A Three Hour Tour
I’m wearing my hair in pigtails, which can only mean one thing: We’re headed back to my place in the city for another procedure. And yes, “my place in the city” is what I’ve begun to call UWMC.
We've known about this one for about three weeks. In my last post I mentioned that I was not feeling well (spoons and all that), and I think the very next day after I started crying at a doctor's appointment about how exhausted I felt (despite sleeping for like 12 hours), Carolina decided to schedule a Right Heart Catheterization. In short, the fear is that my heart function has decreased again and this test will measure my cardiac output by placing a small tube into my heart via my jugular vein. It's an outpatient procedure and ideally it will have us at the hospital for roughly a half day.
There are 4 possible outcomes from today's procedure, with 4 unofficial titles that I have created:
1. Suck It Up, Buttercup: Nothing has changed, I am sent back home and told to stay the course with my current medications. I remain at Status 2 (low priority).
2. My Bad, You Were a Little Bit Right: My heart has lost a bit of function, I am sent back home and we make adjustments to my medications. I remain at Status 2 (low priority).
3. DEFCON1: My heart has lost significant function, and we will begin the steps towards getting an LVAD. If you've been reading this journal you know that nope nope nope. This would move me to Status 1b (medium priority).
4. Lovey Takes The Cardiac Wing by Storm: My heart has lost even more function, and I won't leave the hospital again until I have a new heart. This would move me to Status 1a (high priority) and from the comfort of my home into the boring (but much safer) confines of the hospital.
The procedure itself isn't really scary, other than the whole "hey, they're piercing my jugular vein" thing. I had one done in February and it was a bit painful (a lot of pressure), but doable. Last time they gave me something like a Xanax to chill me out, and then the procedure got pushed back by about 3 hours, so I was 100% wide awake and all emotional battle stations were manned for the whole thing. Today I'm hoping we time the chill a bit better.
(Side note: The literature they provide mentions that most people choose to do the procedure without "sedation." P-shaw! It's not even sedation, and please, I've never been most people. Plus, it's like wine, but for heart transplant patients!)
The outcome here is the biggest stressor. Because I'm Planning Tribe all the way, I have done my best to prepare for #4 above ("Lovey"). I tried to do some research on what to bring with me on this via one of the Facebook Transplant Support groups I belong to and got answers that ranged anywhere from "don't take anything, they will provide you with everything" (not even realistic for me) and "slippers and a reading light" (both very helpful suggestions).
But I don't think the people online really get me. I pack more than that for a day trip into Seattle. If I'm moving into the hospital for the foreseeable future, then for the love of all that is holy I need my own stuff, which is how I arrived at the whole "Lovey" thing last night. My short-term bag includes: Sleep mask, ear plugs, 2 chapsticks, body lotion, toothpaste/toothbrush/floss, various hair ties/headbands, an extension cord, an iPhone charge & plug, my laptop & power cord, a camisole & jammie bottoms, a post- surgical bra, slippers, socks and a book.
But my long-term bag is an absolute thing of beauty. In it, I have tucked: Exfoliants & masks to give myself bi-weekly facials, foot softening cream and a pumice stone, the stuff I put on my eyelashes to make them grow, moisturizer, scrubby exfoliating gloves & lavender body wash for the shower, curly-specific shampoo, conditioner & gel, some light make-up, make-up removal apparatus, a robe, a hoodie, some cargo pants and a tank top, extra socks, coloring books and colored pencils and 3 more books.
You guys, I've become Mrs. Howell.
Part of my strategy in over-preparing is that almost every time I've ever way over-prepared in life, it has been completely unnecessary... so I was kind of priming the karmic pump. The other part of my strategy is that if I have to live somewhere, I want it to feel more like some place I want to live and for God's sake, they probably provide Prell shampoo, which someone once told me they use to clean hair salon floors and my hair color cannot even. (This is likely an old wive's tale. But hey, I'm an old wife.) The final part of it is that I'm ridiculous. But you all know this.
It's been a long three weeks as we've built towards this morning and I have felt alternately far better and still not great. We suspect that my body was fighting the Mighty White Blood Cell War of 2018 post-Yellow Fever vaccine... but after today we'll know for sure.
So now the boat is docking and my anxiety is increasing and of course The Boy (my Thurston!) has been on a conference call this entire time because this is how our lives work. Home, Boat, Hospital, Boat, Home. Lather, Rinse, Repeat.
But you know, with appropriate products specifically formulated for curly hair.