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.