That's a Wrap

I have to tell you, I really didn’t think it was going to happen. 

I thought it was a good sign when I checked into the hospital and they seemed to be expecting me. 

I thought it was an even better sign when I got as far as wearing only a hospital gown, grippy socks and a hairnet with an IV in my arm, ready to go. 

I thought it was a pretty sure bet when my surgeon walked into the room and introduced himself to my husband. 

Then he closed the sliding glass door, sat down, paused, and said “I don’t think we should do this surgery.”

Cue record screeching to a halt. 

Cue the sound of a pin dropping. 

Cue the sound of my stomach literally dropping out of my body and hitting the floor. 

You have got to be kidding me. 

To review, this was my third attempt at heart surgery in an 8-month span. 

Surgery number 1 was denied by my insurance company, claiming I was in fact in heart failure, but not enough heart failure. 

Surgery number 2 was cancelled when my doctor got fired 48 hours before my surgery and no one bothered to call and tell me. 

This was supposed to be surgery number 3. Third hospital. Third surgeon. Third type of procedure. 

And the man who had previously felt I was a great candidate, was backing out. 

If there is an emotion where you want to simultaneously cry, scream, laugh, break things, and bury yourself under a minimum of 5 blankets, I was rocking it. 

I honestly don’t remember what I said. I feel confident it was likely incoherent. 

After a lengthy discussion we came to the conclusion that the doctor just wanted to be sure I knew that this surgery wasn’t going to get me back to 100%. It wasn’t even going to give me 80. The very best scenario was 60% improvement and I’m fairly certain there was mention of the extreme risk of the procedure both in efficacy and mortality at least 20 times. 

He told us he was going to step out and give us some time to talk about it. 

In a nutshell - this is the procedure, it’s super risky and invasive, we don’t even know if it will work and you might die. 

Cute. 

Oh and side note, you are in fact in heart failure, so without surgery, you’ll be in total heart failure in a few years. 

Adorable. 

I signed 7 million papers. I met with the entire cardiac anesthesia team. And then I waited. 

And waited. 

People, I have to tell you. I’ve had so many medical procedures that I really don’t get very nervous until the two seconds between when I see the mask coming at my face and when I’m out. But this time? This was different. And due to an emergency that took my OR space, I had to wait for over SIX HOURS.

There is nothing quite like signing your life away, and then sitting there with literally nothing to do but think about what you’ve just done. 

Or more specifically, scroll through your phone looking at photos of your daughter and hem and haw over whether you made the right decision. 

Over and over and over again. 

In short, I’d give it a 0/10 Yelp review. 

Do not recommend. 

Suffice to say, I have never been so happy to wake up shivering like crazy in the ICU. 

I was truly delighted to feel like an elephant had stepped on my chest, and even happier to hear that despite the drama and despite it being even more difficult than expected, the surgery went well. I had survived a lead extraction and new lead placement and was now the proud recipient of a Medtronic Left Bundle Branch pacemaker. 

The next morning, the device rep and his intern stopped by on their rounds. The rep had been there for my surgery, and told me how he thought it was the best left bundle branch pacemaker surgery he had ever seen. He said he couldn’t wait to come in and see me today to see how my readings looked. 

They hooked up all of the wires. 

Pressed a few buttons. 

Paused.

“Wow.”

After printing off my EKG, the rep asked if he could bring it into the hall and show some people. 

I told him if he wanted to make it into a T-shirt and wear it daily, I’d support it. 

Written across the top, in tiny letters next to my name and identification number was one simple word: normal. 

And I think in that moment, I felt for the first time in awhile, a teeny tiny glimmer. 

Yes, I fully understand that it won’t look like that in every moment of time. As I said, 60% improvement is the best case scenario. But I tend to think that starting my very first day powered by Ruth Pacer Ginsburg in the “normal” category is a pretty great place to begin.  

