My PCP sent me to the emergency room last week. I was wondering how other ERs care for Type 1 patients - especially when the apparent reason for the ER visit is not related to diabetes. Do they test BG? How often? Do you get water? Does anyone change / adjust insulin dosage? Do they listen to you, the patient? Does the medical professional understand a CGM? Do they contact an endocrinologist?
I would like to hear about positive and negative experiences from other T1s who go the ER. Thanks.
My only experience with an ER was when I was transported there due to a middle of the night dangerously low BG. I was on multiple daily injections at the time and mistakenly injected Regular insulin at bed time instead my long acting basal insulin.
The first responders cured the emergency low with a dextrose IV. I was conscious and coherent by the time I arrived a the ER. While they watched my BG they pushed cereal, milk and juice on me. I was relatively diabetes naive at the time and ate what they suggested. My BG soared to over 400 and it took me 24 hours to get it back to normal.
As long as I am physically and cognitively capable, I will not consent to hand over my diabetes care. I realize that this stance is sure to create some sparks in my future. I will not go down without a fight.
There almost no medical professionals with the experience and capability that I have in dosing insulin for me. By comparison they are amateurs. Just ask them a few questions, like, "Are you aware of my insulin to carbohydrate ratio?" Or perhaps, "Do you know what my insulin sensitivity factor is?" The list just goes on and on with concepts like prebolus, superbolus, and extended bolus. You could ask them, "Can you explain to me the difference between type 1 and type 2 diabetes?"
I expect ER personnel to know nothing about diabetes. That way I won't be dissappointed or surprised. If they know anything about diabetes I will assume that it's about T2D.
Now I know that there are competent ER personnel that do know about diabetes but they are not predominant.
Thanks, Terry.
Terry,
My experience was that they know about diabetes. Just not able to respond as one would like them to.
I am Type 2 on MDI. after the 2nd hour of them not bringing me the basal dose I requested I sent my husband home to get my insulin. After that I had to call the head nurse in anytime I needed to dose and she had to watch me inject and write down the type and amount I was taking. I did inform her that if she did not come quickly I would inject anyway so I could eat before my food was cold.
She didn't like me too much but my BG's did not suffer. And, the nurses just stopped checking my BG after the first day and asked me what my level was.
If handled correctly they shouldn't give you a hard time.
I live in a rural area where our local hospital has almost shut down numerous times and for reasons beyond budget considerations. I wouldn't trust them with a hangnail, but would ask transport to the hospital in the large town an hour away. But I think Terry illustrated very well the hopelessness of expecting them to manage my blood sugar. If I had to eat hospital food (::::shudder::::) I would, especially as a vegetarian, not expect much and would resign myself to iceberg lettuce salads and overcooked vegies which hopefully would give me the strength to get the hell out of dodge asap!
I would definitely go Samantha's route and fight to manage my own D. Which reminds me. I have to see my doctor every 3 months for Medicare now and really don't need anything from him so will use the time to have him write a letter for me to have on record which states I am to be allowed, if able, to manage my own D while hospitalized! I hope it never happens because it will involve working very hard to keep my tone polite!
I have never been to emergency for a diabetes-related event. All the times I've been there, the doctors have done an initial BG check and after that left me to it, even once when I was admitted. The only thing I had to do was let them know whenever I tested, bolused, or ate so that they could record it. The only time I ever got an "extra" test is if I told a nurse I felt low.
However, I don't think general doctors know anything about diabetes, or even specialists aside from endocrinologists. I went in once with my jaw dislocated (happens sometimes when I yawn). I had bolused, yawned, and then was completely unable to eat or drink. The doctor seemed completely unconcerned about my fears of going low, and just said I'd feel it if I went low. My mom told them I don't feel lows until I'm around 3.0 mmol/L, and the doctor seemed shocked that I wouldn't feel it sooner. They knocked me out, put my jaw back in place, and let me go. I went low pretty much immediately after walking out the doors and had to scarf down a bunch of food. Probably not the best thing to do with a recently-dislocated jaw ... I suspect stress kept me from dropping a lot faster and harder.
I agree with you and Samantha. I could actually manage, but I had to keep asking for water. I was not admitted to the hospital- thank heaven! My PCP called me the next day to say that the blood work showed that I was dehydrated. No surprise there.
I talked to a T1 friend of mine this morning who was admitted to the hospital. Her BG was at 400 before the ambulance arrived. Her story was unbelievable. If your condition does not permit you to advocate for yourself, it can be a big problem.
Jen- You had your mom there to advocate for you and they still did not listen to her. I find this to be incredible, but probably all too common. Thanks for responding.
