Downsides??

Hi, I've had PAF for many years, then last September my conduction system crashed.

After months of trying this drug and trying that drug, I finally had a PM implanted 3 months ago and had an AV node ablation, a month ago.

I feel wonderful, a bit breathless at times, just want to do more, faster, etc. than I am able with it set at max. of 110 bpm.

Does anyone know of any downsides to what I've had done?

I was just so symptomatic and had no qol, so didn't ask, just went ahead with getting my life back.

It's all good but I wonder about the downsides??

Thanks. Bionic Beat

5 Comments

Thanks ....

by Bionic Beat - 2008-05-18 01:05:17

Thankyou for the quick responses, much appreciated!

Months of being on the drugs has caused some damage to the ventricles (they've enlarged) but the docs are hoping that my heart will "remodel" itself.

Instead of a 3 to 6 month recovery, the EP guy told me it would be a year long recovery. Waiting for it to "remodel" itself....??

Maybe that's why they have me between 60 and 110 bpm.

Have an appointment on the 28th, so have lots of questions for my poor EP guy....lol

When my HR zoomed up to 165 and stayed there, it wrecked my whole life. Completely.

The good news, is that I feel great, can get up, dressed and go walking outside!

It's still kind of "weird" to me, that they can disconnect your heart from your brain (via ablation) and that it'll work better!!

Also, being totally "dependent" on a pacemaker, is a bit strange.....should I disconnect my air bag? type questions, keep popping up.

I'm just very greatful that we live in a time when these "issues" can be cured.

Maybe I'm just impatient, lol, after nearly months of being a cardiac cripple, I just want to get moving!

Like I said, it's all good....kinda weird but good.

Thanks again. Bionic Beat




Upper limit

by ElectricFrank - 2008-05-18 01:05:42

Hi,
Unless you have some serious heart condition other than the AV block created by the oblation, there is no reason your upper limit should be set to 110 bpm. You may have to get a bit insistent with them, but ask to have it set higher. I ran into the same problem with mine. My conservative cardiologist had me set to 70 lower lower and 120 upper. Even though I was 75 at the time (3yrs ago) I am in good shape and both limits were a problem. It is not only the limit, but the way the pacer enforces it. When you exceed the limit it starts skipping beats since it has no way to gracefully slow your heart. Also my resting HR was down around 58-60 so the lower limit would kick in when I relaxed. To make matters worse the rate response was turned on so it was conflicting with my own natural atrial pacing.
So after being put off by the cardiologist nurse several times I sent him a letter and requested an office checkup. I said that based upon my condition I wanted the lower limit set to 55 and the upper to 140 bpm. Also the rate response turned off. At the office visit he reluctantly let the Medtronic rep set the pacer to my specifications, but said I would be back in a week because of the problems it would cause me.
Instead, I felt great. At the next visit I had the upper limit upped to 150. I don't go there much, but I don't want the darned thing in my way. Last summer I hiked at 13,000 ft in Colorado with no problems.
My suggestion is to ask why the limit is so low and see if you can't have it raised in increments. Also ask if the rate response is on and try to have it turned off. I would think 125 or 130 would be a good starting point. Also, ask for a printout of your pre and post readings at the next checkup. Some of us here can tell you what the various things mean. I'm an electronic engineer and I downloaded the complete technical manual for my Medtronics. That's how I learned about the available settings.

frank

EVERYONE IS DIFFERENT

by peter - 2008-05-18 03:05:45

Its very odd but I have talked personally to a number of pacemaker patients about this question. All I have been able to conclude is that every individual is different. Some can tolerate and feel or think they are more able after having the upper limit raised and others do not benefit or find they are worse off. I was left at a permanent 70 bpm for a week and then the motion sensor was turned on allowing a maximum beat of 120. I found it made no difference. But I feel ok. I met someone last year who found he was worse off and his pacemaker was set at a permanent 70bpm with the motion detector turned off. Cheers Peter

ablation

by ElectricFrank - 2008-05-18 06:05:38

Actually the AV ablation doesn't disconnect your heart from your brain. It disconnects the ventricles from the atrium. Information from the brain plus a lot of other sources come together in our natural pacemaker to set our HR at any point in time. The result is that the atrium is paced at the resulting HR. The pacing signal then progresses down the AV bundle and after an appropriate delay to allow the ventricles to fill, fires the big pump (ventricles).
If something affects this system it can cause all sorts of problems. The 2 most common dysfunctions are an irritated area or a failure to conduct reliably. An irritated area causes erratic or rapid beats. If the location is above or in the atrium it affects it then the bogus beats are transmitted on the the ventricles. If the location is between the atrium and ventricles then the atrial beat is normal, but the ventricles aren't right.
In either of the cases above if the problem is a loss of conduction then instead of erratic or fast beats the result is a loss of ventricular control and it slows to a "fail safe" rate of around 35-45 BPM.
Since you had an AV ablation for a high ventricular rate your problem was a damaged or irritated area in the AV bundle. The ablation attempts to destroy the tissue in this area stopping the rapid stimulation of the ventricles and in the process often creates an AV block. The pacemaker has a lead in the atrium to sense a contraction, waits an appropriate time interval, and then stimulates the ventricles. The result is hopefully normal HR control since the atrium is being paced normally.
Hopes this helps understand what is going on.
With your damaged ventricles I would change a bit of what I had said earlier. My suggestion would be to have your upper rate set to whatever the EP feels is appropriate for your current condition. Then try to stay below that rate so that the uncomfortable feelings of hitting are avoided. It might help to get a HR monitor if you need it to moderate your exercise. Give your heart a chance to heal. With your motivation and drive I would put my bets on a good outcome.

Good luck,

frank

Thanks....

by Bionic Beat - 2008-05-19 11:05:45

I have a very rapid AFib that has become chronic.

Yes, you're correct, it's only the ventricles that aren't receiving a signal from the brain.

The atrium are just a jiggling away, while the ventricles are being paced.

I really didn't want to discuss much, just wanted my life back asap.

Now that it's over, I'll ask the questions....just don't like being such a slow-poke! lol

Life is good, embrace it. Bionic Beat


You know you're wired when...

“Batteries not included” takes on a new meaning.

Member Quotes

I just want to share about the quality of life after my pacemaker, and hopefully increase awareness that lifestyles do not have to be drastically modified just because we are pacemaker recipients.