A Rude Awakening

So much has happened and I want to tell you about it. But right now, I'm angry.

I received the diagnosis of "heart failure" on December 15. At that time, my cardiologist (Dr. Woo) referred us to the Heart Transplant Team at the University of Washington, which is the only hospital in my region that performs heart transplants.

And then Dr. Woo, like almost everyone else in the U.S. went on vacation until January 2.

After a week and a half of waiting, Derek finally got fed up and called them. And while it took another two days, I am happy to report that we have our first meeting with the UW transplant team (or whatever they're called, I don't even know that much) on January 8, more than 3 full weeks after my diagnosis.

So that's great and we're relieved and we assumed that this knowledge would help me to stay asleep at night because I've been battling sleeplessness to the extent that I literally dread going to bed at night. It used to be our absolute favorite time of the day. We would climb into bed, relaxed and happy, snuggle into a wonderful spooning position and eventually I'd drift off in Derek's arms. (Side note: I never thought that was possible until we met. I thought people were lying when they said they went to sleep like that. But being wrapped in his arms feels like heaven and every night, off I'd go to dream land. Sappy, I know, but fact.)

It's not that I have trouble falling asleep, it's that I have trouble staying asleep. And I don't just wake up and lie there, wondering why I can't sleep. I awaken suddenly and violently, very early in the morning, gasping for breath, as if someone has been smothering me with a pillow. Because I can't get any air, I'm in an absolute panic, my mind racing like crazy, often fixated on a certain word or task. The only way to make myself feel any better is to sit all the way up, which I'm reluctant to do because of this crazy idea that if I just stay in a sleeping position like a normal person, I will go back to sleep.

But I've never been a normal person. If I ever actually was a normal person, all of that changed the moment my heart actually began to fail like an untended earthen levy in a heavy rainstorm. So eventually I can't take the lack of oxygen anymore and I sit up and I pant and I gasp. And boy howdy, am I wide awake at this point. Going back to sleep is a near-impossibility. And if I do, in a couple of hours, I experience the same violent awakening again.

Because of the way I was raised, I assumed this was all a failing on my part. It was just another example of me not being able to handle "normal" anxiety (whatever normal might be when you're told that your only option for survival is to have your own heart removed from your body). I assumed I wasn't praying enough. I assumed I was at fault... and so I did no research into what was happening. I thought I could take everyone's advice and trick my body out of this "insomnia."

But this morning's 4 a.m. trauma was the last straw for me and not just because it came after only two hours of sleep. I knew something had to change because the word that my brain was fixated on in those dark, breathless moments was: Moribund.

The weird part of this (as if it isn't all completely bizarre) is that as my mind was racing and repeating that word over and over I was horribly confused because I had no idea what that word meant. I could remember seeing it/reading it before, but it was one of those words I don't think I've ever heard anyone say aloud and so finally I looked up the meaning:

mor·i·bund

môrəˌbənd/
adjective

(of a person) at the point of death.

synonyms:dying, expiring, terminal, on one's deathbed, near death, at death's door, not long for this world"the patient was moribund"

Soooo... yeah. Maybe I did know the word after all. Maybe my subconscious was screaming it at me for a reason.

This revelation prompted me to do a little research... and it turns out that what I'm experiencing is a common condition that affects people in heart failure. It's called Paroxysmal Nocturnal Dyspnea and it has nothing to do with anxiety management or lack of prayer. It has to do with the fact that, while my breathing may be fine at the time I go to sleep after carefully managing my fluid intake and taking all of my meds on schedule, after I fall asleep and lie "flat" (with my head propped on two down pillows), my body cannot handle the fluid build up that this "normal" position causes in everyone-- and so while your heart deals with it and you sleep, my heart can't. Fluid builds up around my heart and lungs and this continues until my body violently wakes me because I'm quite literally suffocating.

All the sleep aids in the world will not help. All of the guided meditation I've been doing, the lavender baths, the white noise... it's all pointless. And all of the time I've spent beating myself up for not being able to handle the "anxiety" has been nothing but undeserved self-loathing that has just made me feel even worse about a situation that I didn't think I could possibly feel worse about. The only cure is to sleep upright. And while we actually have a hospital bed on its way, I've been very reluctant to get into one because of how often people fail to get back out of them.

And so here's the angry part:

WHY DIDN'T A SINGLE MEDICAL PROFESSIONAL ON MY HEART TEAM WARN ME ABOUT THIS?

I have been in a literal No Man's Land for two weeks now. My own cardiologist had to hand me off to another team and that team has no idea who I am yet. AND THEY ARE ALL ON VACATION.

Could someone not have sent me a URL? Handed me a pamphlet, suggested this to me when I told them by phone that I was having a lot of trouble sleeping?

So yeah, this morning, I'm angry. 

And the one thing that has never failed to comfort me in times of trouble or loss-- lying in Derek's arms-- that is no longer an option.

9 days. I just need to get through 9 more days.