Hide the Silverware
It's late in the afternoon, which means I'm exhausted and grumpy as hell. I'm not sure if you're familiar with "The Spoon Theory," but if you were to loudly ask me how many spoons I have left right now, I might tell you where you can put your silverware and it wouldn't be in the sideboard.
I hate this.
I really hate being this short-tempered, but earlier today I couldn't figure out how to work a voice mail tree in order to reach my long-term disability claims manager, so everyone has to cut me some slack. You want me to look at a phone's buttons and figure out how to spell "K-A-R-A?" Yeah, you can stuff your silverware too.
(Side note: It's possible that it's "K-A-R-E" and I just wrote it down wrong because I frequently do that. And really, couldn't you have direct-dial numbers for people who are on DISABILITY to use? Real slick, The Hartford. And finally, what a weird name for a company. That's like calling myself "The Andrea," which I may start doing now. Silverware. Stick it.)
Soooo, here's a cool segue: I met with my transplant cardiologist yesterday and had an echocardiogram done. The good news: Carolina was absolutely delighted that I chose to get the Yellow Fever vaccine, and that isn't even sarcasm. She said she hopes that in one year, I am in Africa glad-handing gorillas. No, she didn't use the term "glad-handing" but was very pleased that I refuse to let this hold me back, even if it means we had to put my potential transplant on pause for 30 days. I truly adore her. Still, you guys, when even your transplant cardiologist finds you inspirational, you're really peaking as a patient.
The bad and not-at-all-surprising news that came out of the office visit/new study: My heart function is declining. I am getting worse.
I knew this. I mean, I heard myself sitting in that exam room and giving all of the right denials/excuses as to the recent cardiac gymnastics I've been feeling, and the increased breathlessness and the unearned weight gain. (Except for the weight gain, because screw that, I put on 3 lbs in 2 days while eating 1200-1400 calories a day and no one deserves that. No one should gain weight while literally feeling hungry all of the time, even when they just finished eating.) But based on how I've been feeling, I thought there might be a possibility when I walked into the hospital yesterday that I wouldn't be walking back out the same day. We've spent the past week changing my meds and adjusting dosages and there's just no way around it: I'm retaining fluid and my heart isn't pumping as well as it did a few weeks ago.
Which brings us to the "good" yet super-weird and now-I'm-overwhelmed-and-panicking news: Due to my height, or more accurately the lack thereof, my name is moving up rapidly on the transplant list. Apparently I'm one of their shortest candidates and size definitely matters. While Kevin (transplant surgeon) told us that my wait could be two years, Carolina (transplant cardiologist) is hoping I have a new heart by July.
JULY, folks. As in like, 7 weeks away. I've waited longer for a dermatology appointment than 7 weeks. We knew this was coming, but it's always been on the indistinct and surreal horizon. Not in 3 fortnights + some change.
Inside of my brain, this is happening:
WHOOPWHOOPWHOOP!
DANGERDANGERDANGER!
THISISNOTADRILL!
DANGERDANGERDANGER!
WHOOPWHOOPWHOOP!
But wait, there's some even more upsetting news! If I don't have a new heart by August, she is recommending that we probably bring me into the hospital for evaluation for an LVAD (Left Ventricular Assist Device), which is something no patient anywhere, ever, wanted to be a part of. It is a bridging device that extends the pre-transplant patient's life while they await their new heart-- AND it would immediately move me from Status 2 to Status 1b. That sounds totally reasonable, and all thumbs-up everybody for wock and woll, right?
Wrong. It's open heart surgery (sternotomy) in which you are cracked open and hooked up to an external pump that you carry around like a little purse that allows your heart to keep pumping blood while completely bypassing your left ventricle. You are totally dependent on it in order to continue living. And it is OUTSIDE of your body attached by tubes and wires and stuff, operated by batteries during the day, and you plug into a wall overnight.
Fuck, no. Let's go to the map:
First of all, I already have a purse and it's really cute, was stupidly expensive and is already reallyfull of stuff.
I recently lost roughly 30 pounds and have finally hit the point for the first time in 7 years where I sort of have a body worth revealing in (and out of) clothes and this fucking thing guarantees loose fitting tops. I don't do loose-fitting tops, even when 30 pounds heavier.
You may not know or even suspect this about me, but I go through life feeling painfully self-conscious and ridiculously awkward at all times* as it is and the last thing my psyche needs is people wondering why in the world there is medical crap sticking out of my body while I traipse around in public.
I get panicky when I'm away from home without a backup iPhone charger-- how the hell am I supposed to walk around with a battery-operated pump KEEPING MY HEART PUMPINGwithout living in a constant state of freak out?
Before your brain compels you to lecture me on "but this is your chance at life, Andrea," let me assure you that I get it. I have spoken to other patients about it and will continue to educate myself on it and I will begin to visualize and accept it. And ultimately, I will do it, if they tell me it's what I should do. But I will do it with extreme prejudice and malice aforethought.
I go back on The List on June 3. I don't feel well. If you see me out and about during the day, I may fool you because for some reason I'm compelled to act like nothing is wrong with me, even though it is exhausting to do this. My brain is not functioning properly due to lack of oxygen-- I sometimes really cannot remember my own address and I never have any idea what day or date it is, no matter how many times I look at my calendar (And for the love of all that is holy, please don't tell me "I do the same thing!" unless you are actually experiencing cognitive impairment because I can legit tell you, no you don't). I got winded sealing a package at the Post Office today and sometimes I get angina when I'm changing into my pajamas.
So, my current summer plans include the following:
More of feeling like this, and this sucks large. But it does involve a cute purse and the strange ability to make even myself believe that I am actually living a real life that isn't on hold.
A new heart and all of the glorious recovery that will entail.
An exterior heart pump, actual (and not just self-imposed) freakishness, and an umattractive purse.
Both 1 & 2.
Both 1 & 3.
All of the above.
SPOONS SPOONS SPOONS SPOONS SPOONS SPOONS SPOONS SPOONS SPOONS SPOONS SPOONS
And yes, I get that I'm focusing on the wrong thing here and you also have to cut me some slack on that. Right now it feels like The Boy and I are adrift on a vast and turbulent sea, with no actual choices to make, just riding each swell as it comes along and clinging to each other for dear life.
And using metaphors about fucking silverware.
*I realize that it makes no sense that someone who feels this way should try to be an actress, singer, dancer or rock star. But then, of course it doesn't.