Recovery with a toddler has been...let’s just go with challenging, despite our families literally dropping everything for the third time this year to help in every way imaginable. I thought I had prepared for every last thing, but what I couldn’t prepare for was a 2-year-old who just didn’t understand why Mommy couldn’t pick her up. For 8-10 weeks. Due to the more-extensive-than-expected nature of the surgery, my restrictions were twice as long as we had initially expected. Needless to say, tears were shed by all parties. 

True to form, right when I had finally reached the 2-month finish line, I landed myself back in the OR for an additional surgery. I did, however, have a glorious 48 hours where I could pick up my daughter with glee before I got benched again, and you better believe there was some twirling. 

Also true to form, what my doctor thought was an infection turned out to be an allergy to the stitches used in my initial incision. 

I think at this point I should switch from a medical alert bracelet to a list tattooed across my chest. 

Although, let’s be honest, I’d probably be allergic to the ink. 

Perhaps truest to form, the incision revision took place in a new hospital, which brought the grand total of this experience to 10 months, 6 hospitals, 7 doctors, 4 different types of procedures, 4 COVID tests, 2 rounds of general anesthesia, more antibiotics than my gut would like to admit, two brands of pacemakers and a partridge in a pear tree. 

And lest we think I’m leaving it all in 2020, I’m in need of an appointment with a plastic surgeon* in the next few weeks, seeing as how I have what looks like fishing line sticking straight out of incision 2.0. 

*Of note, I’m pretty sure this is the one doctor I don’t already have. 

Despite the stress and fear, drama and frustration, plaguing doubt and incredible burden to my family and friends, I have to say it was worth it. There’s something I’ve been carrying around since early 2019 that’s been a heavier weight than I realized, and I am absolutely thrilled to throw it into the flames of the 2020 dumpster fire. 

Diastolic heart failure. 

You know that feeling when you get a new car and only then do you realize how bad the old one was? Or the first run in brand new sneakers where you realize you’re not supposed to feel every crack in the pavement?

That’s a little bit what it feels like to go through life when your heart is no longer working twice as hard as it should. 

I think it is generally our inclination to just keep on moving through life when there are gradual changes. It’s not like you know the exact moment where your heart starts working too hard, it just...happens. So you go through the day with a little more difficulty getting up the stairs, pushing the stroller up the hill or standing at the counter cooking dinner. You blame work, a toddler, the pandemic, and a whole host of other things on being too tired to put on socks. You start drinking coffee for the first time in 37 years because you’re falling asleep at work. 

Over time you forget that you ever felt differently, and time just passes until you suddenly realize you had a day where you nearly passed out 15-20 times. 

It’s not until it’s over that you realize what it really felt like. 

So long, heart failure. You gave me the gift of time with my family during a pandemic. You constantly reminded me just how much I won the lottery with my family and friends. You challenged my faith in myself as a wife, mother, daughter, and friend. You made me a better practitioner. For all of those things, and more, I’m grateful. 

Also, peace out. 

Don’t let the door hit you on your way out. 

So...We're Doing This?

So.

6 doctors, 3 hospitals, and 2 states later, we are doing this.

Well, not exactly. 

“This” would imply that we’re doing the exact same thing as originally planned.

But it’s 2020, so let me revise:

6 doctors, 3 hospitals, 2 states, and 3 types of surgery later…we are doing this. 

April, July, and now October.

I’ve been trying to write a blog post about this for a few weeks, and every time I sat down to write, I just stared at a blank screen. Over and over and over again. It didn’t even feel like writer’s block, it was more of a creative weariness. My tank on this topic is absolutely empty. 

I’m talking scrape-the-bottom, bone dry. 

I’m waiting for heart surgery. 

I’m planning every last detail for childcare and fur-child care.

I’m taking a few weeks off from work, and scheduling an “Out of Office” reply in my inbox.

I’m pre-ordering toiletries and medicine and snacks I can open with one hand. 

I’m scheduling my COVID test.

I’m setting a reminder on my calendar for when to start using the pre-surgery soap.

I’m putting the freaking mail on hold, for crying out loud. 

All for the third time this year.

To be honest, I don’t think I’ll believe I’m actually having surgery until it’s over.

