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.