A day in the life of me.
Wake up at 5ish for my first Heparin injection in my stomach. I swear it's not as bad as it sounds. Tiny little needle and I've never been more grateful for my muffin top as they pinch the fat before injecting. I barely feel it at all. Back to sleep.
Wake up again at 7ish because it's shift change and there's lots of sound in the Inner Sanctum. At one point my nurse assistant comes in to update my white erase board with the current day and date, nurse, nurse assistant, charge nurse, and any other information for my day. This does not happen every day. Depends on who my nurse assistant is. Pam is very diligent about doing it. I like Pam. Just not at 7:15 AM.
Back to sleep, which is more like a doze at this point. Snooze fitfully until about 8:30 when I probably give up and either just lie there scrolling through my phone or sit myself up and wait for the nurse to realize I'm awake. Sometimes the nurse guards my door and waves the hoards of residents, PAs, and heart transplant team doctors away so I can sleep as late as possible. I had a nurse come apologize because a resident had snuck past her when she went to go check on her other patient.
I've told you guys, be kind to your nurses. They are your biggest advocates. Or, if you're a jerk, they will ask to be removed from your care team and you'll be stuck with someone new that you now have to start all over with. And word will get out. You'll still receive impeccable care, don't get me wrong. But your cup of ice will be only half full, half melted, and take half an hour to get to you. And honestly, it won't be fully intentional. They have other patients. If you had the choice between checking on a hateful, rude person and someone even totally average in their demeanor and requests, who would you look in on first? Let alone someone like me, who is the very epitome of fabulousness 24/7. It's not even a fair comparison, you guys. I'm just that good.
Usually by 9 or 9:30 at latest, I get myself out of bed and into my chair. Breakfast was delivered around 7:30 and is now cold. The nurse offers to heat it up in their microwave, but I refuse because the chances of me actually eating the gelatinous, semi-dehydrated puck shape that they claim were once grits is slim-to-none. Today my omelette is taco shaped and made from "egg substitute" but does have real cheese folded in like a sandwich. I eat only the middle third, because..."egg substitute." Typically I order cereal for breakfast. (Yesterday for some reason I never got my order taken for my meals, so today I'm getting whatever the "featured" items are.) They have a good variety of cereal and I've made a game out of ordering one bowl of Honey Nut Cheerios and seeing what actually arrives on my tray instead of Honey Nut Cheerios. The first time it was plain Cheerios. Second time it was two bowls of Fruit Loops! But the last time it was one bowl of cardboard tasting, off-brand cheerios called Scooters.
Usually Josh comes by around now, sometimes earlier. (Morning people...*shudder*) He lifts the blinds and leaves the door open for me, so I can see the trees and sky outside. Medicines are doled out and my first dose of Lasix is given via my PICC line. Start the clock, because if I'm not already out of bed, I now know I have about 15 minutes before my bladder will insist on it.
Next I brush my teeth and cleanse my face, use toner, and moisturize using Good Juju Herbal's sensitive skin kit. I brush my hair, throwing it into a pony tail. Once Mom arrives she will help me either wash it in the sink, or dry shampoo it and braid it. Braiding is the easiest, most efficient way to keep it tidy and out of my face. It makes me look like I'm 12, but at this point I'd do a lot to feel the way I did when I was 12. Let alone look that way. (This was the age before breakouts, you guys. Just remember how footloose and fancy-free we all were before puberty...*sigh*)
Today was fun. They happened to be rounding around this time and Josh had left my door open when he left for work, which means I could hear every word of my own clinical assessment. I had to work so hard at keeping my thoughts inside my head. It was very difficult. For example, I did not proclaim, "The only question you need to ask is 'Is she still fabulous?' And yes I am." Nor did I cheer or burst into song when they asked how my spirits were faring. I refrained from doing a happy dance in the doorway when they touched on getting me back outside again before the weather gets too cold. Lastly, I did not blare "Quit Playing Games (With My Heart)" as they moved to the next room. I was very well behaved. It was so borrrinnnnng!
Next I have free time. Just like being at summer camp, except free time is for approximately 7 hours of the day instead of 2. I have options. Read a book. Color in one of my 4 coloring books, using crayons or colored pencils. Do a crossword or word search. Do a jigsaw puzzle. Watch TV or a movie. Play video games on my Switch. Annoy my mother and sister via text as they try to work. I frequently get to annoy my mother in person. Sitting beside me was her first mistake...and now she's stuck playing Uno until we both want to throw something at my shatter-proof windows. At some point someone from Nutrition Services will come to take my order for the next 3 meals. They are super friendly and sweet. I don't have the heart to tell them about the Honey Nut Cheerios snafu.
Lunch time! Same as breakfast, but with different food options.
More reading, coloring, or blog writing. Mid-day I have blood drawn from my PICC line so they can run labs. Sometimes I play music. Today it's a Spotify station based on "Quit Playing Games (With My Heart)," so 90's pop. I've done Best of Broadway, Opera, Classical, Lizzo Radio, Disney Hits, and I have my own personal playlist I created before being admitted for days when I just need to feel like a badass again. I've named it Sick (heart) Beats. Mom usually has mail for me to open at some point, and then she updates my card wall once I've read each of them. As a reminder, since I've had a few people ask again, the address for mail is: Elise Yaussy, 1336 Chadsford Pl., Charlotte, NC 28211. Josh also brings me any cards that are sent to our home address, so no worries if you send them there or otherwise get them to Josh and Lisa!
The big activity for me each day is my walk. I do laps around the unit. Sometimes I wave at the nurses I know in other rooms. Sometimes the ECMO techs sitting outside patient rooms make comments about burning holes in the floor or racing Sonic the Hedgehog. Yeah, I'm that good. My grippy-sock shuffle is Olympic level now. Watch me go!
2PM or so is more meds and Heparin injection.
4:15 my dinner is delivered. Not a joke.
At 5ish I get my second Lasix push.
Evenings are for actually eating the dinner delivered an hour and a half earlier, watching the news, and reading or watching a show for a couple hours. At 9PM I brush my teeth and climb into bed, even if I'm still reading or talking on the phone or whatever. The nurse has another Heparin injection at 10ish and then I'm left alone all the way until midnight when I have more labs drawn to check some of my electrolytes (potassium, magnesium, and sometimes a CBC or a Basic Metabolic Panel).
Repeat this process starting at 5AM with my next Heparin injection...
So. What do you think? Want to join me? I'd say I've lost weight due to the awkward food situation, but let's be real, my mom is an excellent cook. She and Josh spoil me near constantly with nutritionally appropriate real foods all the time. In fact, I think I've got some fresh salmon, asparagus, and rice pilaf headed my way right now...
Until next time!