Standard Issues

You get one life, standard issue. What you do with it is up to you.

Tomorrow, we take the first step towards finding out how much time I have left to do anything with mine.

And if I'm being perfectly honest, I'm scared. 

I'm scared of not getting a heart. But I'm also scared of getting one. The concept of lying on an operating table while someone removes my standard-issue heart from my body and replaces it with that of a dead stranger... seriously, who can even handle this? Who even has to?

I've spent the past 3 weeks moving like a ghost through my house, trying to research this and at the same time trying not to. Because you guys, the things you read, they don't necessarily help and there is always the caveat that your mileage may vary. 

While we've been waiting, we've made two major adjustments: We've tripled my diuretic dose and adjusted my defibrillator. Both modifications improved things for me within 24 hours.

First, the diuretic: In one day, I dropped 2.4 pounds of fluid, apparently mostly from my lungs. If that seems like a lot to you, that's because it is-- 2.2 pounds = 1 liter. My breathing is just about back to normal and things like pulling on a sweatshirt or chopping an onion no longer wind me. There are times that I feel so normal that I find myself wanting to dance when a good song is playing, or wanting to run around the living room with the dogs. But any real exertion still brings on a good, old-fashioned round of gasping. It sort of reminds me of that scene in "Poltergeist" where the Mom, lulled into a sense of normalcy by how quiet things have become in the house, opens the kid's bedroom door only to find a shrieking and chaotic vortex of evil and she starts screaming "I'm sorry!" as if she has offended the Devil. So I try to ignore the door, if you know what I mean. No sense in tempting the Devil.

As for the defibrillator: Because my heart rate was averaging around 44 beats per minute (like a world class marathoner just without all the actual cardiovascular fitness!), they turned on the pacing function of my defibrillator. Now each time I drop below 50 bpm, I feel a tiny electrical tug in the bottom of my heart. I definitely feel better with a higher pulse rate, but that tug is so odd. We talk our whole lives about something "tugging at our heart" and this is just... well, so literal. I'm hoping that my body begins to ignore it like a watch band or a well-fitting bra.

Fun fact about my little defib: It was implanted in 2010 and my battery is now at end of life. It has been reeeeeeally close for a very long time, but in order for health insurance to pay to have it replaced, you have to hit a certain percentage of battery power (2.63 V) and stay there for 3 consecutive days. When we checked it last week, it was at 2.63V but it apparently is a little variable. Once it sits there for 3 days, an internal alarm will go off, which is disturbingly faint. It will do this every day at 10 a.m. for 30 seconds until it's replaced (or re-set). So now every day I have an iPhone alarm that goes off at 9:58 a.m. so that I can mute everything and listen for the alarm that says the health insurance I pay for can provide me with the one thing that may keep me alive until I am lucky enough to receive a new heart. (Assuming I'm now healthy enough to have the surgery.)

You will be unsurprised to hear that the alarm tone is "I Will Survive."

So I have my outfit planned and am prepared to be the most charming version of myself from 8:45 until noon tomorrow (we are spending a half day with the transplant team). I know it won't move me up on the list, but I feel like these are people who I desperately need to like me. 

Because as of tomorrow my life, that standard-issue one, will largely be in their hands.