Confused

Hi I had a biventricular defibrillator implanted on March 6, 2014. They removed the little pacemaker and replaced it with this lovely device to keep me going. All is going pretty well, my EF is up from 35 to 40. My question is this..I am pacing 100% for the bottom of the heart which is where I was told all the problems are due to a scar on the heart muscle most likely caused by my lovely disease called Sarcoidosis.
I also have complete cardiac bloc and left bundle branch. Had a crazy incident yesterday the alarm on the monitor went off, nothing wrong with me but they sent me to ER anyway...such fun! So the St. Jude tech says, nope all is good pacing at 100 % ventricularly and 31% up top....???? I was like what? NO one has ever told me I was pacing on top also...he says oh, no big deal don't worry its normal. Ok, now I am worried, and confused if its so normal why in 2 yrs is this the first time anyone has ever mentioned it? I am gong to Doc in 2 weeks again but would so appreciate any info from anyone who has any idea what this means. Thank you in advance

Debbie

2 Comments

Have you ever noticed that....

by donr - 2014-06-08 08:06:35

....medics usually don't volunteer information?

The offhand comment by the St Jude guy is not common.

You've had your PM for nearly 2 yrs. Have you EVER asked for a copy of the download report so that you could see for yourself what was happening & ask questions? It does not sound like it. Your pacing % are right there on the first or second page in bold type.

Generally speaking, medical personnel do not mention any more than THEY THINK the patient wants to know or can handle - resulting in many surprises like the one you just experienced.

I cannot say what is normal for a person with your problems, but when you see your cardio in two weeks, you must be prepared to sit down w/ him/her and quietly & persistently have him/her explain your entire history of pacing % to you. It's stored in all the downloads they have made.

I do not know if you have run into "White coat arrogance," where the Dr assumes that you are not sophisticated or knowledgeable enough to understand what is going on - or - an assumption that you are "Just another hysterical woman." Either way, you get short shrift on information.

The only way to find out if you fall into these categories is to gently force the issue by asking for the answers you need/want. If you cannot get them - find another Cardio!

OOOOOPS! Let me give you another category. Perhaps what is happening to you is so normal that the cardio didn't think it worth mentioning. That is a distinct possibility. Remember that the Cardio does know a lot more than you do & it may be an innocent omission. Again, the only way to find out is to ASK. I ask a lot of questions (I MEAN a LOT) but still have run into this situation, so do not be surprised if this turns out to be the case.

Donr

Thanks

by debj665 - 2014-06-13 04:06:44

Thanks for the response, and that is the most frustrating of all, I ask about everything all the time, I want to know what pill does what, I get copies of blood work all the time. Everytime my pacing percentage increased they said oh you're fine and I was like well if I am fine why does it keep going up?! So, I changed cardiologist and than alot of stuff started happening and they have helped me. So when this tech blurted this out, I was like oh hell no....not again I hope this guy has not held back on me like the first doc....I feel like I am dealing with a mechanic...lol I am already armed with a whole bunch of questions and this doc knows to be ready and sit for the 15 minute visit he charges my insurance for!

Thanks
Deb

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