Where to start? Where the Electrophysiologist in El Paso told us, unequivocally, that the June 10 ablation had failed and the *only* recourse was to go to Austin to see the Number One Guy.
Then there was a lot of bullshit with the Number One Guy’s office, detailed here previously. Go find it, I’m not up to linking.
Then the NOG’s office called Monday. I mentioned the following: Very very anxious, taking Xanax three times a day. Also very worried that I wasn’t feeling the PVCs. “Oh, hon, don’t worry, he’ll be able to induce them.”
I set down the biggest burden I was then carrying.
We go to Austin. Nine hour drive. Check into our hotel (special medical rate of $109 a night, expected 5 night stay). The next morning at the NOG’s office, the EKG shows that I am not having any PVCs.
This was my WORST FEAR. NOG is vague. It goes like this:
NOG’s PA on the phone last week: So, how’re ya doing?
Me: Well, anxiety’s pretty high, actually.
PA: shore, shore, hon, that’s to be expected.
Me: yeah, taking a lotta xanax, and actually, and I’m sure this is anxiety speaking, and I know you are busy, but, I just have this paranoid fear that I’m not having the PVCs as much or at all? I should probably just take more xanax, right?
PA: Oh, don’t you worry, doctor will just induce that rhythm.
Me: (SO RELIEVED) oh, okay, great.
Fast forward to today (a 9 hour drive and $109 a night hotel later):
ONE SECOND before Doc walks in I say to Husband, “Let him not say I am not having PVCs or that it’s up to me what to do”
Doc with not much warmth: So, you aren’t having any PVCs. [a bunch more other horseshit] It’s basically up to you. So, let’s get you pre-registered.
Nurse: blah blah blah
Chuck: (in the hallway on the phone with my mother agreeing that this seems like a bad idea)
Me: (babbling emotional diarrhea) so don’t know what to do, thinking of just bagging the whole thing, feel like an asshole…
Nurse: are you taking anything for anxiety?
Me: Xanax, 3 times a day.
Nurse: that can suppress PVCs. Let me call anesthesia AND pharmacy to confirm that. Yep, that’s a fact!
Me: can you ask my husband to come back in here?
And that’s how we spent a day in Austin walking uphill in 100 degree (plus humidity) heat, drinking coffee with wine, carrying a 1963 Enid Collins purse that caused people to stop and worship, sobbing about being an asshole, and planning to give a hospital over $3000 the next day for a heart that might not perform. Modern medicine.
It is medically very dangerous to abruptly stop Xanax. So I was up all night that night, sleeping about 1.5 hours. By the time we reached the hospital I was manic, clenching my teeth, paranoid, and crying. We were scheduled for a 7:30 go. Things they didn’t tell me: any emergent case coming into the hospital would be put ahead of me.
They didn’t take me back until around 11:30.
Once in the lab, which is a huge room with a HUGE screen, there are a lot of people, and I’m naked (I ultimately get a blanket). they are putting a million goddamned sticky connectors on me; some huge, many small. they are exposing one boob, then the next boob, then my ass, etc, etc. Finally I am strapped down into an immobilizing thing–arms packed in foam and tied down, legs the same, head/neck the same, and an oxygen mask strapped to my face. Then they all walk away, and the board starts showing all these stats.
They give me a drug to slow my heart rate to induce PVCs. It takes forever, I can’t move my head. I don’t know what the board things mean. I keep feeling out of body (Xanax withdrawal, exhaustion, stress). My blood pressure is 157/109, higher than I’ve ever seen it. I feel like I need to pee and it’s freaking me out. They won’t give me anything to calm me down. (I was obsessed that my crotch smelled bad, and they’d all smell it and talk about me being disgusting). So it takes forever to slow the heart rate, and people wander in and out of the room, and say things like, “Nothing happening yet?” Um, I don’t know. But thanks for making me feel like I’m not performing.
After awhile they say they are going to try speeding my heart up. I react to that drug really fast, and my heart goes up to 165 in about 10 or 15 minutes. It felt like I was going to watch my heart burst from my chest. Finally, the cocksucker expert doctor comes out and says, “We’re not seeing anything, so there’s nothing else to do.” Twenty more minutes are spent unhooking me, naked, in a big room with people still coming in and out. Then off to recovery, but they don’t go tell my husbnd anything. I wait in recovery for about 45 minutes before asking them to get him. He finally arrives, thinking it was a full procedure, so I have to explain to him that no, it was a negative study.
THEN, my (male) nurse, seems to feel that my being angry and frustrated means he needs to stay in there and mansplain PVCs , and “my own theory” and some tale of his kid cutting his finger camping and I am thinking, “GET OUT. GET OUT. We haven’t even talked about this, GET OUT.” Finally we are released and I cry for the next hour and a half. All the way back to the hotel. Sitting on the couch in the room. The spouse hands me a xanax and a glass of wine and then steers me to bed. I cry until I sleep for about 2 hours. Then he gets Korean food and we watch the (lame) Opening Ceremonies and crawl back into bed before the sun goes down.
Then we drive home, nine long hours, and fifteen minutes after I get home, I have an aura. Then another one. Now, nothing has gone numb and no headache, but…..hard to trust.
Maybe my heart was fixed in June and the El Paso doc jumped the fucking gun and cost me a LOT. A LOT.
Maybe the Xanax was still affecting it and now it will come back, sometime, don’t know when.
I have to find a way to safely go off the Xanax.
I really, now, have no medical team.
Everything else seems fucked up.
I have very, very little coping skills left.