Two ER visits within two days, thanks to a severe low blood sugar and then non-budging high blood sugars.
Both are enough to make anyone with diabetes cringe. But then there's the fact that these experiences themselves highlighted how the urgent care establishment is ill-equipped to deal with diabetes.
I've long believed that we PWDs (people with diabetes) aren't going to get quality care in the emergency room if we end up there. From the Diabetes Community stories I've heard, opinions of medical professionals in the diabetes world, and my own experiences visiting ERs on a few occasions through my life, that is what I have come to believe.
Sure, it may be more sarcastic than serious to say "the ER is trying to kill me," but there's certainly some real-world trauma weaved into that comment. The recent dual ER visits that my mom experienced reaffirm this, and I just want to share this story as a way to call out for whatever change can hopefully materialize ...
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I'm not happy with what happened in the ER relating to my mom last week. But more than that, it scares me that this type of thing could happen to any of us.
First, it's important to remember that my mom has been living with type 1 since the age of five -- which means it's now about 55 years. She hasn't had an A1C above 6% in at least a decade, and from what I have seen she doesn't often go above 160 for any extended period of time. She has had insulin reactions before, and they've been severe in some cases, but they typically don't last very long and we've all been able to manage them.
Early on a recent Sunday morning, my didn't wake up from a hypoglycemic reaction. My dad awoke to her beeping Dexcom G4 continuous glucose monitor (CGM), and it showed that she was under 50 mg/dL for at least a few hours as reported on the CGM's screen. Her new t:slim insulin pump history shows that somewhere around 3:30 a.m., for whatever reason, she delivered almost 12 units of insulin into her system (!) -- we can only guess it was a result of being hypo and half-asleep at that moment, programming a bolus by mistake when she should have been taking in sugar. About 90 minutes later, she was aware enough to set a temp basal of 0%... but sadly, it was only for 30 minutes and then her usual basal rates kicked right back in.
More than three hours later (at 8:30 a.m.), my dad heard the beeping CGM and saw that she wasn't responsive. He injected glucagon and got juice and glucose gel into her system, but she still wasn't responding, so he called the paramedics. They rushed her to the ER -- for what would be the initial visit of this series of mishaps.
I live in another state, so I didn't get word until later that afternoon, after my parents had been camped in the hospital for about six hours. Even though by this time my mom was awake and her blood sugars were in the high 100s to low 200s, she wasn't coming out of it. She was still showing signs of Low symptoms, and that was worrying everyone. There was talk of lingering hypo effects and more serious possibilities like mini-strokes, but no one had any real answers. They kept her overnight and the next day. And then, despite her still not being back to "normal" mentally, the hospital authorities decided it was best for her to get in to see her own D-management team (affiliated with a different hospital system in the area). She was discharged and sent home, ready for the appointment within the next day or so.
But that wasn't the end of this ER experience.
The mental problems remained, meaning my mom wasn't completely comprehending what was needed as far as her insulin pump use or diabetes management. Her blood sugars rose gradually through the rest of that afternoon and evening, and apparently a missed meal bolus and faulty infusion set (or site) didn't register for either of my parents. Overnight, her blood sugars shot up into the 400s and remained there. Despite a correction bolus or two by pump and injection, her sugars weren't dropping and her mental state seemed (by my dad's accounts) to be getting worse.
The next morning, a Tuesday, he phoned me even more worried that something more than lingering hypos were afoot. We agreed that getting her back to the ER was likely the safest bet, and I coordinated to make an emergency trip up to Michigan from where I live in Indy.
So, my mom returned to the same ER that discharged her the previous day. This time, for high blood sugars.
ER, Round Two
Of course, her return triggered all kinds of warning bells among hospital management as they became concerned about their own liability in letting her go the day before and her coming back so soon.
You can't blame them for that.
As I'm told, my mom was in the ER for more than six hours without being given a single drop of insulin. Her blood sugars were in the 300s and 400s, but the hospital staff somehow failed to give her the medicine she obviously needed to help lower those numbers. Somehow my dad's insistence and constant questioning about where the insulin doses were was simply ignored -- despite multiple doctors and nurses repeatedly claiming that the insulin was "on the way" after they looked at everything else that could possibly be wrong with my mom. She needed a "tune up" before getting insulin, one doc apparently told my dad without really explaining what that meant.
Finally, about an hour or so before I arrived on the scene after a five-hour drive from Indianapolis, my dad let loose on a doctor who was questioning why her blood sugars were still so high. WTF?!
Apparently my dad's yelling did the trick, and within five minutes she had a dose of insulin injected. 10 units, as I heard it. An hour later, her blood sugar had gone up from the high 300s into the 400s, so they shot her up with another seven units. You know, just to be safe.
Just as I was arriving on Tuesday evening, they were taking her from the ER and admitting her to a private room.
Escape from the ER
That night, all seemed fine for the most part. My dad was able to get home for some actual sleep, while I stayed in the hospital room and kept an eye on things throughout the night.
Yes, she dropped down into the 200s by midnight thanks to an insulin IV drip, but then didn't get any insulin until the following morning -- and the male nurse (who seemed like a friendly guy and on top of things) saw a morning blood sugar reading and seemed surprised that she was back into the 400s... (sigh).
Insulin, people! Seriously. Diabetes 101.
From early on, we kept insisting that someone listen to what my mom's CDE said: Get some long-acting insulin into her system rather than just relying on the quick-acting, short-term doses that only work temporarily before blood sugars start rising again. No one listened until late in the morning of her final day there.
My mom was in the hospital almost the whole day after the second ER experience, and she was still not mentally "all there." At times she seemed confused, disoriented, even loopy. Something was going on in her head, and no one could offer a clear reason for it. I heard heart problems, mini-stroke, lingering lows, and other medical terms that all seemed to be logical possibilities. Some D-peeps on Twitter and email did reassure me that it could be lingering low impacts, especially for someone who's so "well-managed" most of the time. But the other possibilities were still frightening to think about...
