Wednesday, June 26, 2019

More Medical Mayhem

[Originally posted at LiveJournal]

There was one... uh... interesting part of my last hospital visit that I didn't talk about in my previous diatribe: the dialysis fiasco. See, I was supposed to be what they refer to as an "urgent start", so while I was in the hospital, my kidney doc arranged to have my PD done in my room. Some guy who we had never seen before came in with all the equipment and supplies, introduced himself and asked if we minded if he used me to train the new guy. We told him that was fine as long as we could listen in because we needed to know about this thing as well. He explained that the equipment we would have at home would be different, but they all work more-or-less the same way and any differences would be mostly cosmetic.

So we got a quick rundown of terminology, how the system worked, what problems can come up, how to fix some of the more common alarms, etc. Then they left. Things went OK that first night; we had a couple alarms, but we knew what to do. Which turned out to be most fortunate, because as we learned from our night nurse, once the two gentlemen left, there was no one in the entire hospital who had any knowledge of PD, and it wouldn't have mattered even if they did: the equipment belonged to an outside company and hospital personnel were strictly forbidden to even touch it.

I thought that was an odd way for a major hospital to do things, but what do I know? We muddled through the next few nights without major incident. The occasional alarms were annoying, but we were able to deal with them. And then my last night in the hospital everything went all to hell.

First, the guy who came in was not any of the ones who had come in before. He was obviously in a big hurry, which means he had problems getting the machine set up. No surprise there; all equipment has a built-in detector that increases the likelihood of a malfunction in direct proportion to how much of a hurry you are in. He finally gets the thing working, then goes running out the door before the first step had completed. The other guys always hung around for most of the first full cycle just to make sure everything was good. I thought maybe he had someone in another room to get hooked up or something.

Anyway, we started getting alarms almost immediately, and not the ones that we knew what to do anything about. We double-checked everything we could think of to check, but no joy. Alarm after alarm after alarm after alarm. The nurse called the guy to have him come check it out.

The son-of-a-bitch had left the building! By the time our nurse made contact with him, he was already an hour from the hospital on his way home and refused to come back. He said the only thing he could suggest was to mute the alarm and wait until someone came in the morning to unhook everything and see if they could get things working.

No. Fucking. Way!!!

I was supposed to be discharged the next morning. The total time on the machine was close to eight hours, which would have meant another day and night in the hospital. I was done! I wanted to get home!

We kept poking at the thing and nearly 10 hours and 30+ alarms later, we finally got through the entire process. I felt bad for anyone in the rooms near mine. The damn alarms were loud as hell and they were going off every couple minutes at one point. I was so pissed I had decided that if I ever saw that ass-clown again, I would tear his head off and shit down his throat. Fortunately, someone else showed up the next morning to unhook me.

Now that I've had some sleep and knowing what I know about the medical-industrial complex, I'm willing to give the SoB a bit of a break. I still don't appreciate the whole attitude that my health and well-being are unimportant, that I'm just a "consumer" of healthcare "services" and deserve no more consideration or respect that someone "consuming" a box of Goobers.

However, if SoB's company operates the way most others around here do, he isn't considered an employee, but an independent contractor. Which means that he is probably paid some flat amount for each dialysis patient he hooks up while having to use his own vehicle and gas to drive all over Pasco County. The flat amount probably sounds like a lot of money until he subtracts out vehicle depreciation, maintenance, gas, paying the full amount of his Social Security (double what is withheld from your paycheck), health insurance, additional car insurance (it's now considered a vehicle for hire), and a long list of incidentals. All of which means he's likely making less that he would flipping burgers for minimum wage, and explains to some extent the bitchy attitude.

But what I'm most interested in is how all this works from the hospital side of things. Here I am, an inpatient of Advent Healthcare of Zephyrhills, squirming around on my plastic bed because of the giant sore on my ass (which two months later still has not healed...) hooked up to a machine that no one in the building has any knowledge of, and will be fired on the spot if they so much as touch any part of it. Now what happens if I code? Not impossible. After all, the primary reason I was in the hospital was sharp stabbing chest pains. Would everyone just stand around the bed and watch me die while the night nurse argues with SoB about getting his ass back to the hospital? Would they try to revive me while working around the machine and the hundreds of feet of plastic tubing sprouting from it and connected to me like some giant plastic squid, knowing that touching any of it meant instant job loss? What if the machine were to malfunction and catch fire? Just let it burn? Or would the night nurse risk her career to unplug it and hose it down with a fire extinguisher?

(Yes, I'm being sarcastic, but only sort of. I'd really like to see whatever written agreement that exists between the hospital and the dialysis company. I can tell you that every hospital employee that came into my room while I was on dialysis treated the equipment like it was infected with ebola. I'll bet there are stories....)

Is there anyone reading this that doesn't think this is a stupid way to run a hospital? It's so stupid, in fact, that it has to be deliberate. The only reason this could exist in a rational universe is that someone, somewhere is fattening up their off-shore bank account. Maybe News Channel 8's crack investigative team can take a break from chasing cockroaches around mom&pop restaurants and go hunting the giant cockroaches infesting our health care system.

And I'm sure all those paid advertisements from the major hospitals that run every 5 minutes day and night on their network will not have any influence on future news stories, cuz you are all so full of integrity and stuff. Full of something anyway....

Saturday, June 08, 2019

More Medical Malpractice

[Originally posted at LiveJournal]

So it's been close to forever since I've posted anything. That's mostly because I can't seem to stay out of hospitals and doctor offices. It appears that my kidneys decided that 54 years of steady work was more than enough and retired from service. It was decided (not by me) that I would go on something called peritoneal dialysis. (That article talks mostly about the old manual method of doing PD. I have a machine that does all the work while I sit in front of the TV or sleep in bed.) Getting the catheter implanted, dealing with all the related kidney failure crap, training, home visits, equipment and supply deliveries, etc. have pretty much taken over our life.

