Does the medical team at your local ER know how to care for Type 1 patients?

Type 1 and LADA
21

We have to assume that no one in any medical field except some internists and endocrinologists know the absolute minimum about treating PWD who use insulin. :CLOSE TO NOTHING. I will not go into the many times I have had to tell my care providers over and over about how to care for my insulin needs. Sometimes they hear me and sometimes not. I have used the moments as teachable. We, apparently, on Tu D are a part of a small number of PWD who actually know how to manage their own blood sugars. Many of the reactions form medical personnel has been AMAZEMENT that I know how to basal and bolus on my own. They have even told me that they have NEVER seen diabetics in the hospital or the ER who were in control and knew how to manage their own disease. NEVER. So they treat us like what they have seen. And of course they have never seen a pump nor a CGM.
For pre-planned procedures, you can get a note from your physician that you can manage your own insulin doses when you are able, and that you are on a reduced basal while under anesthesia. I plan to have my endo do that when I go in for out-patient parathryroidectomy in May, and have already informed the surgeon who is in agreement, that I will manage it when recovered from the anesthesia.

I am still concerned about unexpected ER visits that I hope will not occur. I just pray and hope and expect the best...

God bless,
Brunetta

22

Oops. Well, actually the bolusing wasn't easy--there was the IV with glucose. The original question was about the ER--they didn't mind my treating myself when I was there with a displaced shoulder, but I wasn't there for long.

23

Considering when my son was diagnosed 10 weeks ago.. the nurses and doctors managed to completely misread their protocol for dealing with people showing DKA and gave him 1/10 the dosage of insulin they were supposed to for the first 6 hours, no they are clueless. It rather scares me that they are all probably clueless about all the other things people show up in the ER for.

24

"No outside drugs allowed in the room".......also, I was, of course, incredibly thirsty but no one had time to bring me any water. I am still fuming about it. An attorney friend says he will represent me pro bono (yeah, he is already licking his chops and ready for a fight), but I guess I just want to forget about it. Had it been a planned admission, I think my regular doc would have helped me get plan in place.

25

Brunetta- I think your explanation makes sense. Hospital staff see the PWDs who do not have good BG control. You almost have to wonder if the PWDs that they do treat actually benefit from the hospital care. Hmmmm.

26

I dread the thought of ever having to go the the ER. Every medical "professional" I've dealt with so far has been clueless about diabetes. I was in for a non-diabetes related visit at a local urgent care clinic where I informed the nurse I was type 1. She asked me if that was the kind of diabetes where I needed to take insulin and if I had "checked my blood sugar today?" It was 3 in the afternoon... I thought of responding "no, I only check it every other day...sometimes only weekly" Also, the Dr. was very concerned to hear that I followed a low-carb diet and warned me about impending, imminent kidney damage. Amazing...

27
She asked me if that was the kind of diabetes where I needed to take insulin and if I had "checked my blood sugar today?" It was 3 in the afternoon...

You could have responded by asking, "Would you drive a car blindfolded?"

Doctors will eventually, perhaps 5-10 years from now, understand the utility of a limited carb diet for PWDs. Before that time we need to quietly maintain our in target BGs and A1c's while experiencing few serious hypos. It will one day dawn on them that maybe there's something to carb limitation.

28

Well I am in college for a health care related occupation, and I'm in clinicals. The only veeeeery negative thing I noticed was a secretary I worked with saying that if we see diabetics in the ER they did it to themself. This was really upsetting to me when I'm a diabetic and know plenty of ways a diabetic could end up in an ER with a problem that they didn't do to themselves intentionally ( bad infusion set/pump malfunction leading to DKA, mixed up insulin pens , far too much or too little insulin due to vastly incorrect nutritional info, etc) . I do worry about patients if the clerical staff has that mindset even if they are not taking care of the patients themselves :( .

Also my diagnosis is how not to handle someone who's clearly a new-ish onset type 1 and treat them like a type 2 when they present with a blood sugar of 249 mg/dL 6+ hours after eating and with possible kussmaul breathing. I'm still shocked that they did nothing to treat my diabetes and sent me home with a 249 mg/dL reading and didn't test for ketones (which I had constantly during my time misdiagnosed as a type 2 and they'd go to moderate to large amounts when I was over 240 mg/dL and consistently I get moderate to large ketones at that point)

29

My er does pretty good. They listen to me and do what I ask them to do. I did get one dr that had a daughter that was type 1 so that was nice but for the most part they do what i ask them to do. I was hospitalized this past week and thankfully they called my dr so i didn't have to deal with the idiot hospital dr's. Only issue i had was the dr on call for my dr was his partner and for some reason he ordered iv fluids with dextrose when i was already in dka and no insulin. Go figure. My dr was quite upset about that.

30

I must have missed something. Where did the secretary get their medical degree?

[sarcasm intentional]
31

I was recently in the ER for a staph infection. They attended to me faster because of the T1D, but that was the only special treatment I got. Every time a nurse came in they asked if I needed a snack or something. They always listen, but I've never found a reason to extensively bring up my diabetes.I don't see why they would ever have to adjust my basal rate (omnipod). They did not contact an endocrinologist because it was not diabetes-related.

