Adam Brown shares his recent experiences managing his diabetes while at the hospital, and he brings back the old topic… Are hospitals ready to manage your diabetes?
" How I managed my blood sugars after emergency surgery, IV dextrose madness, why CGM is desperately needed in the hospital, the ludicrous cost of fingersticks, and more
We’ve known for a long time that diabetes care in hospitals is often bad, but until you experience it personally – and you have to go to the ER and have an emergency surgery and stay there for five days – you don’t truly understand how unprepared hospitals are.
My experience last month left me deeply concerned about anyone with diabetes who has to go into any hospital. Because I’m proactive and knowledgeable, I was able to take control of my own care and navigate my way through, but it was not easy. At times, I had to override doctors’ orders at one of the finest hospitals in the country, UCSF."
I’ve been hospitalized in four different countries after having become a type 1 diabetic, and I have only once been lucky enough to be allowed to take charge of my own insulin and food management, after the endocrinologist they sent in to ‘get things under control’ gave up. When the patient is not allowed to be in charge, and an idiotic doctor wants you to have 10 units instead of the 3 units you found reasonable, you get 10 and, if you’re not lucky, you die.
What really scares me is what will happen when we are old enough to be in nursing homes and the people in charge of our insulin dosing make mistakes like this all the time?
Adam Brown’s entire diatribe should be read by anyone with diabetes, no matter what type. Having been hospitalized several times myself, I’ve run into such ignorance by medical staff it never ceases to amaze me. One nurse told me it didn’t matter how high my blood sugar was during/after surgery because “it’s only high blood sugars over a long period of time, like many months, that cause increase risk of infection.” Another time, when I had a stroke and was admitted, the hospitalist wanted me to either shut of my pump or turn down the settings. Since I had aphasia as a result of the stroke, I was having trouble explaining to her that I wouldn’t go low, as my basal settings were perfect. She insisted I lower them, but I totally messed up my pump settings and had to turn it off, and she then put me on Lantus and humalog on a sliding scale, which totally screwed up my numbers. My pcp was totally pissed the next day when he came in to see me and found out what had happened.
More recently, I’ve had two total knee replacements. This time my pcp (who is also an endocrinologist), came into the hospital immediately after I was brought up to a room and wrote in the chart that I was to manage my own insulin and glucose monitoring. What a difference! And one nurse came in to see my pump and to find out more about it. So glad I was able to give her at least some education about D and pumps.
I had to fire a dumb-&ss endo that was “in charge” of my diabetes while I was in for a few days for surgery. My regular endo didn’t have privileges at the hospital across town that my surgeon worked in, so I met with an endo who had privileges there and he agreed to monitor me while in for surgery. If I’d done what his orders to the nurses had stated, I would have died or been in major distress. I had to talk to the administrators to get him off of my case. Once I did that, I had no more issues with my glucose control for the remainder of my stay.
I’m having a total knee replacement in a month and we aren’t doing anything special. I’ll stay on my pump and dexcom. Should be an overnight stay AFTER the mid-day surgery. My doc already agreed that I can leave my equipment on during surgery. The “bag guy” (hand picked by my wife, who works in surgery at another facility) will monitor me during surgery so my equipment is there to keep me from having to switch to MDI and for me to have both prior to, and right after, my surgery. I’ve done this before. PIECE OF CAKE.
I’m the hospital on bedrest for pre-term labor and when I was admitted they wanted to put me on a sliding scale. I insisted that wasn’t going to work and fortunately my OB recognized that I know what I am doing and my diabetes is well-controlled so I was able to get the orders changed. I still have to use their insulin and test with their meter, but I tell them how much insulin I need at least. It took a little longer and not gaining any weight to negotiate being allowed outside food. Having diabetes has really taught me how to advocate for myself with medical professionals, especially since they tend to not know what to do with me because I am labeled “T2” (autoantibody negative) but act more like LADA (which a lot of them don’t know about). I still can’t believe they don’t give pre-meal insulin for their T2 and GD patients who are on insulin. Waiting until an hour after meals and then correcting seem like a horrible way to manage blood sugar.
I’ve been fortunate, and for the few brief hospital stays I’ve had, I’ve always been allowed to manage my diabetes myself. I didn’t even have to fight for it. The nurses/doctors just said that as long as I was alert and comfortable in my ability to self-manage, I’d be allowed to continue on my own. The one exception is when I had outpatient surgery when I was in my early 20s (on NPH at the time, and CGM didn’t exist). I received dextrose in my IV and woke up from surgery to find my blood sugar was 15 mmol/L when the nurse checked it. It wasn’t a major issue since I was home within a few hours.
This line out of the article really caught my attention as a Canadian:
I paid $2,950 out of pocket.
I feel so fortunate that I never have to take a second throught before going to emergency. If I’m dealing with a symptom that’s severe and that I feel needs urgent attention or threatens my life in any way, I can go to the hospital without such a huge weight of stress as having to pay thousands of dollars even with insurance.
