Mostly written at dialysis on Monday, January 31
This is just an exercise for me to complete at this point. While at dialysis treatment this afternoon, I’ve completed my Press-Ganey survey that one usually gets after treatment at Duke. I left a lot of “poor” grades along with explanations. There’s no way to right these wrongs apart from sincere acknowledgments that there were, indeed, wrongs. Hospitals and doctors don’t do that. The best they tend to offer is something patronizing like, “I’m sorry if you feel that the care you received…”

[ Part 1 | Part 2 ]

Monday, 1/24, 2:45-10:00pm – Apart from a five-minute initial triage, I’m in the Duke Hospital Emergency waiting room for seven hours. There is no sense that my surgeon has prearranged anything. Given that my condition is not acute, there is no reason to expect I’ll ever be at the top of the list, particularly as the afternoon wears on, and the ER becomes more crowded. I am familiar with long ER waits, but I had been anticipating more of a long wait on the inside. If I have a bed and my painkillers, I’ll be ok. Sitting outside the ER, regardless of the shiny remodeling job Duke has done in recent years, is not conducive to the rest I need two-days post-discharge.

I call my surgeon’s office after a couple of hours, before it closes, and I let the surgeon’s assistant know there has been no knowledge of my impending visit. It seems clear there will be no staff on hand to address the issues specific to my surgery and post-op condition.

Within an hour, I have a visit, still in the waiting room, from one of the interns on the surgeon’s team. I am glad to see him, even though he was the same dick who had told me following my surgery that I was fortunate to be on dialysis since my right kidney hadn’t begun to work and, perhaps, would not work. He tells me that I’ll likely get a chest x-ray once I’m seen, but his cameo appearance don’t speed much along.

10:00pm-3:30am – No visit from any staff for a half-hour. No nurse. ER doc visits at 10:30. Nurse is basically AWOL for the next five hours. Over the next four hours, I am visited by a few very clueless docs and sent for a chest x-ray in a freezing cold area. I am given hints that I’ll be sent home, but my fever spikes–I am convinced by the x-ray visit–and told I need an abdominal CT.

Despite literally hundreds of verifications made and personal declarations given over the years at Duke that I am allergic to IV-contrast dye, my top-notch ER team plans to give me my scan with contrast. They seem annoyed when I tell them of my allergy, which causes anaphylaxis. They openly ponder taking measures to deal with the allergy, and I protest. I’ve had numerous CT scans performed where the doctors would’ve preferred an image with contrast but would not take the risk. Even if corticosteroids are given to counter the allergy, the contrast is known to wipe out remaining kidney function in people with renal failure. (I doubt they even considered this; I’m just remembering this now as I write this.) Finally, they back down, and I just have to drink 900 milliliters of wonderful banana-flavored barium sulfate shake.

So, I had a CT scan, and eventually, I was readmitted and brought back to my old room.

During this whole time, in fact, since 6:30pm, my friend J is with me. He’ll stay all night and not go home until sometime around noon.

Tuesday, 1/25 – This is mostly a continuation of the aggravation I experienced a few days earlier, except I feel much better. I can breathe. I can get up. I can eat solid food. My GI system still isn’t working so well, and that’s the focus of my stay. I have dialysis upstairs. The dialysis unit is relatively relaxing and staffed with quality techs and nurses. But then I wait literally an hour for my transport back to my room. I don’t recall what prompts me to post on Facebook:

There is no end to the incompetence at Duke that prevents me from getting treatment one would expect here.

Wednesday, 1/26 – My CT hadn’t shown anything alarming, so the only think keeping me is a recurring fever. I have to have dialysis again, in order to get back on the MWF schedule that was thrown by my ER visit on Monday. I have more aids to help move my GI system along. I continue to be baffled by oversights that are not such a big deal because I know how to work around them but seem like they’d be spectacularly tragic if they were to occur with a different patient with a poorer prognosis.

For instance, I have been told for several years, particularly since going on dialysis, how critical it is for me to take my phosphate binder pills with all of my meals. This is a given for dialysis patients. Yet, despite numerous reviews of my medication list and numerous reminder by me, the patient, my phosphate binders are never added to my medication list. Whenever I receive a hospital meal, I dig into my own medication bag and grab some pills.

I am absolutely not supposed to take any of my own medications while in the hospital. However, I am told that a pharmacy order takes about an hour. My phosphate binders must be taken *with* meals, not an hour later. Again, I repeat this issue no less than a half-dozen times between my two hospital visits, and the issues remains across both of my stays.

You simply cannot trust Duke to give you the medications you’re supposed to have. Of course, such advice could be fatal to anyone who brings their own meds and can’t remember which ones they’ve given themselves and which ones Duke has given them.

Anyway, I want desperately to get out on Wednesday, and I do get discharged around 6pm.

I thought this third entry in the series would do it, but it seems a natural break, to stop right after my discharge. I’ll write one more entry to get caught up on how recover has been going.