This time I’ll be traveling south, to VCU, which unbeknownst to me is the electrophysiology cardiology capital of the East coast, possibly of the entire country. Who knew?

After everything imploded in July, I spent several hours hanging out with my boyfriend Google (don’t worry, Mr. Restarting My Hard Drive is aware of this relationship…as well as my other boyfriend, Amazon Prime). Over and over and over again, I kept coming across the same two names for all of the research in the world of Conduction System Pacing. One in the middle-of-nowhere Pennsylvania, and one right here in my own state of Virginia. I figured if anyone could tell me what to do next and if anyone could tell me when/where/how to do it, this was the guy. 

So I picked up the phone.

There was a cancellation.

I got an appointment.

The records were sent.

I had the (virtual) appointment. 

And here we are.

In all, I’ve seen six different electrophysiologists since July and the final tally was 4 votes for surgery, 1 who said he would “probably come to the same conclusion eventually” and 1 who initially said no (re: my last blog post) but then changed his vote when all of the pacemaker adjustments he proposed made matters significantly worse.

As I mentioned earlier, this surgery is actually different from the intended July surgery, and very different from the original surgery proposed in April. This time I’ll be having (ya know, if the doctor doesn’t get fired again) left lead bundle surgery, and a laser lead extraction. The left lead bundle is slightly different than the His-bundle pacing that was intended for July in the sense that it’s more direct - and therefore also more difficult to do correctly. For explanation’s sake, let’s talk broccoli. 

Yes, broccoli.

So if you wanted some broccoli, you could go to the grocery store. Living in the land of privilege as we do, most of the time you can march yourself into the grocery store, go to the produce section, and grab yourself some broccoli - florets, stalks, an entire head, it’s all there. It’s an all around more convenient way to get some broccoli. 

However, sometimes the store is out of broccoli. Sometimes they get a shipment of broccoli, but it has already gone bad. Sometimes you can only use half of it, and you have to toss (or compost!) the rest. 

On the flip side, if you want to go somewhere where you can almost always guarantee you’ll find some broccoli and you can even pick it out yourself, you’ll go to the broccoli farm. It’s farther from home, and the road to get there is long, rocky and full of potholes, but if you take the time to drive there, you will almost always get what you want.

His-bundle pacing is getting broccoli from the grocery store. Left lead bundle pacing is getting broccoli from the farm. It’s a difficult place to access, but the results are much more consistently positive. 

Seeing as I’m going to the experts in this field where surgeons have performed literally hundreds of these surgeries - we’re going to the damn farm. 

Another change of plans is to remove one of the existing leads I have now, rather than leaving it in place and capping it off (the plan in July). Any sort of loose foreign object in your body is cause for concern, but especially a metal one near your heart, which would cause irreparable harm if I accidentally had an MRI in the event of an emergency. So the surgeon will bust out a light saber or two (ok fine, just a medical-grade laser) and remove the third lead while they’re in there.

One of the most bizarre elements of this medical drama is that, thanks to the pandemic, I’ve never met my surgeon. The virtual appointment I had was with the head of the department, who despite being the leading expert in the field, no longer performs surgeries himself. His entire staff is made up of doctors he has extensively trained himself, but he is no longer wielding the scalpel. 

Nothing like introducing yourself to someone moments before they have access to your heart with a knife.

So we’re doing this.

Penelope’s third attempt at a retirement ceremony.

Now to the most important part - the new name. In all of the chaos that has surrounded this surgery, I’ve decided to break from tradition when naming Penelope’s successor. The submissions for a new P name were extensive, impressive and appreciated, but I think I’m going to hold onto them for 7-10 years from now (let’s go with 10 please, body).

Consider this your pre-birth announcement for RPG, or Ruth Pacer Ginsburg. 

At the end of the day, I can think of no better moral compass for my heart.

Wanted: Crystal Ball

Well friends, if 2020 has proven nothing else, it has proven that life is never, ever predictable.

After 10 years on this journey, hundreds of appointments, zillions of lab tests, countless procedures and diagnostic testing and my literal genes taken apart…I never imagined I’d be back at square one in any capacity whatsoever.

