Yep.
You probably already guessed it from the title of this post.
Penelope the Pacemaker is heading for an early retirement.
If by early, I mean REALLY early.
About 8 YEARS early.
To call this unexpected is somewhat misleading. It has been a possibility for the past 7 months, but one I really, madly, desperately wanted to avoid.
Desperately wanted to avoid to the tune of weekly infusions to increase my blood volume, daily electrolyte tablets, constant exercises to push the blood out of my legs, and salting every meal I ate. The robot hanging out on my heart had to be set so high during the day that it would have been impossible to sleep…so my doctor added a “sleep setting” from 10 PM to 6 AM. Want to go to bed at 9:30? Denied. Still asleep at 6 AM? You’re about to experience the feeling of an actual hummingbird inside your chest by 6:02. I was, quite literally, a larger than life alarm clock.
Despite all of that, I couldn’t get through my daughter’s class at The Little Gym without staggering to hold the wall or grabbing the toddler-sized balance beam to keep from collapsing into a passed-out pile.
(Not exactly the best way to make mom friends.)
The aforementioned list of surgery avoidance techniques was going quite well...until it wasn’t.
In late December I found myself needing to sit down and rest at the top of a flight of stairs. If I was sitting on the floor with my daughter and turned to grab a book, I started to pass out almost instantly. Halfway through a dog walk, as I was pushing the stroller up a hill, I’d be so tired that the thought of sitting down in the middle of the path to take a siesta actually occurred to me…but ya know, dog and toddler in tow. This wasn’t all the time - I’d have days where it wasn’t a problem at all…but also days where I was avoiding a full syncable episode 15-20 times a day. I’m no expert, but I’m pretty confident you aren’t supposed to spend the day trying to avoid melting into the furniture. Gradually, the days where it wasn’t a problem became fewer and farther between.
Now, yes, when it’s all typed out, I will admit the writing was on the wall. BUT…in my defense, it’s not always that crystal clear. You know what causes fatigue and heart rate changes? Thyroid disease. Digestive disorders. Autoimmune disease. You know what can cause dizziness? Sinus congestion. Autoimmune disease. Thyroid disease. You know what can cause insane fatigue? A TODDLER.
You see my point…
I did finally get myself to the cardiologist. He hooked me up to the computer so he could take a look and…silence.
Clicking of the mouse.
More silence.
Few more clicks.
Then, the phrase.
You know the one.
The phrase which is, coincidentally, the title of my future autobiography:
“Well, I’ve never seen THAT before.”
Stupendous.
Friends, my pacemaker did the literal ONLY thing it’s designed to never, ever do.
It reset.
Erased all of the data.
Went to the default settings.
And turned off the closed loop stimulation, which is why I have the pacemaker in the first place.
I was being paced 30% of the time. For the past 5+ years, I’ve paced at least 85% of the time.
I’d like to formally apologize to my 2-months-ago self for calling you a wimp mid-dog walk.
My doctor had never seen this before.
(Shocking, I know.)
He asked if I had been hanging out in a data center, or near an exceptionally large magnet.
Nope.
He made his best guess on my settings, and told me to come back in a week. I researched my face off for that week, trying to figure out what I may have gone too close to that would have caused such havoc. He said it would have been something equivalent to 200+ computers…seems like a good time to point out that I work from home, stay home with my toddler full time, and eat about 3 things, so I’m not exactly galavanting around the globe on the regular. I surveyed my friends for ideas, poured over the internet searching for everything from local business construction to lawsuits for faulty devices, and came up with nothing. I called facilities where I go often and completely perplexed (and overwhelmed) 99.9% of the managers when I asked questions about electric conduction and data centers on site. Again - nothing.
A week later, when he interrogated my pacemaker the “lead failure” error code appeared on the screen. The battery life had also decreased by 2 YEARS in a week.
More silence.
More mouse clicks.
“Huh.”
So my doctor did what we all do when we are facing technological difficulties - he called tech support….who was unsure, so they called the company.
In a nutshell - the smartest man I know called tech support, who called their tech support.
When the company said they “thought they had seen this once before” even my doctor said that wasn’t very comforting.
(Sidenote: I’m still not sure if knowing my doctor was as perplexed as I was is more or less reassuring.)