32

In Canada at least the answer is a resounding no. I was in for a bout of DKA when my pump stopped working over night. Even though I showed them the pump and told them I was a type one diabetic they just told me not to worry, id sober up. It took 4 hours to finally get the insulin and fluids I needed,but not soon enough. I didn't wake up for 3days.

T1s are quite rare when compared with type2s. So they're not really used to dealing with them. I had to get a friend to bring my testing supplies from home as they would only give me 3 a day at the hospital, where I commonly take 8 to 12.

And mistaking the smell of acitone for alcohol is inexcusable. It honestly felt like I had been transported back to the 1950's.

They only contacted the endocrinologist after I passed out.Oh, and after the toxicology came back clean.

My advice is to call everybody you can, and get them to show up as soon as they can.You need advocates.

33

I'm new here and this discussion just caught my eye.

I've been T2 for about 25 years. On MDI plus oral agents. Normally (up until a year ago or so, then things just went haywire) I'm pretty stable - always high :-)
I've been pretty lucky with not needing hospital visits up until recently. Without going into all the long details, I found myself going into the ER for A-Fib back in November. Well, with all those complications I was higher than normal, like 250. Which was not discovered until I was admitted into ICU later that evening - after they figured out I was not going to die in the ER!

Well they have this system called 'EndoTool' by Monarch Medical Technologies. Basically they enter all your particulars in the system and put you on a basal Insulin drip, take your BS and give bolus whenever the system tells them to. (Good idea or bad....the jury is still out at least for me.) It certainly helps the staff but then can also be used as a crutch. They don't have to understand the process, just follow the prompts.

Well, long story short, I crashed five times that night, like in the 40's, 30's and lower! Thankfully my partner was there and saw the signs before I realized (or could comprehend them) and called the nurse in. Received IV dextrose, then crashed again: Lather, rinse, repeat. Kept asking if we could stop this, they said no, Dr. orders.

Funny thing is that the protocol requires dextrose IV drip once you hit 140 or lower.
So does that make any sense at all? Insulin drip in one arm, dextrose drip in the other!

Anyway after the third or fourth time, I wake up from passing out to hear the charge nurse on the phone telling the Dr. that the patient was refusing any further attempts to manage blood sugars! Also, had a nurse sit in my room for the rest of the night!

Apparently, I'm special! In fact, I'm one of the 0.4% of the folks the system does not work for. According to their clinical trials anyway.

From that point on (and unfortunately, I've been back in the hospital 5 or 6 times) the first thing I tell them in ER and every Dr. or nurse that comes into the room, that I will be managing my one blood sugars. They are free to look at my log, do their own checks, but I'm the one making the decisions. I always take my insulin, meter, etc. with me when I go to the hospital.

They take this in stride now and are very understanding and cooperative. Maybe it's because my PCP is also Chief of Medicine at the hospital? I've given him critiques after each visit (and sometimes during a stay) and give him my impressions on experience, understanding, training, competence, attitude, etc. of EVERYONE I interact with. I pull no punches and usually have detailed notes from me or my partner.

I've only needed to fire one attending physician at the hospital, so far. He wanted to talk at me instead of to me.

Moral of story, you know your body better than anyone else. You have the right to refuse any treatment or require adjustments to any treatment. They can certainly explain the risks of specific actions, but you should make the final, well informed, decision.

I've had to sign lots of waivers! :-)

P.S. It's great if you can have a loved one with you. When I get into the low 50's and lower, I usually cannot speak clearly and loose fine motor control, until I black out anyway!

Sorry this is so long...especially for a first post, but it just hit home with me.

Thanks.

34

Lilly, Thanks for giving us the benefit of your unique perspective. I agree that people with diabetes with cognitive and physical abilities as well as an interest, should be given complete control of their glucose management. I have zero faith in the ability of any medical professional to control my BGs well.

Your story shows that the protocol did not have the necessary fingerstick frequency to pre-empt the repeated hypos that threatened you. Especially after the first one occurred. At that point the only reasonable conclusion would have been to watch your BGs more closely. They chose to do the same thing over and over, yet expect different results!

35
Basically they enter all your particulars in the system and put you on a basal Insulin drip, take your BS and give bolus whenever the system tells them to. (Good idea or bad....the jury is still out at least for me.) It certainly helps the staff but then can also be used as a crutch. They don't have to understand the process, just follow the prompts.
Well, long story short, I crashed five times that night, like in the 40's, 30's and lower!

Sounds as simple as, the basal rate was way way too high. Not sure the staff would've known how to get that right. Basal rates could vary a lot between an early onset LADA T1 who wouldn't need much at all, vs an insulin resistant person who might need a lot. Very much not one-size-fits-all!

36

You'd think that part of the protocol would warn the nurses to closely track BGs, like every 15-30 minutes, until a point of BG stability is reached. The diabetes education of medical personnel is inadequate.

