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Waiting Game

While I have you all at my mercy, I want to take this chance to once again remind everyone to be kind to your nurses. I have several excellent, highly skilled doctors...that I only see once a day at best (because I'm holding steady, with no need to make and monitor any changes.) My nurses, however, I rely on for so much. And they're always so gracious and smart and helpful. Sometimes you get grumpy. For whatever reason. And you're allowed to be sad, or mopey, or irritable. But you don't take it out on your nurse. Or your nurse assistant. Or the person who comes to clean your room every day. Or the person restocking your room supply cart. Or the super sweet older gentleman that is the Procurer of All Things for the unit.

I'm in for the long haul, you guys. The duration. I could literally be in here months. It would be unwise to piss off any of these people because they care for my daily needs. Which are directly linked to my soul. I'm being dramatic, but it's true. Being treated with dignity and respect means more than people realize, especially when you haven't bathed in days. Or have to ask for help getting out of bed or going to the bathroom. Or even something as simple as asking for a cup of water. Not feeling like a burden is already something I struggle with because I have no true purpose while I'm here. There's nothing for me to do to help contribute to the world and that's really hard on a person's self-esteem and self-respect. So nurses and daily staff that help you mitigate those feelings are, in my opinion, more important than the doctors that decide your treatment regimen. The latter would be pointless without a healthy mind and soul cultivated and tended by the former.

So this post is dedicated to: Connor, Robyn, Sandie, Hallie, Vinny, Thomas, Erin, Sarah, Tom, Pam, Celeste, and Freddy.

Now. After my PSA, here's my update. Everything is holding steady for me. I'm on drips of epinephrine and milrinone. I get lasix pushed a couple times a day to keep the fluid out of my heart and lungs. I get potassium a couple times a day to replenish what I'm losing to the Lasix and I get Heparin to prevent clots.

I also have some really big, fun news! I was officially added to the UNOS transplant list. My team knew I easily met the conditions to be listed as a status 3 (remember: 1-6, with 1 being "needs a transplant right now" and 6 being least urgent). However, they wrote what is called a Letter of Exception to get me moved to a status 2 because some of the things going on with me are actually worse than they appear. My body has been dealing with some of my weaknesses literally since I was born, and has adapted to make up for them, which is why I'm still seemingly high functioning. But also due to those same congenital issues and subsequent surgeries, there aren't many options for mechanical assistance devices to help my heart pump better. So the big news is: they approved the Exception and bumped me up to a status 2! Needing a heart more than you did the day before normally isn't good, but now we're allowed to celebrate these things. It's the wild, wild west guys. We make our own rules! Except for trying to leave the unit without your monitors and a nurse. That's still totally frowned upon.


In other news, Mom and Josh spend almost all their time here with me and working remotely. Because they're badasses that have highly developed time management skills. Unlike yours truly. So right now, they don't need food deliveries or care packages. Storage is at a premium here in Casa de ICU. Thank you for asking about Mom and Josh and Sam and wanting to give them things, but I am assured that they are all well stocked in wine and candy. I'm still on a special diet, so I can't have much, either. Though I love cards, jokes, good stories, and well-wishes. I have been putting them up on my walls, so send those! (Elise Yaussy, 1336 Chadsford Pl., Charlotte, NC 28211) But food, toys, and flowers are sadly impossible to accommodate right now, in this specialized ICU. They've got rules, you guys. "Important rules that are there for my safety and the wellbeing of my fellow patients." So yes, bedsurfing while singing Broadway tunes is also not on the approved actions list of things-to-do-in-the-ICU. Giving cards and notes of thanks to your nurses, however, is definitely approved. Maybe I will do that as penance for catapulting my peas at the trashcan with my spoon...

❤️ Elise

PS: View from window in the hall outside my room.

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