After much back and forth between all parties, and approximately 7 million stickers placed all over the exam room in an attempt to quiet my pint-sized sidekick, the team figured out how to override the setting that was making my pacemaker go to default mode in the first place.
Why was it defaulting?
No one knew.
Why did it turn off in the first place?
Unsure.
Was there actually a lead failure? Was the battery actually dying at a rate of 2 years per week?
Most likely not to the former…possibly to the latter.
Let me just say that absolutely nothing makes you feel more like a robot than the sight of two men talking on speaker phone, hovering over a screen…that happens to be dictating every move of the second most important organ in your body.
I’m pretty confident I would have fit in well with the Jetsons.
When my doctor sent me off this time, he asked me to come back in a month, as that would give him enough data to know if there was actually a lead failure and to see if we could figure out why all of this was happening - with the knowledge that Penelope was no longer able to just turn herself off.
It was a long month.
It wasn’t terrible, but it wasn’t good, and deep down through all of this, I just knew.
When I went back a month later and he looked at my stats, I think we both knew.
Prior to all of this drama, my atrium paced about 85% of the time and the ventricle only 5-8% of the time. In the past month, my atrium paced 97% of the time and my ventricle had shot up to a whopping 35%.
My literal ride-or-die since 2014, Penelope just couldn’t keep up anymore.
No one knows if the device is faulty, or my needs just outgrew my pacemaker’s abilities. Possibly a little bit of both, but most likely the latter. No one knows what event caused this cardiological cacophony. Like most things in my medical life, the quest for WHY is a dead end, that while infinitely frustrating, is a total energy vampire.
It does not serve me to put all of my effort into searching for the unattainable.
In a few weeks, at Penelope’s “retirement ceremony” I’ll switch from a Toyota to a Tesla. The procedure is literally called a “pacemaker upgrade.” Right now I have a two-line pacemaker with closed-loop simulation protocol, but my upgrade will be a fancy-schmancy three-line pacemaker that enables both ventricles to be stimulated at the same time, pumping more blood around my body with less sloshing back and forth within my heart. It is, for my medical friends, a Biotronik Cardiac Resynchronization Therapy Biventricular Pacemaker.
So fancy.
And yes, I’m bitter that yet again, my doctor won’t let me bedazzle it before implantation. Lame.
(How cool would my X-rays be?!?!)
It’s easy for me to joke - it is and has always been, my coping mechanism for life.
I’m joking, but I’m also crushed. And even I am having a hard time laughing it off this time.
Is this major open heart surgery? It is not.
Does it affect everything? It does. Much more than ever before when I have marched into surgery after surgery like it was just another day at the office.
In 2014 I was barely working, and spent most of my time alone, focused on my health.
Now I have two jobs, a toddler and a “doggler,” and I make it my personal mission to be as normal an adult as humanly possible.
I spent nearly a decade being told everything I can’t do, can’t eat, can’t be.
I have fought, clawed, scraped my way back to the the world of CAN, and getting benched back to the CAN’T, even temporarily, just feels like the biggest slap in the face.
It feels like the the universe is saying, “You thought you could just live your life? Ha!”
This current season of my life? I really like it. A lot. I don’t want it to change.
I don’t want to be told I can’t pick up my child - for months.
I don’t want to go back to slow, boring walks for exercise.
I don’t want to miss out on working out with my group of amazing, supportive moms and their awesome kids.
I don’t want to inconvenience our families. Again.
I just…I don’t want to. To all of it.
Yes. I realize this is temporary.
Yes. In theory, I should come back stronger.
Yes, I’m beyond grateful to live in a place where I have access to incredible medical care, and health insurance that helps (understatement of the century) pay for it.
Yes to all.
I can be both grateful and crushed at the same time, and I very much am.
I know seasons change. I knew this one wouldn’t last forever.
I just had hoped for it to last a little bit longer.
I’m oddly nostalgic about losing Penelope. Despite the fact that I am fully aware she is a completely inanimate object, she has been with me through thick and thin - the most obvious being the birth of my child, where she pretty much saved my skin. So ya know, she’s family.
So, friends. We need a name. It needs to be a really good name.
I have one in mind, but I want to peruse all of the options.
We need to do Penelope proud.
Let’s talk.
Nominations are open, let the games begin!
