Pacing-Induced Cardiomyopathy

Google

by Peg541 - 2012-11-10 08:11:54

You need to sit down with the Cardiologist and then spend some time with Dr. Google. Bring your results to the MD.

Do your research and speak to your physician. On my short Google foray into this I see there is a solution. But look around first and ask the MD.
Good luck.

follow-up

by goguryo - 2012-11-10 09:11:13

by "doc", I meant my cardiologist and as i'm in Korea the communication isn't so clear.
BTW - I'm 43 and just had twins this summer -- really need to get healthy to take care of them... So i'm willing to fly to the states to figure this out (don't know if they can provide better results). Can anyone recommend a specialist in this area (I'm originally from the Twin Cities so Mayo Clinic comes to mind, and i have a Medtronic pacemaker so...)?

second opinion

by Tracey_E - 2012-11-10 09:11:36

First of all, if you are in 3rd degree block that means that the signal doesn't ever get from the atria to the ventricles so it's expected that you'd pace 100% of the time. Either you don't have 3rd degree block, or you never paced only a few minutes at a time. 2nd degree block is intermittent 3rd degree block or constant partial block, 1st degree is occasional block, both of which are generally only treated if symptomatic. Most of us with 3rd degree block pace 100% of the time, that's perfectly normal. Pacer induced myopathy generally takes years and years to develop. I've had a pm for 3rd degree block for almost 20 years now and have no sign of it, this is common.

Next, 60% function or 60% ejection fraction? Because 60% EF is a good number. EF is usually what they determine from the echo.

Are you having trouble all the time or only on exertion? If it's on exertion, it's likely your settings need adjusted. The ones they send us home with are generally for the average pm patient, who is likely a lot older and more sedentary than you. The first thing to ask about is upper limit. They usually start it at 120-130. This means the pm will pace the ventricle up to only 120. So if you are running and your atrial rate is at 150, your hr will be only 120 and you will feel short of breath, limbs heavy, dizzy.

Ask them to put you on a treadmill while hooked up to the pm computer and watch what your heart does. If the upper limit is the problem, it should be pretty obvious and an easy fix.

If you truly do have myopathy, which I'm no professional but I truly doubt you developed it in this short a period of time, 3 lead pacemakers, or crt therapy, can offer a solution. It is a pm with a lead in each ventricle so it keeps the left and right ventricles in sync. But this is usually done when the EF drops very low, like under 20%.

Either your dr isn't very good at explaining things or he's not used to active patients. I would have a chat. I'd probably also seek another opinion. Not a cardiologist, get an electrophysiologist, a cardiologist that does pm's all day long and likely has other active patients.

Hope this helps! You are not the first to post here with this problem. Every other one I can think of found a solution with pm settings, turned out myopathy was not the problem, simply a dr not used to dealing with runners.

Mayo!

by Tracey_E - 2012-11-10 09:11:52

If you have access to Mayo, do it. Mayo and Clevelend Clinic are the best out there. But I really don't think your problem is all that serious so any good electrophysiologist should be able to get you feeling better.

Tracey

by goguryo - 2012-11-10 10:11:50

Sorry Tracey, i simplified - i had an intermittent 3rd degree block. sometimes it would be fine, sometimes only second degree. This is the terminology that the doctors used with me. Tested at 3rd degree in the ER, got a temp pacemaker, tested for a week, ran on the treadmill fine - then had problems as the heart-rate went down, etc. Finally, they decided i needed the permanent one.

60% function is what I said (EF 40%).

Only on exertion, but had a lingering cough since two weeks post-op so doc ordered the BMT blood test (this was high) and Echo.

we've already done a few adjustments, but the heart is getting worse. they decided that my longer delay was unnecessary as pacing went from 3-5% of the time to 100% of the time. Now settings are short delay, low of 45 and high of 165. haven't done any exercise as i have trouble getting up the stairs to our third floor apartment (its a walkup), so upper limit is not the issue. Also, they adjusted the rate at which the PM can increase to assist with rapid changes from rest to activity.

