The Cut of My Jib
I once had a dream in which I was a sailboat. I was made of wood and my hull was painted a lovely shade of sapphire blue.
While it was not the first dream in which I was something other than human (I once was a giant Russian cosmonaut caterpillar, but that's a story for another day), it was the first time I ever dreamed that I was an inanimate object. In the dream, there was no wind and I was drifting listlessly with furled sails on giant and turbulent waves in the middle of a vast and leaden ocean. I was powerless and rudderless and hyper-aware that a big, angry and dark gun-metal grey battleship was hunting me. Each time an enormous swell would lift me, I could see the malevolent battleship in the distance, getting closer with each glimpse.
I felt like that sailboat again today.
In the early afternoon and after a quiet morning, I was following The Boy around into the garage and down into the basement as we discussed different DIY shelving/desk ideas/projects (because of course this is the perfect time for DIY projects). As I quickly skipped up the steps to our back door, I was thinking to myself what an impostor I am, how utterly ridiculous it is that I need a new heart when I'm able to move around so well. Shouldn't I be completely incapacitated? Shouldn't I feel miserable?
Then I sat down with my laptop to look at furniture for the newly-finished basement (because why wouldn't one shop for sectionals at a time like this?) and gradually I started feeling... miserable. And since there is almost no information out there about what it feels like to experience end-stage heart failure (and only once source for how it feels with my particular failing heart), I thought I would try to capture it here.
The first thing I noticed was extreme fatigue. I have searched for the words to explain this for months and cannot seem to convey it, but it isn't really like a weariness in my bones. It's like a weariness in my head. When I say that, what I mean in a very real way is that the place where everything that is me lives inside of my brain, my God, it's just really tired in there. As I sat and just allowed myself to feel that, I noticed I could hear blood swooshing through the veins in my ears. I've had this before so I knew I was experiencing pulsatile or vascular tinnitus, caused by a disturbance in blood flow. I let my mind continue to sort of check the systems of my body and realized that my hands and feet were freezing cold and that I was taking very shallow breaths.
I told The Boy I didn't feel well. He sprang into action, sprinting up the stairs to get the blood pressure (BP) cuff. Honestly, I didn't ever envision a time in my life that I would wish for both an upstairs and downstairs BP cuff, but here we are.
The final thing that I was feeling was this ongoing visual and mental perception problem that happens that is incredibly difficult to describe. Sometimes, it means that if we are sitting or standing together chatting, my field of vision will focus in on your face while everything around your face becomes a swirling mass of black and gold dots. It's less fun and psychedelic than it sounds. I have to concentrate very hard on your words while my brain is screaming YOU HAVE TO GO LIE DOWN but I really don't want to go lie down because I like talking to you. Sometimes it means that as I am sitting on my couch and look around my living room, it feels as though I'm inside of someone else's head and manually moving it around and looking through their eyes at everything-- like I'm using a tower viewer-- and nothing looks quite right. Sometimes there are halos around all of the lights, like when you spent all day at the pool when you were a kid and looked at the street lamps on your way home and they would glow from the prolonged chlorine exposure to your eyes. Sometimes it's both.
Anyhoo, my BP was 78/47 which really isn't that special. For frame of reference, last night when we went to bed it was 66/45 and neither of us even batted an eyelash. And as a side note, yes of course I use apps to track my blood pressure, my weight, my INR (the clotting tendency of my blood), every calorie of food I consume and every ounce of water I drink because I am basically the perfect heart transplant patient and if my doctors need answers about what's been going on with me, baby, I've got 'em.
The Boy draped a soft blanket around me and set a space heater at my feet. Boo (the black lab) promptly laid down on my feet, and while it was probably because of the space heater, I like to imagine he was trying to help as well. I breathed. The Boy had massive anxiety and tried not to tell me about it. He offered to take me to the hospital and I told him that I was fine. He looked at me dubiously but then we all just waited for a little while.
Based on my recent hospital experience, during which I was connected to a cardiac monitor which alarmed almost constantly, I'm going to surmise that these symptoms are all from something called Premature Ventricular Contractions (PVCs). Almost everyone has these from time to time-- if you've ever felt your heart "skip a beat," that's probably what it was. But I'm having more than 44 of them per minute. So if my resting pulse is 80 bpm, I am having an extra/irregular beat with almost every other heart beat, and it takes its toll. Me and my heart and that place inside of my head... friends, we're tired.
And then almost as suddenly as I felt miserable, I felt better. Pudding was consumed (and calories tracked). The metaphoric sun began to shine and sparkle like diamonds across a calm sea. This little blue boat unfurled her sails and let the wind do its magic. And the battleship? Well, she just disappeared.
I don't have the luxury of believing she won't be back. She's popping up more and more often these days and soon this little boat may have to live in the safe harbor of the CCU. And you guys, that's just not where boats belong.
Unless we get The Call, my next UW appointment is this Thursday.