Here it goes again!

Wow, this has been quite the week. First of all, thank you to everyone who commented or sent me a message. It can feel pretty lonely sometimes to have this machine inside me that acts of its own free will, and even though I wish none of us had them, it is really comforting to read other people's postings or hear their feedback.

Well, apparently I was in for yet another surprise this week. After the shock with my boyfriend, my doctor increased my beta blocker in hopes it would calm my heart rate and thus prevent any other shocks. Unfortunately, while I was visiting a friend in Boston yesterday, it went off AGAIN, while I was walking in the heat. This one was actually stronger than the first shock I had back in June- when it went off, it knocked me to my knees. I am extremely fortunate that I have never been alone or in a dangerous setting when I get shocked (like a car or stairs or something). My friend was with me and she knew what was going on so she was able to keep me calm (because unlike the first two shocks, this time I really lost my cool and got upset).

Spent today (almost all of it sadly) at the hospital getting my device interrogated. My heart rate was 300 when it went off yesterday! That's crazy! They are increasing the beta-blocker more, and are keeping me at minimal activity level until I get to see my doctor on Monday. Not really looking for feedback, although it is welcomed, just needed a place to get this whole story out of my system. I just don't want to be afraid of getting shocked all the time- I am starting to feel like this thing is pointless because I have not had a life-threatening episode. My heart beats way way too fast, I understand that, but it doesn't seem to be dangerous to my health. So we'll see. Thanks again for all the information, encouragement, and mutual amusement at the absurdity of my earlier shock. Love to all and God bless.

Rae Marie

5 Comments

ICD and Heart rate

by peter - 2007-09-09 02:09:09

300 beats per minute wow! I had 200 beats a minute and that was enough to send me into heart failure and did. I only just survived by the skin of my teeth ending up in in intensive care where the doctors were sure that I had gone past the point of no return. You should have an AV node ablation and be made pacemaker dependant to stop any fast rhythyms reraching your ventricles. I have had this proceedure, its painless and my heart is performing well. Good luck

Needs Better Treatment

by SMITTY - 2007-09-09 03:09:38

Hello Sunsh1ne,

I’ll be a little more blunt than a gentlemen like Peter was. I say get to a doctor that knows what in the hell he is doing. Otherwise your friends and relatives may get to practice their slow walking, soft talking and sad singing routine.

But based on what you have told us and what I have seen from others, you are in greater need of help than you seem to be getting. Unfortunately this is not uncommon. Too many doctors seem to use the “cook book recipe” method of handling pacemaker/ICD patients. By “cook book method” of treatment I mean they follow the instructions they get with the device, or those given them by the manufacturer’s representative and think “I implant it and turn these little dials to these set points and everything will be OK.” As we all know, it ain’t always that simple.

We can be victims of misdiagnoses or we just may be the individual that we are. Which means that no two of us will always react to a given treatment the same way. We must have a doctor that has the ability to treat us as an individual that may need something different from the last person he treated.

I wish you the best.

Smitty

ICD and Rapid Heart Beat

by BABlocker - 2007-09-09 08:09:02

Rae Marie,
If your heart rate was 300 beats per minute, your arrythmia may have been ventricular tachycardia, and it could have deteriorated to ventricular fibrillation, a life threatening arrythmia. So, I'd say that your ICD did it's job. In any event a heart rate of 300 beats per minute is health threatening if not life threatening and if that rate had continued over time, any number of problems such as congestive heart failure could occur.

All this to say that your ICD is there for just that purpose; to stop any abnormal rhythm and restore your heart back to a healthy rate and rhythm.

You may need an antiarrythmic medication such as Tambacor, Rhythmol or Sotolol in the end.

The interrogation should have shown what rhythm was occuring at the time of the event.

Finally, your ICD may have to be adjusted if it was an inappropriate therapy delivered, but if your heart rate was that high, you may have needed it.

Good luck to you, and let us know what your Dr. says and decides as the next course of action.

Take Smitty's recommendation!

by auntiesamm - 2007-09-10 04:09:36

Rae Marie,

I have little knowledge of the inner-workings of our cardiac devices but Smitty is an expert having done so much research and reading. Since the day I signed on here over a year ago I have found him to be "spot on" with all of his postings. We can depend on him to tell it like it is!

It is obvious even to me that something is not right or you wouldn't have experienced this 2nd episode. Get yourself to a cardiologist STAT! Smitty is absolutely right - you are in greater need of medical help than you realize. It may be time to find a new cardiologist. In the meantime take yourself to the ER if you can't see a doctor right away. I pray God will keep you safe while you seek the medical intervention you need.

Sharon

Increased/changed medication

by turboz24 - 2007-12-05 11:12:48

I to have a similar issue. For my first Vtach I received the ICD and 25 mg toprol XL. I got hit with a 2nd Vtach at 285 bpm, he doubled my dose of Beta Blocker. Then I got hit 2 times, one at 245 bpm, another at 218 bpm, so he once again doubled the dose (to 100 mg), and I'm scheduled to go back into the hospital for a medication switch.

You know you're wired when...

The mortgage on your device is more than your house.

Member Quotes

The pacer systems are really very reliable. The main problem is the incompetent programming of them. If yours is working well for you, get on with life and enjoy it. You probably are more at risk of problems with a valve job than the pacer.