I also totally agree that any patient being treated with insulin should have access to CGM in the hospital, even just in emergency. This in and of itself may make doctors and nurses less scared of hypoglycaemia, as they could set threshold alarms. I can’t think it would be that hard to design a transmitter that would send information to the same monitors used to display heart rate, oxygen, and blood pressure information.
Gee Dave…only one night in the hospital after TKR? I was in 3 nights each time. Would have only been in two nights, but since I live alone in a two-story condo and I wasn’t going to rehab, they kept me for an extra night until I was able to do stairs.
Couple of things from the article really popped out for me.
Medicare considers severe hypoglycemia as a “never event,” meaning a hospital will not get paid if it occurs.
Wonder if that extends to other carriers, if not formally at least by the effect on general practice. Certainly underscores the “we’d rather you ran high” mindset anyway.
**Not a single nurse at one of the finest hospitals in the country had heard of CGM – all were completely blown away that I could receive a real-time glucose reading on my phone and alarms for highs and lows.
Matches my experience. I was in for day surgery on my hand last week and pretty much all the staff were amazed by my CGM. Particularly the anesthetist, since he was responsible for monitoring my vitals, BG included.
One thing I was impressed by during that operation: I had told them ahead of time that I’m T1 (of course) and used a pump. In pre-op they had a standard form all ready to go that concerned my control of pump settings and that I took responsibility for all of that. Last time I was in the hospital for a significant surgery I had all the struggles described in the article and more. Had to argue them out of putting me on R/N!
I was in the hospital back in May for a kidney stone. I was at 300 after my procedure and had to quibble with someone over whether or not I was going to take two units or four units so I could eat something. What I really needed was 12 units.
One hospital ‘doctor’ told me that since my blood sugars had been low the previous day, he was not going to order any insulin at all for breakfast, and we would just wait till lunch to see if any insulin was needed then. I tried to explain to him that if I didn’t take any insulin for breakfast, we might as well pour it in the toilet rather than into me, since the food would have just as much nutritional effect.
A couple of years ago I went into DKA while visiting my sister in a medium size town in Oklahoma. The endo & ICU staff were incredible and once the crisis was over were enthusiastic about letting me go back on pump and cgm for the rest of my stay.
I have minor day surgery coming up and my pump and cgm will be on the entire time. It’s already been discussed with the surgeon and anesthesiologist and they are on board, they just wanted to make sure that the operating room staff have clear instructions on how to suspend the pump if necessary.
That’s the plan. Hospital food is so awful, so being in for 3 days would stress me out. And being woken from a sound sleep for vitals is another aggravation. And the noise. And being mostly in bed. I abhor hospital stays. One night shouldn’t stress me out much.
I read this piece the other day on DiaTribe and was like this is 1000% accurate.
When I was pregnant with my little one I was put on insulin to maintain good blood glucose control and followed a regimented diet. All to good effect, my A1C at the end of the pregnancy was 5.3!
Then I gave birth to her and although the delivery was straightforward and complication free I had to stay in the hospital two days after she was born. Between the food options (the diabetic “diet” was a joke), the clunky hospital meter that took a vial of blood to get a blood glucose reading, and nurses/doctors that wanted to argue about insulin dosing…I was exhausted and just begged to go home to I could rest, eat appropriately, and take my insulin as usual.
For the second TKR, I ended up in a private room, accidentally (not charged as private room). What a relief! And bonus…walk-in shower right in the room!
The one time I was in for surgery with an extended stay was a nightmare. I was on Lantus/Novolog MDI and they wanted to treat me with R/N, which I had only recently gotten off of after 20 years and absolutely hated. They were going to set the amounts and do the injections and everything. It took a lot of arguing to get out of that bind. I think that in general there are fewer conflicts of this kind if you use a pump, though obviously it’s not a guarantee. During pre-op for my recent hand surgery, the head surgical nurse put it this way: “If you’re using an insulin pump we assume you know way more about what you’re doing than we do.”
I think you’re right that a pump serves as an indication to hospital staff that the patient knows some things about diabetes that they do not. That works out OK for the pump patient who wants to take care of their diabetes regimen in the hospital.
It appears to me, while nursing staff may concede ignorance about pumps, they may not be aware of the extent of what they don’t know about diabetes in general and that can place the nurse and hospitalized diabetic at odds.
Adam Brown’s account stunned me with the story about how none of his nurses had even seen a continuous glucose monitor. This technology has been around for more than 10 years now, but I guess there are not that many of us wearing it. I would think that this technology would be part of the ongoing technical/medical training for nurses and doctors. But it appears that it is not. If UCSF is not keeping their staff up to speed on emerging diabetes treatment technology/regimens, then that seems to indicate that it’s a rare hospital that does.
Hospitals represent a perilous threat to people with diabetes. It shouldn’t be this way!
This also really surprised me. In my hospital experiences, nurses were asking if I had a CGM as far back as 2010, when CGM was far less commonly used than today. More recently, now that I have a CGM, nurses often think I’m on a closed-loop system. If anything, in my experiences nurses think we’re farther ahead in diabetes technology than most people are.