Gradually, her mental state seemed to improve during that last day and we ultimately decided by that evening to check her out -- against the hospital's wishes. Everyone seemed to agree that it was best for her to get to her own D-Care team ASAP, and that we could probably monitor her diabetes health better than the hospital staff could. Ya think?!
Yet the hospital endo on call seemed more concerned about his own liability and monitoring every possibility, so she overruled the discharge decision. So we simply chose to leave of our own accord.
All of this time while she lay in the hospital, the staff didn't reach out to my mom's actual endo for his thoughts. Yes, he knew -- because my dad contacted him about the situation. But because he was in a different clinical system, the hospital staff opted to rely on its own diabetes people instead.
The day after her release, my mom's endo (the esteemed Dr. Fred Whitehouse who's been practicing for seven decades and actually trained with the legendary Dr. Joslin) saw her and offered his belief that the mental impact was probably the result of those crazy swings -- from below 50 for hours to more than 400 for many more hours. Totally out of anything normal for my mom. Research from the ADA Scientific Sessions this past week includes one study that says severe hypos can have an effect on memory, and that's a topic I'm personally going to be looking at more closely in the future.
My mom's endo and her CDE, who's also a longtime type 1, could only shake their heads about our second ER scenario, in which my mom wasn't given any insulin for hours on end. They echoed our family's concerns, and spoke from their own experiences in the medical profession: Something needs to be done, across the board, to address the mess that calls itself D-Care in the hospital.
Not Pretty, Across the Board
At the Scientific Sessions this past week, new data presented showed that hospital critical care admissions from hypos and even hyperglycemia is a pressing issue for this country's health care system. Some research points to the fact that despite high blood sugar-caused hospitalizations dropping 40% in the past decade, those caused by hypos has gone up 22% during that same period. And a second study presented showed that 1 in 20 ER visits were due to insulin issues, with hypos accounting for 90% -- and more than 20,000 hospitalizations were specifically connected to type 1 PWDs having hypoglycemia. And this study shows that even transitioning from one place to another in the hospital impacts D-management.
A recent blog post by type 2 PWD Bob Fenton highlights this very issue about hospitals potentially being "hazardous to your health," and others like our own Wil Dubois have also pointed out that hospitals and urgent care facilities just aren't prepared to treat PWDs properly. Honestly, they have too much to consider and the diabetes often loses out to everything else that's going on, including the various people coming and going on a strict schedule.
I also reached out to someone I know who lives in both the professional diabetes care world and hospital management/risk assessment field.
He preferred to remain anonymous, but offered these thoughts: "I think it's true that most medical professionals have a lot more experience with T2 diabetes since it's so much more common. Very few primary care physicians manage T1 diabetes on their own now because the more modern treatments (insulin pumps, etc.) require a lot of technical knowledge and there have been a lot of advances over recent years that are tough to keep up with. So most T1 patients are seen by specialists. I think this is one of the reasons that medical professional training programs are very important. Many health care professionals get little experience with T1 during training.
"That said, it's always tough to second-guess medical care without knowing the full picture. For example, a blood sugar of 400 in a T1 isn't generally an emergency unless there are significant ketones, vomiting, etc. And if the patient is getting fluids, these will often cause the sugar to drop without extra insulin... so sometimes we hold off on extra doses to see what fluids do. Of course, stress can sometimes temporarily elevate sugar levels and in the absence of ketones, and giving extra insulin can cause hypoglycemia.
"And if your mom was recently hospitalized for hypoglycemia, the ER staff may have wanted to be conservative to avoid low sugars. I'm just speculating about all this, of course. But it shows how many things there are to consider."
That gave me some things to ponder. Meanwhile, the accounts from those involved are what I can't seem to get past.
This is what my mom herself says about her various ER experiences:
I remember when I was about 10 laying in an ER and my mom asking over and over of doctors when I was going to get some insulin to help me. This would have been approximately 1963. Why is it the same today that T1s are still lying in ERs and not being given any insulin with BG in the 400s? The answer of 'we want to check out the whole body' isn't holding when you know of a broken part and you do nothing to remedy the problem.
To me, it seemed strange that, although they had never seen me before, they knew what I should do with the course of my medical treatment for the rest of the future. This included a group of endos who wanted to rechart my pump therapy and a cardiologist who wanted to change several of my at-home medicines. It seems amazing that doctors would be so arrogant as to want change things for someone they know virtually nothing about. If you have doctors within different medical systems, they're not listened to no matter how well-known they are in their field. They can't have any say in anything with regard to your care.
Even those involved in the hospital care couldn't, in hindsight, understand why my mom wasn't given any insulin. One of the primary care docs kept shaking his head when he heard about this, and said it was obviously something that shouldn't have happened.
When I was sitting in Dr. Whitehouse's office, my mom's CDE (who's a fellow PWD) looked right at me and said she'd been seeing this trend for years! The issue with poor D-Care in the hospital has been brought up at conferences and by those in the D-medical profession repeatedly, but hasn't been addressed, and frankly: this lack of D-understanding within hospital settings is dangerous, as I can attest personally. From a professional standpoint, my mom's CDE said she doesn't know what else can be done if the hospitals aren't willing to change.
This conversation came up a number of times at the ADA sessions with various endos and CDEs, and they all shook their heads as they recounted these same bureaucratically-related problems they have seen firsthand with their own patients in critical care settings.
Something must be done, they all echoed.
While no one is doubting that ER doctors and staff aren't well-trained in all kinds of emergency medical topics, it's very clear that they often don't understand the basics of diabetes! All I can say there is: H-E-L-P!