To pacemaker, or not to pacemaker, that is the question

October 14th, 2012 by Carrie, the Just Mildly Medicated gal

You may have just found me and need to catch up on things. If so, a quick recap- I have dysautonomia and it sucks. I have two out of four doctors who would like to put a pacemaker and Implantable Cardioverter Defibrillator in me, one who thinks it won’t help and a fourth who I haven’t met yet… and I listened to Phil Collins a lot last month.

The beginning of my pacemaker adventure and how Phil Collin’s played a big part, alright it was admittedly a small part, okay so it was more like my mind wandered…

30 things about my life with dysautonomia, geesh catch up would ya?!

Par for the course when you have something rarely diagnosed, doctors either ignore you or tend to give you a lot of attention while they try to figure you out. When they can’t figure you out they tend to break up with you  or stop making eye contact in which you have to break up with them. It seems very emotional but with no real connection, lots of oral given and received and never dinner or flowers.

Oh maybe I could start a Fantasy Football league only with physicians… I like it, Fantasy Physicians. All of the people I network with who have invisible illnesses can come up with their dream team of doctors and we will keep track of who actually knows how to treat us and score accordingly. Okay I digress…

Neurologist says: “Your brain is beautiful, EEG looks wonderful, however I couldn’t help but notice the ECG was crazy the whole time. It was wild to watch. I am calling your cardiologist this afternoon. I would say you might need a pacemaker and defibrillator for a quality of life improvement.”

Yes, he said my brain was beautiful. My heart is crazy, not my brain. TOLD YOU I WASN’T CRAZY… sorry didn’t mean to get all caps lock on that. I just got all excited…


Dysautonomia specialist says: “Your stress test showing non sustained ventricular tachycardia after 3 minutes in conjunction with your heart rate ranging from 50 to 180 when you’re sleeping concerns me. Have you been approached about a pacemaker and defibrillator?”

There are 3 categories you can fall into when being evaluated. You can be accepted, controversial, or not warranted. The two above docs put me in controversial and yes a very immature part of me was all ‘oh yeah I am so controversial’. The cardiologist, upon hearing these opinions and having already reviewed my case, orders ANOTHER 30 days of monitoring. Okay, I can be agreeable… this is a big deal and he is just wants to be sure. So I wear the godforsaken monitor another 30 days and turn it in.

After all of that I get a phone call from his nurse who relays to me that at this time I am ‘not warranted’. I did a small happy dance. I keep it small as standing up happy dances before meds can sometimes make me a little woozy. I tried to let the pacemaker idea go but it did stick in the back of my mind.

Yeah I knew it would never be that easy. Last Thursday I get a phone call from a nurse at the cardiologists’ office and they have another electrophysiology (EP) cardiologist who would like to see me. No joke, the nurse calls to let me know an appointment person will be contacting me “in the next few business days” to fit me in “as soon as possible”. It’s freaking THURSDAY AFTERNOON, you know I am not going to hear from them for another week! So now I am left to wonder what does this guy or gal think. Do I need the ole ticker kick starter… or did he or she see the word Dysautonomia and want me to come in so he or she can have me lay down and stand up while taking my BP and HR just so he or she can comment on how interesting I am.

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2 Responses

  1. Karen says:

    Just found you and am all caught up!

    I can’t imagine the roller coaster ride you are on.

    You seem to be able to keep a sense of humor while going through all this craziness, and I’m in awe of that, truly.

    (Oh, and nice underwear!)

    Be well!

  2. I guess we all have our own roller coaster. Thanks on the underwear, really waiting for the trend to pick up!

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