And that is exactly where I am.

After that, ya know, super eensy-weensy thing where I got stood up for heart surgery, I spent a day or so in complete shock…and then switched into action mode.

My family reached out to every contact imaginable. We sent emails. We made phone calls. We pooled every resource we could think of, and then started making appointments. 

I naively thought that I would find an incredible doctor with impeccable referrals at a top hospital, and basically just reschedule the surgery and start all over again.

OK sure, maybe they would want to take some time to get to know me, I could roll with that. 

As I’m sure you can guess, that is not at all what happened.

I DID find an incredible doctor with impeccable referrals at a top hospital. 

He spent a long time talking with me, asking me lots of questions and looking at my pacemaker settings.

He got out a piece of paper and drew pictures with diagrams and numbers and statistics. 

Who doesn’t love a good visual!?

He wore a bow tie and was kind, invested and engaged. 

And what he said could have knocked me over with a feather. 

“I don’t think surgery will help.”

Cue: record screeching to a halt. 

The deafening silence after the microphone drops.

…I’m sorry, what?

How on earth do you go from two doctors telling you that you need semi-urgent, very necessary surgery to another doctor looking at the exact same puzzle pieces and declaring the most polar opposite analysis humanly possibly? 

And what do I even begin to do with that? Get 7 million opinions, make a bar graph and see which bar is the highest?

I was completely and utterly shell-shocked. 

Sure, the initial thought of avoiding surgery is obviously incredible. No anesthesia! No cutting! No recovery!

But having surgery also meant a solution. It meant that I would endure something difficult and come out feeling better on the other side. 

At this point in time, I would be over two weeks post-op, getting the settings just right on my new device and very slowly starting to get my life back. 

Instead, I am back at square one, with a doctor who has known me for less than 14 days.

I spent the week in and out of the outpatient center as the doctor changed and tweaked the settings on my own personal robot, Penelope the Pacemaker. Despite my insistence that every possible permutation of adjustments had been made, every doctor feels the need to do it his/herself. To some degree I can understand this...but when I’m clinging to the wall as I walk down a hallway because I can barely stay upright, my patience wanes. 

Two weeks, multiple adjustments and tweaks later...and I am back with the original settings that packed up my family several weeks ago and marched into a hospital to have a surgery that never happened. 

I have a heart monitor strapped to my chest and a prescription for steroids.

To say I feel defeated is an understatement. 

Yes, I have several more appointments lined up with other doctors for a 4th, 5th and 6th opinion. 

No, I have absolutely no clue what I will do if they continue to have such dramatically dissenting opinions. 

Yes, this has totally rocked me.

In the span of 6 months, I’ve gone from having bi-ventricular pacemaker surgery, to his-bundle pacing surgery to no surgery at all. Same symptoms. Same statistics. Same tests. 3 doctors, 3 hospitals, 2 states, 6 months. 

Three cheers for 2020…

I haven’t been home in weeks, and while the thought of sleeping in my bed is more than a little enticing, the thought of returning home exactly as I left is also a little bit gut-wrenching. As if the past few months of my life never happened. 

Despite the fact that I cognitively understand that I have done nothing wrong and am just part of an unbelievably unprecedented situation, I somehow can’t shake the feeling of shame. As if the doctor didn’t show up to my surgery as part of a grand intervention or something else equally as irrational. 

I feel like I’m returning home with my proverbial tail between my legs. 

It’s a fragile, emotional place to be, and not one that I really know what to do with - especially when the rational part of my brain is screaming that it makes no sense at all.

I’m a planner. I make plans and hypothetical plans and hypothetical plans if my original hypothetical plans don’t pan out. 

And now? This is far beyond even my third set of hypothetical synopses. 

In times like these I always find it helpful to focus on what I know for certain. It’s helpful to remember what I can rely on as fact, when the rest of life is swirling around me. 

Right now, I don’t have a lot of facts.

All I know is my track record for getting through hard things is pretty good.

And right now, that’s all I’ve got.

