The Door Keeps Opening.

Labs Monday. Vote and labs Wednesday. Transfusion Thursday. A sleep study at the wrong flow rate, tanks that run out mid-errand, four different answers on the same protocol, and one extra needle that didn’t have to happen. The door keeps opening. She keeps walking through it.

It is Sunday night. Raining. A rainy few days ahead, which is inconvenient — Little Sally needs attention and four wooded acres are begging for quality time. But we need the water and it is just the way it is. The girls have been spending a lot of time on their front porch because the hive is sweltering and honey production slows in the heat — but that is another blog for another day.

I can think of no better weather to frame this week. The dread of labs first thing Monday, and then maybe a transfusion sometime in the week — maybe they will call, maybe they will try to work around the other five appointments already on the calendar. The closer Monday gets, the more the anxiety swells. She has been miserable since last Monday. Who knows what the hemoglobin actually was by transfusion day — four days after the draw. She had energy for maybe half a day after the blood finally ran, and now she can barely walk across the room.

We already know what this week holds. We will juggle. We will jump through hoops. We will navigate a system that treats a predictable, repeatable, documented weekly medical need like a surprise it has never encountered before — with no sense of urgency, and a patient who can barely walk, talk, think, or eat, and whose O2 drops because hemoglobin is the magic sauce in the blood that actually carries the oxygen.

If only there was a way to just — schedule it.

Labs. I win. Again.

I guessed 7.2. Melody guessed 7.4. It came back 7.2. Her optimism is one of her most consistently documented traits. I remain the more accurate diagnostician in this household — which is impressive given that I also locked my gate Monday morning without my keys and stood in the driveway contemplating my life choices. There is a reel about that. We are not all operating at full capacity over here.

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Sleep study was Sunday night. Out at 5:30am Monday with time to kill until labs opened. Meal first — you can guess where at that hour. Then a major retailer, two items I cannot find anywhere else, nearly the whole store to myself, no cart-blocking employees on autopilot, overstimulation at a minimum. Which was good since I had not exactly slept the night before. Then labs — already in the area, may as well knock them out early. Because if we get labs done as early as possible, treatment will be scheduled as early as… possible. Right?

Naw girl, we a community infusion center. We gonna get you in when we can. Just settle down.

We already knew.

We have turned the weekly labs into a game. Before anyone writes in — we are respectful of the situation. We live it. As a famous poet once said, “if we didn’t laugh we would all go insane.” Bonus points if you can name the poet.

The body had been announcing the number since the weekend. Sure enough. Transfusion needed. Scheduled for Thursday. Three days. Technically a few hours past the lab draw time, so into the fourth day — technically. That technicality gets glossed over, but “policies, processes, protocols” is always the go-to answer for anything outside the checklist. Labs Monday revealed a life-saving urgent treatment is needed. Thursday. Seven days of misery by the time the blood actually flows. Piedmont Henry takes such exceptional care of their patients. Especially quality of life. So focused on a patient-centered model, it simply amazes me why everyone isn’t transferring care to Piedmont Henry.

Here is where it gets interesting. And by interesting I mean uniquely, specifically, impressively stupid.

A type and screen carries a validity window. The gap between Monday’s draw and Thursday’s appointment exceeds the Piedmont Infusion Center’s protocol. I already knew this — I left a message with the doctor to confirm, given the inconsistent answers this center has produced. She called back to verify. A minor detail that neither the infusion center nor the doctor’s office thought to flag. Good thing the patient’s family has spent considerable time learning their own processes and procedures — otherwise she shows up Thursday and gets turned away from a life-saving treatment because of an expired lab they scheduled themselves.

This infusion center — the one that is a department of Piedmont Henry Hospital, that one — operates on a different T/S protocol than the hospital itself. Different from the Piedmont Henry ED. Different from Piedmont Fayette’s infusion center. Different from Piedmont Fayette Hospital. Different from Emory, where transfusion-dependent patients are scheduled consistently and the protocol is the same across the system. Except Piedmont Henry Infusion. Or Piedmont Infusion. Infusion Center? It is genuinely unclear what they are, which may explain a few things.

I want to be fair. This is, after all, a system with a published Promise.

Noted. Filed. Outstanding evidence.

Tuesday. She was out. I had the house.

Melody was with her mother — which sounds unremarkable until you understand that a trip to the bins store is the only hobby, relaxation, or vacation she gets. The rest of the time is lethargy, treatments, or examinations. Oh, and calling to beg whether she is worthy of a blood transfusion while she is still conscious.

I had a window and I took it the way a caregiver takes any window — immediately, before it closes. In some circles we call them targets of opportunity. I had recordings and other work to do, but it is not often I get to do the dirty gritty work that brings real satisfaction. Plus the pure joy Melody has when she comes home and sees progress.

Dusting. Sanding. My ongoing war with hydrogen peroxide in three key areas of the house. The kind of cleaning I avoid when she is home because every environmental variable is a variable I am actively managing — her breathing, the air quality, all of it. Rainy day chores. The ones that only happen when the conditions are exactly right, which in this house means when she is not in it.

There is something I cannot name about that kind of day. The overdue task finally seized. Dopamine hits for completion. A few Saturdays ago an ED visit cleared the schedule sideways and I cut sections of the property, inspected the bees, sorted accumulated junk — one of the best days I have had in recent memory. The details are not the point. The feeling is. Almost energizing in a way that probably has something to do with being AuDHD and finally getting the right task at the right moment. Almost like sex, as well as I remember what that is like anyway.

