worry of when, where, what if it should go off (the unknown of what to expect).

I still remember back in the '70s when people with pacemakers couldn't be in the same room with a microwave, my how times have changed.

Namaste,
YogaGinns

Talking to numerous patients after their implants and at too many follow-ups to count, the general consensus is that the feeling of dread passes fairly quickly with the feeling of security more than making up for it.

Think of it this way, thousands of people die every year for lack of a defibrillator.
That's not going to happen to your husband.

I won't try to tell you otherwise, it's not pleasant when they go off. It's been likened by some as being kicked in the chest!
But the result is a normally beating and pumping heart.
And life.

reply to post by Pardon?



Thank you again, I realize that any discomfort from the device triggering will be trivial compared to the alternative. The "owners manual" advises that the person should find a seated or prone position at the first signs of arrhythmia as the jolt may cause you to pass out leading to further injuries. Guess that's why the driving ban and not climbing ladders, etc. Will be a lot of changes to work through, at least for the first few months.

Here's hoping that we never find out what happens.

Namaste,
YogaGinns

CranialSponge
reply to post by YogaGinns

 

Scary thoughts indeed !

Apparently, somebody wasn't ready to let Iwinder into "the club" just yet...

I'm thinking Iwinder will never complain about our crappy winters north of the 49th parallel ever again. *chuckle*

All that damn Canuck snow saved his life !

Who'd a thunk ?!

CranialSponge:

I'm truly happy too that "the club" turned him down, as I intend to keep him for myself for awhile yet. And yes that snow did save his life, although the events of the day may have shortened mine somewhat.

For anyone wondering here is a link to a rant Iwinder went on not that long ago:

"Good bye you son of a Bitch winter."
www.abovetopsecret.com...

Guess what's on the menu for dinner? And its not steak, taters & beans.

You take care of yourself too, and don't put off getting checked out. It will give you peace of mind.

Namaste,
YogaGinns

reply to post by Pardon?

Talking to numerous patients after their implants and at too many follow-ups to count, the general consensus is that the feeling of dread passes fairly quickly with the feeling of security more than making up for it. Think of it this way, thousands of people die every year for lack of a defibrillator. That's not going to happen to your husband. I won't try to tell you otherwise, it's not pleasant when they go off. It's been likened by some as being kicked in the chest! But the result is a normally beating and pumping heart. And life.

I know that the wife already posted a reply to you but I would like to add my thanks as well for the above post.
I figure if I can handle the real shocker in the hospital while fully awake this in chest zapper should be a walk in the park I think.
As you say it brings pain and life all in one package.

Regards, Iwinder

Stay away from electromagnets. And permanent magnets. Thats a no-brainer. I would also consult some doctors to see if they know anything about stem cell therapy to regrow the sinoatrial node and graft it to the nerves-but that is just my two cents. It would be highly experimental at this point in time, but would be worth it as then you wouldn't need an external device after the heart reestablishes synchronization with the brain and all that jazz. Ingesting Ganoderma Lucidum, Phellinus Linteus, and Antrodia Cinnamomea would help your body renormalize it's cellular functions after the massive attack.

reply to post by Iwinder


Oh it will definitely work when its time. My mom allegedly knew someone who had one. He died of something unrelated to his heart and the thing kickstarted his heart and kept it going and so they couldnt pull the plug and ended up paying for an ever increasing bill with no idea what to do.

wantstoknowmore
Stay away from electromagnets. And permanent magnets. Thats a no-brainer. I would also consult some doctors to see if they know anything about stem cell therapy to regrow the sinoatrial node and graft it to the nerves-but that is just my two cents. It would be highly experimental at this point in time, but would be worth it as then you wouldn't need an external device after the heart reestablishes synchronization with the brain and all that jazz. Ingesting Ganoderma Lucidum, Phellinus Linteus, and Antrodia Cinnamomea would help your body renormalize it's cellular functions after the massive attack.

Thank you for this information and there may be something to it. We always considered Iwinder's cardiomyopathy as being idopathic (without known cause) however his brother has recently been diagnosed with cardiomyopathy and diabetes as well. This is now looking to be a genetic disorder.

His recent angiogram shows that there is no blockage but that his "functions are really messed up" which I would think means chemically imbalanced.

The really freaky thing is that the same day Iwinder went into cardiac distress, his brother was in the hospital having an angiogram performed. And no they are not twins, few years apart in age.

I am familiar with the Gano tea made from the Reishi mushroom. Think I may even have half a box in my office, usually only drink it when I'm feeling low immune wise. How long of a shelf life would that tea have? Mine are probably 4 years old now.

I don't understand everything in your post, however, you have given me lots to investigate.

Namaste,
YogaGinns

Oh it will definitely work when its time. My mom allegedly knew someone who had one. He died of something unrelated to his heart and the thing kickstarted his heart and kept it going and so they couldnt pull the plug and ended up paying for an ever increasing bill with no idea what to do.

reply to post by GogoVicMorrow

I hope you are joking but I do believe you are serious, I do not need to hear that after dieing a few weeks ago.


Tell me its a joke please.
Regards, Iwinder

died and still walking?
shhh, Iwinder be quiet!
There's gun nuts here been waiting around for just this moment since forever!

expect incoming zombie rounds...


hey man we are just glad heaven don't want ya.....just yet

twas me and it might be...
id be taking a touch of cayenne on the tongue, and drinking mistletoe tea...maybe some hawthorn...garlic (buffered)
beet roots, celery...

Iwinder


But going 240 BPM for half an hour is all new and very scary indeed.....I was panting like a dog in the desert after a 30 mile run.

Yes, it's not pleasant at all and decidedly unsettling.
I've experienced that twice. Once when I was around 11 years old and was nervous before a school speech contest, and once in hospital during a cardiac cathaterisation when I was 15.
I have Wolff-Parkinson-White Syndrome and experience palpitations every so often. The medication they gave me when I was younger they later found out made it worse!

Anyway, now I can manage it and luckily it doesn't hold me back from anything.

Good luck to you and all the best

reply to post by Danbones

The wife agrees with you Dan, she teaches Yoga and she has many plans for me and none will be pleasant:-)

Regards, Iwinder