"If you truly do have myopathy, which I'm no professional but I truly doubt you developed it in this short a period of time." - The doc said that this is a rare case. He is not very good at explaining things as he is Korean and i am in Korea - he's using what English he has, but it is a rather difficult situation for all. They don't seem to have experienced many active patients (at least to my levels), but he is an electrophysiologist at the best hospital in the country here.

Do you have any idea what those PM setting adjustments involved?

On a side note, Tracey, I know you are trying to help, but i wonder if you realize that the tone of your "doubts" of the validity of my statements, is a bit... I'm just learning that I have another very serious and very sudden problem in the face of a young family that needs me, and you think i'm trying to lie about it... I really don't understand. In any case, i thank you for taking the time to answer me and your helpful advice.

I'm sorry!

by Tracey_E - 2012-11-10 11:11:31

I wasn't doubting anything you said, I was wondering if possibly the dr did not explain it well or if you misunderstood. They throw a lot of terms at us when things like this come up and it's easy to get confused, esp when you are dealing with a language barrier. I apologize for any misunderstanding.

Our official diagnosis can change depending on where we are. The ER will write something different than the internist who calls it something different from the cardiologist. Also, I have seen more than a handful of people here initially diagnosed with myopathy who in the end did not have it. Just because they're throwing the term around does not with 100% certainty mean that's actually what is going on. That was my point, not that you were making any of it up! :)

Settings, there are tons of them and I'm not good at terms or explaining them. Maybe ElectricFrank or PacemakerRep will chime in, they are better at it than me. I can only explain the ones I've had problems with because they were explained to me in detail.

They can adjust the delay, how long the heart is allowed to have a chance to beat on its own before the pm kicks in. They can adjust the strength of the pulse. The pm can help your rate go up on exertion if it doesn't go up on its own (rate response), and rr has a lot of sensitivity settings. There is a function to prevent sudden drops and keep the hr level during activity. Lots of things! If you are in and out of full block rather than in it all the time, then you really shouldn't be pacing 100% of the time. Maybe the delay is off, not giving the heart enough of a chance to beat on its own before kicking in?

When you try to go up the stairs, does your rate go up appropriately?

Another thought, did something happen to bring on the av block that you can pinpoint? Sometimes it's congenital and undiagnosed but if you are a runner it's unlikely you would not have noticed something was very off. If it was medication or an infection (most common causes of non-congenital av block), is it possible it did additional damage beyond the av block? A pm can cause damage to the heart, but it's generally over many many years, not several months.

If you are not able to function well in daily life and the drs where you are don't have answers, then it is probably worth a trip back home for another opinion,esp considering home is where one of the best clinics in the world is located. I hope you get answers soon.

AV-delay

by golden_snitch - 2012-11-10 12:11:07

Hi!

If you have intermittent blocks, but pace 100% of the time, then the AV-delay is programmed too shortly. AV-delay is the time the pacer gives the AV-node to pass an electrical signal coming from the atriums on to the ventricles. If this delay is very short, the pacer does not give the AV-node much time to perform its "duties", and so you end up being paced all the time. So, first thing I'd recommend is to ask the cardio for an AV-delay optimization.

May I ask what your pacer model is (manufacturer, name)? There are two manufacturers that have a special algorithm in some of their pacer models which helps to reduce ventricular pacing. Basically, instead of pacing you out of every single heart block that occurs, this special modus waits until it detects a certain number of heart blocks in a certain period of time. In my pacer this means for instance that out of 12 beats, 3 p-waves (signals from the atriums) have to be blocked by the AV-node, before my pacer starts pacing the ventricle. The Sorin Reply DR has this feature, and also Medtronic's Adapta. It significantly reduces ventricular pacing. Before my AV-node ablation, when I only had intermittent heart blocks I was pacing only about 2%-3% of the time (sometimes more, depending on my antiarrhythmic drugs) due to this special modus; while in DDDR mode with a programmed AV-delay I was pacing around 30%!

So, if you are still having intermittent heart blocks, you could also ask about a pacemaker with the special pacing mode I just explained. If neither AV-delay optimization, nor a different pacer help, you can still have a third lead put in to stimulate your left ventricle and thereby resynchronize your ventricles.