Some guys have the boys over for poker. I get excited about sanding a wall.

Many empty nesters travel. Garden. Join card clubs. Us? Melody tries to stay alive. I watch her take five steps and stop. But Piedmont Henry cares so deeply about her quality of life — usually about ten days between transfusions for a patient who needs one weekly. Very patient centered. As evidenced.

This is caregiving from the inside. This is what living with chronic illness looks like for everyone in the house — including the bees, who sometimes have to wait because the wall needs attention first. Sometimes they eat all the honey during the dearth and I get very little. Life with chronic and terminal conditions.

If only there was a way to schedule a life-saving treatment in advance for a patient who has a demonstrated, predictable, weekly need for it.

Community infusion centers are not the place to go if you are sick. They are a great place to go for a B12 shot, or iron infusion — somewhere that feels more like the staff at a hipster coffee shop than a medical facility, one that constantly cites protocols, processes, and of course, the system.

Wednesday. Vote. Labs. Dialysis.

Wednesday meant a stop at the pulmonologist on the way to labs. I stopped in — innocently — and asked what we were doing wrong with the O2 tanks, since they last about an hour in practice because they arrive not fully filled. She had already run out once that week. The rep had just left the practice, so they called him and we did not hear back immediately. We moved on, voted, went to labs, and headed home.

The lab tech at Wednesday’s draw — not Thursday’s infusion, Wednesday’s labs — had a card. A stack of them actually, a physical reference card that the infusion center apparently does not have, or does not read. Per that card, T/S validity is fourteen days. Because of chronic anemia. Because transfusion-dependent patients should not have to wait so long for blood that their hemoglobin drops daily. She was prepared to call the transfusion center directly and educate them. She herself thinks Melody is there far too often for a T/S — she is the same tech who has only blown a vein twice in about five years. I have gotten the sense from the hospital and practices that the infusion center is its own thing entirely, which may explain why they are chronically short-staffed, or why some providers quietly encourage Piedmont Fayette instead. The DaVita clinic will not contact Piedmont Henry’s Infusion Center at all. Her nurse said plainly: “they are a pain to deal with and it takes a week to get the orders in right.” That was summer of 2025. Nothing has changed.

Four different answers. One patient. Same hospital system. Patient centered.

That extra hour at labs on Wednesday? For a body running on low hemoglobin and limited O2, that is not an inconvenience. That is a jog. She needed to sit down after.

She voted anyway. She insisted. Then dialysis until 8pm — because the infusion center’s 48-hour dialysis requirement does not pause for the rest of life happening around it. Never mind that an unnecessary lab visit added an hour she did not have to spend.

This is what the day before a transfusion looks like.

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Thursday. Transfusion. Finally. 12:30.

The pulmonologist’s rep had called back. We stopped at the O2 company on the way in — she had about an hour of air left. I had not heard back yet so I stopped in directly, asked the same questions, and they authorized six tanks instead of three. That is considerably fewer trips, and enough lead time to actually call ahead and schedule a pickup instead of engineering it into a route around a transfusion. That has been the problem — tanks arrive next day, and there is always an appointment. You build the errands into the map and you move.

Second type and screen. An hour wait. Then the new system rollout — and consistent with everything this series has documented, the training appears to have been optional. “I need to give the patient medicine, the system won’t let me. Let me make four calls to get someone to fix it.” Short staffed again. Two nurses running the full roster. They also had to leave the building to retrieve the blood after everything else was finally processed.

What is another hour after four days.

Blood flows at 13:55. One hour and twenty-five minutes past the scheduled time. If only there was a way to have known this was coming. To have drawn the labs at the right time. To have scheduled the appointment within the validity window. To have had the system trained before the patient arrived. To have had the blood ready.

There was a way. There always is.

The door. The system. The many hands between provider and patient.

It opens. And closes. This is life with chronic illness. This is terminal.

The sleep study scheduled at a flow rate already superseded by her own pulmonologist — because protocol is protocol, mostly for insurance, and clean diagnostic data is apparently secondary. The concentrator three months away by insurance calendar, confirmed while she ran out of air mid-errand. Four answers on one protocol at one hospital. One extra needle from a scheduling gap they created. Tanks picked up on the way to a transfusion because the system cannot get ahead of a weekly need. Dialysis until 8pm the night before. A vote cast on a body running on empty, because she insisted. Two O2 runs in one week, and it was a light week.

The door keeps opening. She keeps walking through it. The system on the other side keeps being exactly what it is.

If only there was a way to have known this was coming.

Chronic illness.

Friday. The call.

It came as a surprise — which tells you something about how low the bar had gotten for this week. The O2 company called. A portable concentrator was on its way. The machine that does not need refills. The one that does not require warehouse runs. The one that does not run out mid-errand or on the way to the tank exchange. The one she can actually use for errands instead of a big tank that may last an hour or may last four, depending on how full it arrived.

After that week — and the other blessings Friday brought — this was delivered on a Friday afternoon. Praise be to God. It may seem small. It is not small.

This may be the last week we have to deal with this particular chaos. There is more coming — something bigger than the concentrator — and it is going to get its own space next Wednesday. You are going to want to be here for it.

Drop your guess in the comments.

Paul: 7.2 · Melody: 7.4 · Actual: 7.2 · Paul wins — again.

Next week — what’s your number?