37

Good for you Lilly, I did the same thing after my dka when I was readmitted the next day with a dvt- I had to have a huge argument about it, no waivers signed, and then they let me manage all of my testing and insulin for meals, but they still did the basal, according to my endos directions, not according to a one size fits all system which is likely to cause problems. I was newly diagnosed so that was being reduced already each night practically. I'm hoping I never go back but if I do I will be handling all of my insulin, there is no way I would let someone else do it unless I'm unconscious and even then I would have my dosing for basal doses written down for them in records. And how stupid of them to keep putting you through all those hypos when they could have easily stopped it by contacting the doc and adjusting the dose.

38

Hi meee. There is just no predicting an emergency happening to you, and what insulin you will need if it does. I wrote on this thread earlier--I went to the ER needing an emergency abdominal operation. Their system of giving a bolus (correction) only (no basal), on the sliding scale, testing me every six hours didn't work. I needed my Levemir; when my doctor visited me, he ordered four units of Levemir for me to be given every morning. That was a half dose of my regular regimen of 4 in the morning and 4 in the evening, but he was correct--during my hospital stay, that was perfect! I didn't eat for several days, and they began to trust me to suggest the right amount for a bolus. I was so lucky to have my own doctor to help me! Btw, their computer has my up-to-date regular regimen listed since my diabetes team has always been affiliated with the hospital, but my regular regimen was no help in this emergency.

39

LOL… once the word DIA-BETES is used, its the sole filter they look through EVER, in my experience. Doesn't matter if it is a broken bone, a wound, once they find out you're diabetic, they treat the DISEASE not the patient.

For anyone with meaningful experience its a living nightmare almost always.

"...Ahhhh no bozo, modifying my diet will not bring down that number meaningfully. I'm a Type 1, and there is no carbs in the current equation which achieved that number. The fact Im bleeding like a geyser might-maybe have something to do with it though… you think, maybe?…"

As for most technology, rarely if ever will they understand "it". They don't use them daily, we do...

40

Thanks Terry & Tim.

Interesting thing is they were testing very frequently I was sort of out of it, but my partner says they did it every 5 minutes for a while. And then somewhat less frequently.

It sort of makes a little sense because I have this odd habit of inexplicably 'crashing' every now and again.
I have no idea if this is normal or not, but I can easily go from 140 to 60 or lower within 10-15 minutes without apparent external influences.
Like at four in the afternoon after a regular lunch w/ regular bolus after a regular morning. (Scary when you are driving to get the kids from school!) These are really puzzling because I would expect to go high at that time. The Humalog from lunch should be gone and the Humulin N from six AM should be fading by then.

Or it happens at two AM after a normal evening meal and bolus and bedtime basal. Or at six AM!

Or randomly sometime during the day.

I'm pretty much a creature of habit, so very similar carbs (if not exact) for breakfast and lunch, and dinners are pretty close too.

Then of course, sometimes, I'll jump to to over 200...really weird. That's what my Dr. calls me anyway.

It's driving me nuts.

I also have a problem with hypo-unawareness, sometimes. So that just complicates things. I'm on a beta blocker, so that accounts for some of this. Might be affecting other aspects on adrenalin response in some strange way, even though it supposed to be cardiac specific.

When my cardiac issue appeared, it interrupted some experimentation we were doing. But since I'm T2, the insurance company does not care that much about me :-) and refuses to pay for enough strips to really keep an eye on things. No more than four per day!
We've done a couple of the 72 hour CGMs, it's been unremarkable each time. I guess we should do that again now that things getting back to 'weird'.

Now that my cardiac issues are resolved, we are going to do some more testing: C-Peptide and some autoantibody tests.
Sort of off-topic, both my sisters have tested positive for HLA-B27. One has been diagnosed with a very rare autoimmune disease that has some weird non-name, like "An orphan of a rare HLA-B27 something-or-other", resulting in significant orthopedic issues, she's has like 15 surgeries in the last several years. Doubtful it's related, but there are some interesting linkages with HLA and T1. Maybe this will shed some light on things. Or most likely it will just tell me what else I can expect as I get older.

I think CGM will be a tremendous help, but again without specific C-Peptide levels, my insurance company will not approve it, regardless if I meet all their other criteria. I'll be lucky to get a pump authorization. I think being able to adjust the basal rates for different times of the day will be a big help.

So I'm already preparing documentation for the appeal that I expect to be needed. Like neuropathy, retinopathy, some kidney issues, severe bruising from 6-7 injections/day, lipohypertrophy, plus bleeding (blood thinners).

I really don't get the penny wise, pound foolish attitude of the insurance industry: You're not bad enough for us to pay a little now for the equipment that might prevent complications; but we will gladly pay later to remove part of a foot or leg, pay for dialysis, or a kidney transplant, etc.

It's frustrating sometimes. But maybe I'm putting the cart before the horse and my C-Peptide will show I've got a burned out pancreas and every thing will be OK.....NOT!

OK, sorry for the rant, but I've been fighting with the insurance company for a couple weeks on some other 'simple' things and they are clueless like a sleep study provider or who to go to for diabetic shoes. GRRRR!

Thanks for being here folks!