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.