extremely confused...

hi! i keep getting on here for advice, so one one hand sorry to bug ya, but on the other, this site is a great resource and its a lifeline for me these days. so... here's the scoop:
had heart blocks, had a pacer put in coming up on 5 wks ago. found out last week i'm still having right bundle branch blocks. i had at least 3 of them today while at work. they knocked me down. im glad i have a job that isnt super strenuous, and my coworkers are super understanding.
now i've had my ep doc tell me that it's part of the healing process, which i don't believe. i know that i will always have chest pain. i have a pacemaker and wires holding my chest shut from open heart surgery at age 1. i've lived with that kind of pain my whole life. that's not uncommon.
so i called my pediatric cardiologist for a second opinion last wk. he was worse. he told me that sometimes medicine can't help and in my case i'm pretty much screwed, and that i just have to learn to live with the heart blocks.
that sounds soooo not right to me. doesn't repeated heart blocks over time cause structual damage to the heart? i already have a patch on one hole, another hole that's not patched and a leaky valve.
what i'm wondering is:
could the blocks be a symptom of something from another system other than cardiac? what other systems?
who should i see to ask?
do i really need to be going to the doc/ er everytime i know i'm having a heart block? as of right now i'm not going because no one knows what to do with me. my local er want to transfer to me the twin cities' heart hospital and they won't take me because they can't find a reason for it. call me crazy, but i thought that's what thier job was.. cardiac hospitial=figure out what's making the heart go woo hoo.
i'm soo confused. i've decided that i'm never seeing my pediatric cardiologist again, and the jury is out on the ep doc.
and if this isn't even realated to my heart, then i now have a pacemaker for nothing and obviously helps nothing.
cheese and rice.
can't things just be a litle bit simpler? just a little? not a lot. just a little.
please help!!!!
kristin

4 Comments

'HOLTER TEST" and Pacemaker test through the 'PACEMAKER PROGRAMMER'

by swetalvora - 2009-05-12 02:05:45


Hi,

While I empathise with your mental agony, I too don't understand what you are writing. I feel it is because of the wrong scientific vocab that you have somehow used as per your understanding.

What according to you does the 'block' mean?

I read somewhere that it knocked you down 3 times. Well, does that mean that you fainted 3 times?
If that so is the case please undergo a ' 24/48 Hour HOLTER TEST' immediately. That will record if there is a pacing capture failure anytime for some reason during the day .

Please get your pacemaker tested by a trained pacing company engineer (in presence of a trained Cardiologist/EP). It is done with a pacemaker programmer. They can optimise the pacemaker setting that suits you the best.

For heaven's sake stop trusting anybody except the trained cardiologist, EP or a trained company engineer for the pacemaker. All others (like your Paediatric specialist or any other general practioner) do not understand pacemakers and are likely to talk rubbish.

Wish you all the best,

SWETAL VORA

blocks

by Tracey_E - 2009-05-12 06:05:59

As Frank said, what they're telling you doesn't make sense and I'd definitely go for another opinion, probably a straight cardiologist rather than another ep because not all your problems are electrical (what ep's deal with). If your hr was slowing down, then you did need the pm.

You shouldn't really feel blocks, and now that you have the pm it's irrelevant if you have them or not because the pm works around it. I'm no doctor, but it sounds to me more like you're feeling the valve than anything electrical.

No, blocks don't cause damage to the heart over time. If left untreated, the low heart rate associated with the blocks can do damage to your other organs but the heart is structurally fine other than the short circuit. "Block" is a bit of a misnomer- it's an electrical signal that is blocked, it's not a plumbing (clogged arteries) or architectural (prolapse) problem.

Something strange

by ElectricFrank - 2009-05-12 12:05:27

The description you give doesn't make sense. I'm not saying that it is your fault, but rather they are giving you the run around.

For one thing a bundle branch block should be meaningless when you have a pacemaker. The pacer paces the ventricles directly bypassing the AV node and bundles completely.

frank

Welcome Swetal

by ElectricFrank - 2009-05-13 12:05:02

Welcome to the forum. We can use all the well informed technical types we can get. There is so much misinformation about pacers.

I am a biomedical engineer. After receiving a pacer for AV Block I downloaded the tech manual for my Medtronic and studied up on it. Also, designed my own wide band ECG that shows a lot more than the typical hospital one. I've pretty much been specifying the settings for my pacer and it is working great. As you said, the factory engineer is the only one that really understands the pacemaker. The cardiologist is a plumber.

Where I feel limited here on the forum is dealing with the more complicated sinus rhythm problems.

frank

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