Best wishes
Inga

Think BIV and forget EF

by nofib - 2012-11-10 12:11:13

Hi goguryo,

First, as a fellow victim of pacer-induced cardiomyopathy, I am sorry for you. The fact is that it could have, and should have, been avoided. For years the cardiologists have known that 100% single pacing of the RV will often induce LV dilation and cardiomyopathy; yet, for some reason (insurance?) single RV pacing is still popular.

From a 2008 study which leads off with the sentence "Observational studies suggest that conventional right ventricular apical pacing may
have a deleterious effect on left ventricular function." you can see the following results:
"Results:
At 12 months, the mean left ventricular ejection fraction was significantly lower in
the right-ventricular-pacing group than in the biventricular-pacing group (54.8±9.1%
vs. 62.2±7.0%, P<0.001), with an absolute difference of 7.4 percentage points, whereas
the left ventricular end-systolic volume was significantly higher in the rightventricular-
pacing group than in the biventricular-pacing group (35.7±16.3 ml vs.
27.6±10.4 ml, P<0.001), with a relative difference between the groups in the change
from baseline of 25% (P<0.001). The deleterious effect of right ventricular apical
pacing occurred in prespecified subgroups, including patients with and patients
without preexisting left ventricular diastolic dysfunction."
see http://sbhci.org.br/wp-content/uploads/2010/12/ARTIGO-ORIGINAL5.pdf

So, at only twelve months, 25% more of those paced RV-only had experienced increased LV volume (dilation) than those BIV-paced

After eight years of RV-only pacing, increased my LV volume to the point where they were discussing (but I was rejecting) transplant; putting in a BIV PM had my LV reduced to normal volume in weeks. Of course, the scarring, stiffening, etc. of the LV had already occurred, so the CHF just progressed; but I was able to climb stairs again.

I think you should have some words with your cardio for giving you RV-only pacing. And BTW, if he dares to use the term "ejection fraction" pelt him with some cold bulgogis (love those bulgogis). : )

delay / BIV

by goguryo - 2012-11-11 09:11:12

The delay was initially set to allow my own pacing, which was good at the time, but within a couple of weeks it was up to 97% pacing and then after two months up to 99% so they reduced the delay to get closer to "natural" pacing rhythm. Why it deteriorated, i have no idea.
I'm the father of twins.
I have a Medronic Advisa DDDR - most of the bells and whistles turned off as my Atrium beats/responds on its own.
BIV - is it really helpful to do another surgery? - doc says this is only helpful in 1/3 of patients.

can anyone recommend an EP in MN?

PS - thanks all for your comments. They really help.

Similar symptoms, it was the settings on my pacer

by ArtJ - 2017-04-21 20:32:57

For others searching and finding this thread, I wish to add that I also had symptoms of shortness of breath on very moderate exercise immediately after my 5-week "don't lift anything" period (I have full block and a 2-lead pacer). My nurse EP (UNC Hospital in Chapel Hill,NC, great folks) had me fast-walk a couple hallway laps while monitoring me from her specialty-laptop linked to my pacer. She indeed found that, past 120 BPM I was getting only about 1 of every 2 beats my heart tried to make - no wonder I was winded. She found, as TracyE did, that the "standard" settings are for some 80-year-old couch potatoe; I am 63 and plenty active.  She did have to call the pacer tech to understand exactly what to tweak to get me to an effective "upper limit" of 150 BPM (which I later had them up to 160BPM after I began cardio exercise 30 min/day 5 days/week). Once that was done, my next fast-walk laps were done with no problems whatsoever, and she confirmed from her readings that I was pacing properly with my heart getting up to about 138BPM. To date, this setting has worked very well for me with regular cardio at average 125BPM for 30 min and occasional intervals up to 142BPM for a handful of seconds.

For goguryo (if he ever looks back at this thread he started, it was back in 2012 after all), I hope it all worked out for you buddy. I also left the hospital pacing at 0 for long periods (my full block was somewhat sporadic but when it hit it lasted for hours, so I needed the pacer) and was at 20% on my 2 week checkup. By the time my 90 day checkup came, I was pacing at 94%. I'm still trying to get some data from my mfgr so I can see if I am 100% all the time now or just some of the time, if you know what I mean.

It was very nice to find this website.