Carry on, friends. 

Couldn't Make This Up If I Tried...

Hi there, friends.

Didn’t expect a blog post from me today, now did you?

Join the club.

I didn’t expect to be typing this from the comfort of the couch, with my favorite fluff ball by my side.

You know what else I didn’t expect?

To walk into the hospital at 5:30 this morning and be told that my surgery had been canceled and my doctor is no longer practicing at the hospital.

(Feel free to read that several times. Yes, you are deciphering the words correctly).

People, I couldn’t make this up if I tried.

To say that this is a train wreck is not quite a strong enough phrase. 

To say that I have absolutely no idea what happens next is also quite the understatement. 

Do I just go home and resume my life, with a casual side of heart failure?

I moved my entire family, closed up work for a few weeks, rescheduled other appointments and procedures for every member of my family (even the dog!), prepared and planned every last detail, did the emotional goodbyes with my family this morning…and then got sent home 10 minutes after I arrived.

I’d also like to point out that this is now the second time this year that my surgery has been canceled. Different procedures. Different doctors. Different states. Same outcome.

2020, friends. One for the books.

I’ve spent all day on the phone, calling the disappearing doctor’s now former office, my home cardiologist, the hospital, every member of my family, desperately trying to piece together what happened. 

More pieces of this seriously screwed-up puzzle are still coming in, but as of now all I know is my surgeon unexpectedly and abruptly left the practice. If I glean correctly, this happened last Thursday. Another doctor in the same practice evidently called my home cardiologist to tell him on Friday. 

Neither one of them thought to call me. 

When the office staff received my pre-op labs and COVID test, somehow they didn’t see that as a GIANT CLUE that no one had called me.

So here we are.

I received a phone call this afternoon from the disappearing doctor’s colleague who never called me. It was a very sincere and heartfelt apology. He took complete ownership for the absolutely unfathomable error. As a highly sensitive person, I value a good apology. But at this present moment, it’s not enough.

And much more importantly, what the heck do I do now?

I’ve put out some feelers, I’m doing some more research. To be honest, at this point part of me is just throwing my hands up and hoping that something just falls into my lap.

Unrealistic? 

To say the least.

I have been moved to tears by the outpouring of love and support from our family and friends. I cannot even begin to describe how much it has meant to me and my family, and even though I know this situation is of absolutely no fault of my own, a small part of me is almost embarrassed to show up empty-handed. 

As if people went out of their way to say congratulations on your graduation, but it turns out you failed a class and didn’t actually get your diploma.

For now I’ll just say thank you from the bottom of my ever-so-slightly-still-broken heart. 

Onward and upward, friends.

Spicing It Up

Well friends, quite a year, eh?

Just a few things have gone on, ya know, here and there.

(Understatement of the century).

You know what would make this year even more interesting? 

Heart surgery. 

Because why the heck not. 

You may remember from my last blog post that Penelope was given an eviction notice. You may also remember that my cardiologist had decided on a plan and I even had a surgery date. 

You know what has happened since that day? 

A global pandemic.

An insurance denial. 

An emergency surgery [for my cardiologist.]

To name a few…

So now here we are, months later, trying to piece together the next steps of a seriously fragmented puzzle, all of which have led me to having a completely different surgery, in a completely different state, at a completely different hospital, with a completely different doctor, on Monday.

(How is it again that we are only slightly half-way through 2020?!?)

When I saw my cardiologist’s number pop up on my phone back in March, I wasn’t surprised. I had been expecting someone to call and tell me that my surgery was being postponed until it was safe to resume normal surgical activity. I was NOT expecting a nurse to tell me that my surgery had been completely cancelled because my insurance company decided I was not in ENOUGH heart failure for their liking. Heart failure? Yes. Enough for them to pay for a surgery? Evidently not.

When my doctor mysteriously disappeared a few hours before I was supposed to meet with him and figure out what on earth we were going to do, I (along with his staff) treaded water for weeks while we waited for him to return…and we all realized just how much we rely on him for everything. He is, thankfully, back to the office and healthy and happy now, just in time to paddle my seriously off-course canoe. 

