Movin' On Up
It would be disingenuous to say that Wednesday's heart procedure didn't go as planned.
That's the funny thing about being a member of the Planning Tribe: Since I planned for multiple outcomes, I wasn't caught flat-footed. What I can say is that between the 4 possible outcomes listed in my previous post, your Lovey here didn't anticipate it would be a little from Columns A, B and C.
So to rephrase: That didn't end as anticipated. And it's an awesome ending... but it's gonna take me a little time to get you there. Walk with me. It'll be fun.
The procedure itself was as uncomfortably bad as I remembered. This time, however, they gave me the Valium too late and instead of grooving for a while before the procedure and then suffering through it with all faculties excruciatingly intact, I didn't groove at all until everything was over. Also this time, I had the added bonus of the medical team initially trying to conduct the procedure via the brachial vein in my right arm, but after an unplanned intrusion into my brachial artery they went for the jugular anyway because apparently in addition to having a short person's heart, I have a little person's veins. Seems odd to be learning this so late in the game. But, whoomp there it is.
Tears were silently shed from the un-muzzled pain and it eventually ended with my blood pressure (BP) crashing again because apparently my heart is closed for maintenance until further notice. So after many hours of post-op attempts to raise my BP (yes, ham and potato chips were once again administered), I landed in a CCU bed at 8 p.m. (CCU = cardiac critical care unit. CCU also = private room).
As always when I arrived in the CCU (never thought that would be a phrase I'd ever type or utter) I felt like a complete impostor. For whatever reason, the message that I am pretty much dying just doesn't make it to my brain and I show up looking like a pudding cup-clutching weirdo in pigtails and her own pajamas who's ready to learn all about you and maybe have a late-night dance party. Also, this time I kind of had luggage. Not Lovey's steamer trunk exactly, but a leather backpack that I insist we call a rucksack (with rolled R's) and a small shoulder bag. You know, tasteful. Understated. Well-planned.
After getting settled and somehow spending 2.5 hours doing nothing, I began my hospital ritual of 100% creeping myself out by turning out all the lights and watching a horror movie on Netflix. This one was actually even called "The Ritual" but definitely didn't include anyone doing anything in a hospital (I'm not certifiably insane). Next up: Ambien, ear plugs, and sleeping mask followed by a half hour of me lying wide awake and stiff in the silent and absolute darkness, wondering if some sort of monster or ghost is going to grab my foot or just hover above me. I'd guess I went to sleep around 12:45 a.m.
At 1:15 a.m. a hand did touch my shoulder and I ripped off my sleeping mask to find a perfectly alive and benevolent human nurse hovering over me with the splendid news that, as the aforementioned impostor, I needed to give up my CCU bed to an actual emergency patient. So in an Ambien and ill-humored haze I packed up my belongings and then carried most of them myself to another floor (because even at 1:15 a.m. while drugged up in the ICU, I don't want to be a bother to anyone, so no of course I don't need a wheelchair, I'm great, thank you! How are you? Do you need help with that?), where I was assigned a bed in the Oncology ICU, of all places.
I remained gracious with the two nurses who were handling the hand-off as I know it wasn't their doing, I'm sure they don't enjoy moving people and some day I will actually be that emergency patient. Still, by the time they got me settled into my new bed with a pillow and a blanket, my BP had miraculously hit 100/45 after hovering in the 60s/30s, so I think my highly-agitated vital signs may have given my true mood away.
But the next morning I awoke (waaaay too early) to find myself in a large, bright room with a beautiful water view of Montlake.
The team in the Oncology ICU was great, there was pudding, and eventually the doctors came to do Grand Rounds. UW is a teaching hospital so this means that the nurse practitioner who was overseeing my care presented my case to a supervising doctor while a small crowd of interns, residents and medical students shuffled their feet, avoided eye contact and listened. It's a little weird to lie there in your jammies while a group of strangers talks about you in the third person and as if you aren't even in the room, but hey, these kids need to learn somewhere.
Eventually the supervising cardiologist (who works under Carolina) couldn't hold in his curiosity any longer and asked me why in the world I received the Yellow Fever vaccine. And so now a group of med students at UW knows all about the gorillas of Uganda. And at that point, I believe a medical consensus was reached that not only should I be discharged if my BP continued to rise, but also that I'm a complete weirdo. Seriously, either everyone in the world has already had this vaccine or I'm a true outlier as a transplant patient for not wanting to waste another solitary moment not seeing the world and all its splendor.
My physical therapist came in and asked if I was up to a 6-Minute Walk. And because I'm me, of course I was! This test is just a simple walk up and down the hallway for 6 minutes to determine how I'm doing cardiovascularly. One of the floor nurses was walking by as we were about to get started and decided he'd walk with me and provide "theme music" via his iPhone. I let him choose the tunes, and eventually he settled first on "Rawhide" and next on "Walk Like an Egyptian." And again, because I have what I think of as "Chicken-With-Its-Head-Cut-Off Syndrome" in which my body doesn't know it's near death, and because I clearly wasn't getting enough attention there in ICU, I literally danced down the hallway. I started with a cute little boot-scooting lasso move that I likely thought looked like this but in reality looked like this... and as the song changed, switched into that stupid "Egyptian" dance from The Bangles' video.
And I wonder why they think I'm strange. Also later my nurse told me that Charles, the theme music nurse, asked him "What is she in here for??"
Eventually Carolina came to visit and I've kind of buried the lede here, so hopefully you're still with me:
THEY MOVED ME FROM STATUS 2 (Suck It Up Buttercup) to STATUS 1B (DEFCON1) STATUS.
I'm actually listed as Status 1BE, with the E = Exception. This means that they have moved me to this higher priority status but without an LVAD (yay!) or omnipresent IV meds (also yay!). They feel that anatomical issues make me a bad candidate for both.
So, as I think of it, it's all of the priority of 1B, but none of the mess. And I get to continue living at home, unless my condition worsens.
E = EXCEPTIONAL
E = EXTRA SPECIAL
E = EFFRICA! ("Africa" with a South African accent, and with apologies to my dear friend Caren)
Carolina also shared that in the past couple of weeks while I've been on "pause" fighting the great White Blood Cell War of 2018 against the Yellow Fever virus, they have had to turn away a couple of short people hearts... and she feels that my heart might turn up in the next 2 to 3 weeks.
WHOOP WHOOP WHOOP! THIS IS NOT A DRILL! I REPEAT THIS IS NOT A DRILL! WHOOP WHOOP WHOOP!
I have a consult with Kevin on June 15 to at least discuss interim mechanical options (i.e., LVAD nope nope nope), but everyone thinks this is an unlikely route and as you all know, this does not displease me.
So as of yesterday, I am back on the list, my phone ringer is turned back on, and I'm waiting. If I'm being completely honest, it feels a lot like I'm strapped to the front of a huge locomotive that is rapidly running out of track. I know that there is a better life on the other side of the impact. But I will still have to live through the impact and the recovery thereafter. It's exhilarating and terrifying and completely out of my control.
Thanks for the walk, you guys. It helps more than you'll ever know.