Of course the worst has been dealing with asshat hospital bureaucrats, clueless doctors, and general dumbfucks who seemed determined to waste our time and piss me off.

Now, I need to make a disclaimer right up front; nothing that follows is in any way directed at the front-line people out there that get paid shit to deal with long hours, broken equipment, craptastic software systems, and shitty bosses. Nurses, techs, clerks are the unsung heroes of the Republic, navigating through a minefield of rules, regulations, silos and managers who, if they think of patients/clients at all, place them far down the list of priorities.

We'll start where I started: AdventHealth in Zephyrhills. Utter chaos is probably the best description I can come up with. Of the eighteen doctors coming in and out of my room all hours of the day and night, none of them seem to have the first clue why I'm there, who is running what tests and why, what the results of any of those test are, whether or not I'm allowed to eat and/or drink anything at that particular moment (and if not, why?), and most importantly, why, when every single one of my eighteen doctors says I can go home, am I still laying here in this gods-awful bed with IV's stuck in my arms!

Every time I end up in that place, It takes me a week to recover. The main problem is that it is impossible to get any sleep. Hourly vitals checks, daily blood draw at 4am, the malfunctioning bed alarm on the poor old woman across the hall that goes off every 5 minutes, doctors right outside my door loudly discussing patient details on their cell phone at 2am (I guess Florida was exempted from HIPAA...), and that health care classic, waking up a sleeping patient to ask them if they would like a sleeping pill. And then they wonder why my blood pressure is through the roof.

Another problem is what these idiots do to my blood sugar. Random doses of long- and short-acting insulin administered at random times that have no relation to the equally-random meal times, assuming I even get a meal; in a week-long stay I probably averaged around 1.5 meals a day. By the time I get home, my sugar is so jacked up it takes me weeks to get things back under control.

But the one thing that intrigues me more than anything is watching everyone struggling with the crappy software. Something as simple as asking for my latest lab results turns into a 20-minute click-fest as the person navigates down one blind alley after another, trying to find my latest creatine level. And I have to have those numbers written down somewhere because random medical staff won't be able to see them no matter how much clicking they do. I could never get close enough to a screen to see anything in detail, but what I could see looked pretty bad. Current information buried under a metric shit-ton of old data from days earlier, or even from previous hospital visits, notes from Doctor X not being accessible by Doctor Y and just a crappy use of screen real estate in general. (But then again, look at what Uncle Zuck's crew has done to Facebook). It has to be a nightmare for everyone. I'm guessing that the entire IT operation has been farmed out to some consulting group in Pakistan given that in all the time that I've spent in that hospital with my parents and my own health crap, I've never once seen a geek out on the floor. When I worked hospital IT, the last place you ever found any of us was sitting at our desks. The majority of our time was spent out on the floor with our users seeing what they needed, what problems they were having, etc. I wonder if anyone has ever looked at how many "negative patient outcomes" and "near misses" are due to crappy software?

So I get sprung. Now I have to schedule follow-ups with all eighteen doctors who walked by my room while I was an inpatient. Problem is I have some funky Medicaid thing for insurance now that we have zero income. Which not a single specialist in Pasco County accepts. Worse, I can't just go in and pay cash; that's not allowed either, even when the doctor in question is someone like my hematologist who I've been paying cash to see every three months for the last seven years. Now he can no longer see me as a patient. Or maybe he can. Nope he can't. Oh, but if I sign this form and pay an extra $50, he can. Maybe. For now.

Not that it matters as none of the eighteen doctors will make any sort of diagnosis or prescribe medication because I'm on dialysis and the dialysis center has to do everything. Now, I love my DaVita Dialysis Center peeps. If I could I would nominate every last one of them for sainthood. They are the only people we've dealt with who can manage to communicate actual information to us in plain English and get actual work done. But they are not my primary or my hematologist or my nephrologist. They cannot be expected to know all about my leukemia or diabetes, but no matter what questions or problems I have, the answer is, "Ask your dialysis center. There is nothing I can do for you." Uh, I paid 150 bucks for this load of bullshit? Thank the gods for WebMD.

And because that couldn't possibly be enough to drive us nuts, we are also doing battle with Social Security and Medicare. The last thing that happened is probably the most iconic. We finally get sick of being ignored on the phone and show up at the Social Security office in Dade City. The status on my disability was pretty much what we knew it was going to be; in process. Check back in a year or two. Even though we keep being told that it's "automatic" and "instantaneous" for dialysis patients, I know better than that. The SSA takes at least two years to approve a disability claim no matter what. But we were getting a lot of conflicting information about when/if I can get on Medicare. As we suspected, all these hospital social workers that have been claiming to do all these wonderful things on our behalf haven't done a damn thing and the process hadn't even been started. So we asked what step one was. Make an appointment for a phone interview. So we tell the clerk to do that. Sorry, I can't. There are no appointments available as far out as the calendar lets me go. Sooooooo, now what? Our only option is to call every day and see if someone cancels. We just sat there, staring at her. She finally went to someone else's cube and found out there is a second, secret calendar (more shit-tastic software) that did have a couple openings. So on top of the four weeks we already wasted, now we wait for three more weeks just to take the first step in a process that is only supposed to take 30 days. As I told a fellow Moose Lodge member we bumped into later in the day; we have a trillion dollars a year to blow up countries most Americans couldn't find on a map, but we're too poor to fund an adequate number of employees in the SSA or VA or any agency other than the military.

So here we sit waiting and wondering as we watch our savings account slowly approach zero. When you see me on the news for choking someone with my bare hands, now you'll know why.