You: “So what have you been doing lately?”
Me: “Lots of writing, pledged 100 miles of pedaling for Invisible Illness Awareness Week and that’s going really well, oh and I just finished up a 30 day evaluation for a potential pacemaker and Implantable Cardioverter Defibrillator.”
Okay so no I don’t carry on that conversation stopper too often but some of you have heard it. Now that people know what is happening to me these conversations are happening more often and they are becoming more real somehow. It’s a hard reality but I do believe it is emotionally healthy to be able to discuss these things instead of holding them in and worrying alone.
Being a 36 year old wife and mother of four and to find out you have something wrong with you is a little unexpected. It took about 6 months and 3 doctors before I really believed something was really wrong, I mean I knew I wasn’t doing well but I had a hard time with hearing I had a rarely diagnosed condition. I mean it’s rare so therefore someone else should have it right? Dysautonomia didn’t really roll off the tongue and it didn’t help that the local medical world thought I was “interesting” and hearing multiple doctors say they are familiar “but have never treated anyone with dysautonomia” wasn’t exactly comforting.
I heard doctors come together in the room with me and say things to each other like “maybe a ventricular ablation would be the best route” and “pacemaker defibrillator combo would control brady and tachy” but I thought they had to be over exaggerating and considering they rudely acted as if I wasn’t right there I did the same right back to them. If I ignore it then it clearly wasn’t said, maybe they were talking about the other lady in the next room. I took the meds they gave me and went to the next specialist, and no longer see that first cardiac team. It was a hard break up but I think they got over me. After hearing this whole ablation, pacemaker and defibrillator talk a few times with them I thought it was at least something in my future, as in 15 years maybe.
My new team of doctors, whom I trust with my life and that is a good way to feel about your doctors, brought up Implantable Cardioverter Defibrillator (ICD) and possible pacemaker combo my eyes welled up with tears. Okay here is where you have to know me, I can cry on at the drop of a dime if I want to. I am really good with dramatic effect. When I do not want to cry and it happens I am humiliated. I would rather poke myself in the eye with a pencil and say “I am sorry I seem to have something in my eye” then cry in front of anyone. The real pisser here is there were no pencils around that I could find.
The first step is apparently calling everyone. My Neurologist, Dysautonomia specialist and Cardiologist are all in cahoots at this point. The ironic part is they hook me up to an event monitor. Now I have been able to hide these pretty well but seriously I have been monitored more often than not over the last year, a gal only has so many shirts that hide 3 sticky tabs and wires, not to mention the pager style recorder. I can’t help but feel like at this point we need to just decide. The fact is though there are medical guidelines and we need to be certain I fit them and that this is the best route for me. They’ll look at my year of on again off again monitoring and decide if I fall into accepted, controversial, or the not warranted category. I am putting my money on controversial, I mean come on it’s the only fun category being offered.
The fact that the ICD was first used in humans in 1980 and approved by the FDA in 1985 was emotional to hear in itself. I mean how can I be old enough to need something made (in my mind) for an old person’s heart that was approved when I was 10. Let’s get real here, we are talking about a medical breakthrough for the heart approved when I was listening to Madonna whisper moan about feeling like a virgin and I had no real idea what she was rolling around the floor for. Seriously, I am still trying to decode Phil Collins Sussudio and I am still crushing on A Ha while they were all animated and running around trying to Take On Me. I wanted to stand up and say “I am really sorry fellas but I am way too young for this”. Instead I sat still and focused on sucking that watery mess back into my eye balls.
So the deal is IF this is even the route we go; the Defibrillator will have an antitachycardia pacing that will have a preset number of rapid fire pulses (fire pulses, because this sounds like something you want in your heart) these pulses, in all hopes, will stop the ventricular tachycardia when it happens. If it does not the ICD preforms its own cardioversion, which sounds like a lot of stuff happening to a heart just having a hard time figuring out how to beat appropriately. The pacemaker does pretty much the same but opposite, when my heart rate drops too low it will send an electrode to get things going again. At this point I am wondering if I am going to be walking around jumping from all this internal shock therapy and thinking with my awesome cane and internal shock therapy I will be able to avoid unwanted conversation with people for the rest of my life, note to self on possible bright side.
As you can tell in my mind I have already gone to a different place. It shifts a tad to a self-centered place, a place where I am still struggling to be a hot mom, for godsake I have a babysitter for this appointment to talk about pacemakers. This just cannot be happening right now. I’d rather be at Pilates, or reading or writing or ANYTHING. And what the hell is Phil singing about in Sussudio. I actually come close to asking the doctor, I mean he obviously knows everything, then decide there is little chance he is cool enough to really know and then I might get a referral to a whole different doctor.
So now I sit and wait, knowing even if we do this it does not cure my Dysautonomia but will help regulate my heart rate so that I am more able to do things other people my age do without much thought. Like walking the dog or going through every aisle at the grocery store, I know I am really thinking big here. I will still deal with my big obstacles of Chronic Fatigue and Orthostatic Intolerance not to mention convulsions and pre syncope. I know right, pretty sexy. But I think the biggest bit of information I can pass on is that I googled an interview Phil Collins gave and the Sussudio lyrics are based on this schoolboy crush on this girl but he doesn’t really know her so he calls her Sussudio. I personally hope everyone who pined over someone plays this song today and sings it really loud. Life is fun that way.