Speaking of, it’s always a really great sign when the aforementioned brilliant doctor who specializes in the rare and unusual...sends you to someone else.

In fact, on Monday I’ll have heart surgery with a doctor I have only met on the internet, which feels like a mix of a plot for Law and Order and like I swiped right on Doctor Tinder. 

After consulting with some colleagues, my doctor sent me to a new cardiologist who is well-known for a relatively new procedure, called His bundle pacing. I’ll spare the squeamish the details, but it involves a lead straight to the His bundle in the center of my heart, bypassing the problematic areas entirely.

Picture sifting through the ice and trying to snag the last maraschino cherry in your Shirley Temple with a drinking straw, and you’ll be pretty close. 

It’s not a guaranteed procedure - meaning there has been a lot of success with this surgery, but sometimes it doesn’t work. My track record for being the exception is...well...let’s just go with “lengthy,” but if there was ever a time to break that pattern, this is it. 

Within 2 minutes of meeting my doctor in a virtual appointment, he told me that if things didn’t change, I’d be in complete diastolic heart failure by age 44. 

I’m 37. 

So that’s cute. 

I have a LOT more to do with my life and I need the time to do it. So this has to work.

No pressure, doc. 

It’s unclear if Penelope will actually be retired, or if she will just “get a little work done.” Until my doctor goes in and examines the situation, he won’t know if he will need to replace the unit or not. 

To be clear, Penelope is my literal ride or die and I am grateful for every single heart beat she has provided since 2014. 

To be even more clear? If they replace the entire thing, I get 8-10 years before another surgery. If not, I do this all over again in 4-5. 

I told my doctor not to try too hard. 

Perhaps the strangest thing about this whole experience is doing it completely alone. On Monday morning, suuuuper bright and early, Mr. Restarting My Hard Drive will drop me off at the front door of the hospital...and pick me up whenever I get discharged, hopefully the next day. 

In a weird way I feel grateful that I’ve had so many surgeries before, and I have experienced the long wait time between arrival and when you actually head into the OR. Doing it alone will be different, but at least it’s not my first rodeo. 

Waking up from anesthesia alone, however? Now that’s strange. 

On the plus side, it will make for some exceptionally interesting FaceTimes for my family, so there’s that. 

In general, I prefer to find out I need surgery and be in the OR within a few days. The longest I’ve ever waited is a month, and it was brutal. This surgery? I’ve waited 5+ months, and I’d like it over with right now thankyouverymuch. 

I’ve had far too much time to worry about every last thing. Too many minutes thinking about the things I’m going to miss. Too many moments wringing my hands with grief and anger that I’m forced to miss a single second of my daughter’s life. 

It’s time to rise up, friends. 

Let’s do this. 

Now Accepting Nominations for a New P Name….

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! 

A Divergent Decade

Whew, friends. It’s been a DECADE.

(How often do you get to whip out THAT line, eh??)

Tomorrow is the start of 2020 and I am full of ALL the feelings - wonder, excitement, trepidation, apathy, and if I’m being frank, a wee dose of fear.

The past ten years have included the most unexpectedly life altering moments of my 36 years. Vivid memories I’d like to forget, and fuzzy memories I desperately wish I could better remember. 

Ten years ago, I could never have imagined how my life was about to change. Could not have written the prologue if you paid me. My story, like most, wrote itself and has been one heck of a thriller.

I worked everyday in a community I loved, with students whom I adored. 

I ran all the time. 

I got engaged. 

I was diagnosed with an autoimmune disease. 

I got a virus from my students that humbled my young, vibrant body to the core. 

I got married. 

I went on a honeymoon. 

I ran a half marathon. 

I wore silver, sparkly shoes every Friday. 

I was diagnosed with gastroparesis. 

I lost 30 pounds in 6 months. 

I was diagnosed as failure to thrive. 

I had surgery to place a feeding tube. 

I was told by one of the finest hospitals in the world that they couldn’t help me, and sent off to another. 

