24/7 Pacing

Hello my name is Taylana I am a thirty-three year old mother of two. I have Hypertrophic Cardiomyopathy and an implanted pacemaker/ defibrillator since 2005. Unfortunately, the impenitence lead was recalled a year after the implant. I have not really used the device much according to the pacemaker clinic which I have been very thankful for.

Anyways, this week my doctor suggested that due to my condition I should be paced all day everyday. Has anyone else had to do this? and does it help or does it eventually inhibit the heart function? I have been told two different outcomes by two different doctors and am very tied as to whether I should allow them to do this or not.

6 Comments

Hi

by Casper - 2013-11-06 09:11:36

Hi Taylana,

I wish I could give you some sound advice, I'd like to know this answer myself.

I wonder why one of your doctors suggested you be paced all day everday, when your pacemaker clinic said you really are using the device.

Hopefully, there will be others who can chime in here, we have a lot of very knowledgable people here.

Good luck,

Casper

?

by Tracey_E - 2013-11-06 10:11:30

Most pm's just sit back and watch, only kick in when the heart slows down too much or skips beats. The heart always has a chance to beat on its own first, so it doesn't make sense to me to say you'll go from pacing rarely to pacing every beat. Are they talking about upgrading you to a CRT so the ventricles will beat in sync? Usually you want to pace as little as possible but synchronizing the ventricles can improve heart function.

That said, I have paced every beat since 1994. Many of us do, but I have a very different problem from yours. So far it has had no effect on heart function, my EF is the same as it has always been. It's always a risk long term, but in my case pacing isn't optional so it is what it is.

How do you feel now? Are you able to get through the day and take care of your kids or is everything a struggle? Just my opinion, but I would hold off making any big changes as long as you feel ok.

Interesting

by rnff2 - 2013-11-06 10:11:47

Hi,

I have HOCM and I have done a lot of research about it since getting my diagnosis 4 years ago. I have never heard anything like that. Do you see a HCM specialist? If you don't that would be my first suggestion. I know my pacemaker is set to pace me the least amount possible. PM me and maybe I can help you find an HCM specialist if you don't have one.

I would love to know the answer to this also.

Good luck.

: )

by Tmurphy - 2013-11-07 09:11:24

When I had my device changed last year they told me that they did not want me to rely on the pacemaker it should only be used as a back-up when necessary. This made a lot of sense to me. I do realize that I have a very large septum (rating at a 3.3 in thickness with very little obstruction) but I am asymptomatic majority of the time. Once in a while I will have palpitations or just be exhausted as if I worked all day but in all reality this really is very seldom. I have more issues with retaining water than anything. I have been dealing with HOCM for 20 years now and it has been a very long and interesting journey. However, this year I am seeing a new doctor because I no longer have health insurance. This doctor feels that pacing me 24/7 would provide me with just a little better life quality. I suppose my concern lies in if the pacemaker is working all of the time will the heart get weak from it not having to do the work? Thank you all for your imput : )

no

by Tracey_E - 2013-11-07 11:11:56

That's not how pm's work, they don't do the work so no, they can't make the heart weak. All they do is send a little electrical signal that mimics what the heart should be doing on its own, the heart responds by contracting. Your heart is always doing all the work, it's just a matter of where the signal to beat comes from.

You don't just suddenly decide to pace more, does that make sense? If the heart beats fast enough on its own, the pm won't do anything but watch. Pacemakers are, for the most part, reactive not proactive.

JMHO, but if you feel pretty good, I'd leave well enough alone. A possible long term effect of a lot of pacing is the heart stops responding so it's best to pace as little as possible. If he's talking about a CRT to synchronize the ventricles, that's another surgery which is more invasive than a regular 2 lead pm. They can do a lot to help low EF, but again, I would wait until you really need it.

Pacing 24/7

by phyllisilie - 2013-11-08 02:11:43

Have a Medtronic dual chamber pm placed two years ago and am paced 24/7 due to complete heart block. There is some talk about a third lead but right now my heart is still contracting on its own. It had helped with dizziness, bradycardia and other pre-pm symptoms. However, I feel it takes a toll on the heart as I have great fatigue and shortness of breath. Good luck and get as many opinions until you are comfortable making such a decision.

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