Hi friends. So at this point you’ve probably realized that this site isn’t just about food. It’s my lil’ hello to the world. Silly as it may seem, I get great joy out of writing out into the great unknown and hoping that I made somebody smile or laugh at some point. A lot of time though, it’s a very selfish act, it’s me telling you what I did, what I cooked, how I did it, all because I think it’s important that you know. It may not be news-worthy, but it’s something I feel like I have to share.
Today’s post is not about food, and it may not make you smile. I am breaking my promise from last post- the promise that I would be “cooking up a storm” over the weekend- but it is not my fault. I have a very good excuse and it’s about time I tell you all about it. I have what is called Congenital Complete Heart Block, aka my heart is literally permanently broken, and I’m not talking in the Toni Braxton sense.
Now, are you ready for an anatomy lesson? If you’re squeamish I’ll keep it simple, because trust me, I can’t handle this stuff either, yuck. Everyone has a nerve in their heart called a sinus or SA node. It’s also known as the natural pacemaker. The problem with heart block is that mine does not work. I was born without a natural pacemaker, ergo, when I was a very young child I had one implanted. Sounds fancy, huh? It is, and the hardware is pretty shiny. It’s a very small metal device nestled into my chest now, and connected with two wires (through the veins, eep, I only learned that yesterday) to my heart.
Until this point it’s been a relatively forgettable condition. I don’t feel different than anyone, I was never a sick child, I just had an additional annual check-up at the cardiologist. I had it changed when I was in high school, because though the technology today is pretty bad-ass, it still needs to be replaced like a regular battery. It would be much easier if I could just plug into the wall overnight. Anyway, I digress. So, things are pretty normal for me, I have to get patted down at the airport and I have a small scar below my left collarbone that’s quite a conversation piece, but otherwise, I usually forget it’s there.
Except when I can’t, at moments like this when I am punched in the face with reality and it’s scares me. At this very moment I am watching big fluffy snowflakes come down outside my hospital room window in Chinatown. This is where I have spent most of my holiday weekend, and where I will remain for the rest of the week most likely. Pour quoi? Parce que, le ticker is having a diva moment and not performing. (Ok so I may have lied about the not-smiling part, I told Clare yesterday if I lose my humor you know it’s a serious emergency and call the doctor STAT.)
One of those fun wires that connects the actual pacemaker device to my heart has decided in recent weeks to stop working. I noticed something off a couple of weeks ago, just sitting at my desk, minding my business, I kept getting waves of dizziness and being light-headed. I saw stars every time I stood up to walk to the printer. I thought to myself, “I’m probably just fighting off a virus, I’ll go home and sleep it off.” So I did, and things were a bit better after that. Fast forward two weeks later, I’m exhausted all the time, still dizzy and lightheaded so I went to the doctor. They didn’t like what was on the monitor so they sent me home with an at-home monitoring device. I had the thing on for maybe 2 hours, and got two phone calls from the Attendings on-call at Tufts, and the decision was made by the powers that be that I be monitored in the hospital, in case I actually do ever pass out, or if my natural heart rate doesn’t kick in fast enough.
It’s really hard to explain how this all feels. I know you can appreciate the dizziness, the about-t0-faint feeling, but the actual heart fluttering or waiting for it to beat is the strangest thing- strange to have and even stranger to describe. You lucky folks and your regular heartbeats. (Also disturbing, these interns & residents I’m pretty sure are barely my age, it’s so weird.)
I’m here now, all hooked up and being waited on. It really wasn’t a bad Sunday in the grand scheme of things. Someone brought me breakfast in bed, I got to read my entire 600 page Vogue, my Mom & Aunt brought me lunch, my girlfriends from grad school visited and those dolls brought me a box of pastries since I missed out on brunch, I got flowers delivered, and had an excuse to laze around all day watching movies. (I have Scrabble on-call if things get really desperate.) I don’t know what I was more upset about, being in the hospital, or not being able to make Clare’s birthday cupcakes for her party last night. I was so much looking forward to that. Boo.
The whole thing is a total bummer. At first I was only thinking about the immediate future- you know, no big deal, put in a new wire, badda-bing, badda-boom, I go home, fixed and that’s that. Whelp. This is why I’m not a doctor and I don’t play one on TV. It’s not that simple. Because I am only at the wee age of 27 I’ve got to live with this thing longer than most. (I’m bringing the average age way down in this department.) The doctors don’t want to just keep putting more stuff in because, in simple terms, I’m running out of real estate over on my left shoulder. There’s not a whole lot of room left, and this probably won’t be the only time this kind of thing will happen, unfortunately.
This is where reality socked me in the face yesterday. I had a very lovely and very wonderful doctor explain this all to me, all the while I’m trying not to cry, and keep looking at my Mom who also looks like she’s about to cry. It’s not an easy fix, and one of the things they can do is very dangerous and is a bigger deal than a regular device replacement. They have to call in the big guns for back-up, just in case, God forbid, anything does go wrong, it could be really bad in there. Not something you really want to be faced with at 9 on a Sunday morning. And, at the end of the day, it is my decision- depending on a few factors of course- but ultimately it will be my decision and mine alone as to what I want done. It’s a scary prospect, and it’s lonely. That said, I’m so lucky to have the most amazing network of family and friends who have been so supportive and wonderful this weekend.
So yes, no exciting kitchen tales or goodies. And there won’t be for awhile. The last time I had all this jazz worked on my shoulder was out of commission for a few weeks, I didn’t do a whole lot. I’ll stay in touch though with other updates, otherwise, La Cucina for now is closed and I’m relying on take-out. xo, AT