Adjusting to the Pacemaker

Hmm

by robinclaire93 - 2016-09-21 17:45:18

I am 2 days out from getting my pacemaker put in, I'm 23 years old. I haven't got out of bed except to go to the bathroom and straight back to bed or I'll get dizzy staying up so long. I am getting headaches too, and I am having trouble breathing well. I have to take big deep breaths to be able to even breathe. I don't know what's going on with my body and yes it's very scary to deal with. So I know exactly how you feel. This is a life changing event, you need time to cope with what has happened, but you will be okay, just as I will as well. That's why we are here, to support each other in this journey!

sounds like

by Cabg Patch - 2016-09-21 18:28:41

Sounds to me as if they need to make some changes to your settings to meet your specific needs. Often they leave it on the factory settings and no humans live in a factory so... Document everything you are experiencing and ask the pacer tech about the settings of your device. Do Not Accept the old "It's working properly" That's a crap excuse and meaningless.

Cabg Patch is right

by Gotrhythm - 2016-09-22 15:00:52

I must echo Cabg. The settings on a PM are NOT one-size-fits-all, but unless a need is seen to change them, initially, most people's setting are those pre-programmed at the factory. But those settings suitable for the "average" patient might not be right for you.Your settings likely need adjustment.

In my case, the PM was actually interferring with my normal-for-me preventriclar contractions (PVC.) When an Electrophysiologist (an MD specializing in rhythm disorders) at Duke realized my ventricle didn't need pacing at all, the problem was solved with a simple change in the PM programming.

But before that happened I felt rotten, had chest pain, nausea, sometimes too weak to hold a book to read, and couldn't hang onto a thought for long enough to complete a sentence. But I had every heart test known to medecine and my pacemaker was "working fine." My cardio wrote me off as a nut job.

You need an advocate, friend or family who will go with you to every appointment, stand up for you, and insist that you be taken seriously. Ask that person to come to the Pacemaker Club too and read the postings.

Finally, having problems with a pacemaker IS rare. If you don't get help from your cardio, go to a major teaching hospital where they may have seen hundreds of conditions like yours while your doc hasn't seen any.

Good luck. Let us know how you get along.

thanks for your comments on adjusting to the Pacemaker

by blessedgrammy - 2016-09-26 20:40:45

All comments were so helpful. Especially "Got rythmn"

My Cardiologist is not taking me serious. he says my heart would not cause nausea. He did order an echocardiagram. I don't know if it will help show my concerns, but I am hopeful.  I live in a rural area so to see an arryrthmias specialist is a 2 hour drive one way, but I wiil do it if this isn't taken care of.  My heart beats weakly and haphazardly most of the time.