Wife Wednesday Episode 10
Getting in the door, staying alive once you’re through it, and the paperwork that follows you home. Three fights in one weekend, and only one of them ends in a letter instead of a discharge form.
Last week (catch up on Episode 9 here) I left you at thirteen hours into a transfusion, and counting. What I didn’t tell you is that getting to that transfusion was its own small war. Getting through it was another. And once we were finally home, a third one showed up in the mail. Same weekend, three different fights, one exhausted couple.
Fight One: Getting In the Door
It was a rainy, stormy night — praise be, we needed the rain, Georgia’s been dry — and Melody hadn’t eaten all day. That’s not neglect, that’s neurodivergence doing what it does: when there’s an appointment looming, no matter how far off or how late, it swallows the whole day. Nothing else happens until it’s handled. So we detoured for her safe food, and buffered an extra hour into the drive for the crime of it being Atlanta, in rain, on 285. If you live here, you already finished that sentence for me.
An ND thing, for anyone who doesn’t run this way: when there’s an appointment on the calendar, it doesn’t sit quietly in one slot of the day. It takes over the whole day, no matter how far off or how late it is. Everything else — eating, plans, focus — orbits it until it’s done. So we buffer. We left an extra hour early specifically to not be late. We were still late. The buffer wasn’t wrong. The day just doesn’t care about the buffer.
The wait for food: forty-five minutes. Then the last traffic light before the freeway was dead entirely — not blinking, just gone — turning a four-way stop into a demolition derby audition. Add another thirty minutes. We rolled in late, worn down before we’d even found parking.
Here’s the part that actually matters: once you clear all of that, what’s waiting inside is not the general chronic-illness gauntlet. No ED waiting room, no performing your symptoms for a stranger to decide if you’re sick enough. Just a room, held, for her, at a scheduled time. That’s genuinely rare. It’s just not the same thing as easy — you still have to survive the drive to get the privilege of it.
Fight Two: Getting Through It
The mechanics, for anyone keeping score: Melody’s blood pressure is a genetic and pharmacological group project. The medications managing her heart rate and opening her arterial volume are fighting arteries that are, in places, just straight-up calcified. Now add a transfusion, which reliably pushes her pressure up 30 to 60 points — average 40 — onto a baseline already sitting near 160 the second she walks into any facility. The only new variable this time: she’s been living at a pain level of 6 to 9 every single day lately, and it turns out that’s not neutral for blood pressure either. Who could’ve guessed. Everyone. Everyone could’ve guessed.
We were there over twelve hours. The blood itself was the easy part. The blood pressure — 230 is apparently where “health and safety” starts caring — was not. She hadn’t slept the night before, which stacks its own tax on top. So most of those twelve hours weren’t spent on a redundant type-and-screen or getting re-explained to by a rotating cast of nurse-then-NP. They were spent waiting for her body to agree, eventually, to calm down — pain medication doing the actual work, nobody hovering with a threat dressed up as a suggestion. It ran long enough that I canceled church. I was not delivering the Word in the frame of mind I had left in.
Worth knowing: Melody has a genuinely high pain tolerance — liver transplant, kidney failure, more procedures than I can count. Whatever number she says out loud, add two to get the real one. Assume it’s been that number for longer than she’s told you.
Somewhere in that stretch she said, mostly to herself, “if this bone pain means my hemoglobin is more stable, I’ll take it.” Sit with that for a second. A seven out of ten, chosen, gladly, as the better deal.
We left the ICC around 9am Sunday. Technically we saw the sunrise. She just had the wrong side of the room, and there are no windows anyway, so we powered through the concept of it. And if you’re watching from another provider thinking, oh, so you all do long transfusions too — no. The only thing this shares with the 23-hour one is a pint of blood. Prep went smooth, almost like they were expecting her. (They were. Scheduled slot. Transfusion-dependent patient. Not a mystery — a calendar.)
Then, because the universe has a sense of humor, Sunday was also a dialysis day. We’d spent the whole night before floating a genuinely funny bit: get home, nap, then handle dialysis ourselves. Reader, there was no nap. HHD doesn’t wait for anyone’s plans — we were setting up and running it considerably sooner than intended instead. One long day, needing its own separate recovery — ordinary exhaustion, the kind anyone my age earns honestly, stacked on top of the sensory overload that comes standard with how I’m wired. Two different bills, both due at once, no discount for paying together.
An Intermission, Shorter Than Expected
We knew Monday would be short — she’d just had a transfusion the day before. Boy, were we surprised at how much shorter it turned out to be.
The early arrival time was the only real hardship, which under normal circumstances would be plenty. Labs first, then presumably infusions and another transfusion. We had an hour to burn, so she got a well-earned mocha latte and I nursed a chai, contemplating efficiency like it was a personality trait I might one day develop.
They took her vitals, disappeared a while — we’d already seen the labs post — and then called us up front: “we don’t have anything for you today.” We were stunned, though not about the blood; we knew that wasn’t coming, not 24 hours after her last unit. But no infusions either, because her hemoglobin was, for the first time in at least a year, over 10.
Over 10. Write it down. It does not happen twice.
Fight Three: The One That Comes in an Envelope
While all of that was unfolding, a letter arrived from Piedmont — the reply to a formal complaint I’d filed a while back. Gist: we looked into it, we’re making changes. It also disputed our count of how many times a wait ran past 48 hours.
Good. Dispute it. I’ve got patient records, dates, times — and photos, which come with their own timestamps whether Piedmont wants to argue about the clock or not.
This is the part nobody puts on a pamphlet. Advocacy isn’t a phone call and a shrug — it’s paperwork answering paperwork, indefinitely, while you’re also managing a blood pressure of 230 the same week. Three fights, one weekend, and only one of them ends with a letter instead of a discharge form. Consider this the opening exchange. There will be more.
Next week: the next Emory day, which somehow still ends up back at the ICC.