I saw a doctor who wanted me to surgically remove my stomach. 

I actually considered it. 

I flew to Minnesota, planning to stay for a week, and came home over 3 months later. 

I met and lived with the most incredible second family I could have asked for. 

I started writing.

I had a PICC line placed. 

I endured an endless litany of medical tests, ranging from painful and scarring to epically comical.

I was sent to behavior medicine when nothing else made sense.

I was genuinely thrilled to have unexpected surgery in the middle of the program, so I could escape the worst 3 weeks of my life. 

I lost my right submandibular gland.

I went back to school. 

I lost my thyroid. 

I was told I had cancer. 

I spent so much time in Minnesota in one year that I could have applied for residency. 

After spending the majority of 3 years in hospitals, I finally came home for good. 

I lost my job. 

I spent years entangled in a legal fight that made me question my faith in humanity and forever altered how I look at the world. 

I started my own company. 

I had surgery on my heart, including the “birth” of Penelope the pacemaker. 

A month later I had surgery to repair an abdominal fistula. 

I had a muscle biopsy that has since been named the “sewing experiment” for the ridiculously bad scar it left behind. 

I grew my practice. 

We bought a house. 

After seeing doctors at Johns Hopkins, Mayo Clinic, Cleveland Clinic, Georgetown, George Washington, Penn, Tufts, Brigham and Women’s, INOVA, Jefferson, Lankenau, and countless private practices, a geneticist 10 minutes away discovered 2 genetic mutations that have never been seen before. 

I got kicked out of 3 fertility clinics. 

A perinatologist wouldn’t even open my file.

My fur baby came into my life. 

I did 2 years of IVF, 150 miles away, in a veil of total secrecy. 

I got pregnant and had a shockingly delightful pregnancy. 

I gave birth to my beautiful daughter. 

I crashed and don’t remember the first few hours after her birth. 

My daughter was diagnosed with a digestive disorder that ironically didn’t come from me. 

I was diagnosed with another autoimmune disease. 

My dog was diagnosed with a digestive disorder (seriously people, can’t make this stuff up). 

I celebrated my daughter’s first birthday.

My last class of students started their senior year of high school.

I started weekly infusions when my cardiac function changed drastically. 

I spent time with my family. 

I restored my soul in the mountains. 

I laughed. A lot.

I cried.

I lost and gained and ebbed and flowed.

I endured.

And that’s just the cliff notes.

Throughout all of this, I grappled with finding acceptance and some semblance of closure. I expected myself to move on, mentally and physically, and was embarrassed that I didn’t find it that easy. More than embarrassed, I was ashamed. I wanted to move on, to close some doors, to stop feeling what I was feeling. Forget the leaf, I wanted to turn over the whole damn tree.

But, you know what?

Ten years later, I think closure may actually be a bit of an illusion. 

How can there be an end point to love and loss?

Closure would mean there is a final chapter to love and passion. There’s not. I will never stop missing the career I had. I will never stop wishing I could run again and not feel like I’m going to collapse every 5 seconds. I will never stop yearning for the ease I had to eat and travel and live my life completely at whim. I will never stop feeling these feelings because I was lucky enough to have them in the first place. Closure would mean never thinking about those years of my life and remembering not only the season of hardship, but also the season of joy. 

Yes, it may seem easier to close the door on the last decade and pretend it never happened. It would save me from reliving pain and grief and loss. But it would also prevent me from some of the most special times of my life. My marriage, which has been pushed and pulled and bent beyond comprehension, is a product of that decade. My relationship with my family has strengthened immeasurably and my friendships are ones that matter. My child - my joy-filled, shattered-glass-ceiling miracle child - is a product of that decade. Erasing the last ten years of my life would erase not only the pain, but also the happiest moments of my life.

You cannot have one without the other. If you want to close off the pain, you will also close off the joy. 

I know that now. 

If the next decade looks a lot like this one did, it will be unexpected. 

And scary. 

And my health insurance just may name a building after me. 

But you know what? 

I’d be ok.

No, not I would be ok. I will be ok. 

I’ll be ok.