I've been there a few times for various things. Last year I had a cyst, went to immediate care, she said "I don't have narcotics, you'll need them, you'll have to go to the ER" so I went there, he lanced it with a scalpel (*super* gross...). If I'm conscious, I have a CGM and usually will lug my meter along and a bag of SmartieBeans so, if something happens, I'm not gonna ask them, get a chicken salad sandwich, chips, two cookies and quart of OJ, I will just nudge my BG where it needs to be. They test and I sort of cheat and make sure everything is hunky dory before I get there. I dunno about an EMERGENCY situation, like if I get run over or something. I hope I don't have to find out!!
I had a 24 hour hospital stay this week, not related to diabetes.
Went to the ER at about 3 p.m.
My purse, including meter and insulin was whisked away. Kept asking to have my bg taken.
At 5:30 bg was 475. Told them I needed insulin immediately. Response was I'd have to wait until I was admitted, or if released.
At 11:30 was told I'd be admitted. Requested insulin. They said I'd get some when I got up to my room.
At 1 a.m. I arrived in my room. Admitting nurse said my medication records had not transferred up to his computer. When they finally did, he said he would order the insulin from the pharmacy. Meter reading said "hi".
Finally got insulin (inadequate dose) at 2 a.m.
A freakin' nightmare. This has happened to me before.
My purse, including meter and insulin was whisked away.
Kathy,
Was your purse simply secured against loss/theft or did they specifically intend to separate you from your D supplies?
Dr. Bernstein's Diabetes Solution contains generic letter written from a hospital patient's perspective to to the hospital upon admittance. It refers to this practice of removing diabetes supplies from PWDs as "barbaric."
What a frustrating experience. I don't know what would bother me more, the super high BG or the deliberate system that caused it! Isn't the first rule of medicine, do no harm?
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My experience was more like acidrock23 and my friend's experience was much more like yours, but worse.
I know this is a very small sample, but the troubling pattern of care is a concern to me.
Yes, the hospital took away my friend's pump when her BG was 400.
I couldn't really talk, so I'm glad she was there. Not sure what'll happen if it ever happens to me when I'm alone. I suppose I'd type on my phone or something, but it might mean they listen even less (or else maybe they'd take it more seriously).
I have been in the ER and hospital many ,many times and unfortunately most of the story's on this thread have happened to me at one time or another. I have been put on a glucose drip when incoherent and my wife has disconnected it, tested my BG, and many times given me insulin when the hospital staff had been negligent or simply refused to give me insulin for one reason or another.
I will have to say that when I had my transplant, the transplant team did their best, they actually contracted a Endocrinologist to manage my BG while I was in intensive care and she admitted that without my input she could not offer me much help. They also where faced with not having any protocol to cover transitioning a patent of of a insulin IV drip and back onto their pump, they basically just chose a time and turned there backs on me while I inserted a infusion set and started pumping insulin. The doctors and Nursing staff simply do not use any of the products we are familiar with.
Glad to hear you survived that experience. Looks like I need to train my husband better. Right now he just helps me get the tape over the infusion set after I change everything out.
I would also like to find a way to present the patient point of view for improved care to the medical team. I don't know the best way to go about that.
Any time I have ever gone to the hospital, for any reason (emergency or planned visit), I have informed the staff immediately upon arrival that I will manage my own blood sugar. It’s never been a problem.
I usually ask for a couple of pieces of lined paper, a clipboard and a pen. I write everything down and they are free to look at it when ever they want. I keep my bag of diabetes stuff right with me so I can test and dose. I have done this in both big city hospitals and in my smaller community hospital.
I say, be firm and stand your ground. Tell THEM how it’s going to go. Also, my daughter is a nursing student and she told me NEVER to let anyone else manage my blood sugar when I’m in the hospital. They put you on their schedule and switch your insulin to what they carry and screw people up in the process.
Way to go, Cinderfella!
My experience has always been that they are completely clueless. I get so mad at the Xray/Cat Scan people everytime. They roll their eyes when I say I want my pump put with them behind the radiation barrier. They say it will be fine. I say, I don't care. Protect it or pay for it if it breaks! Most of the nurses and doctors have never seen an insulin pump, let alone a CGM. My caseworker at Anthem BCBS is a Senior RN Caseworker and I had to explain to her at least 4 times that a CGM is NOT the same as a pump. Then I had to explain 10 times that there are 3 parts to a Dexcom. Receiver, Transmitter and sensors. It's all pretty frustrating. There is NO way I would hand over my diabetes care to anyone. They don't have a clue.
Hi Cinderfella. Easier said than done! I was in the hospital over the New Year's with emergency abdominal surgery; I had no insulin with me and would not have been allowed to use it if I had some. Their method was to test every 6 hours, use the sliding scale, Novolog and no basal. As a Type 1 on MDI, the lack of basal scared me to death, my BG ran very high, but I was allowed no input. When my own doctor came to see me, I asked him to get me some Levemir and let me suggest bolus doses to the staff; after that I did very well and the hospital staff was so amazed! (Bolusing was easy; I had no food for days.) Conclusion: at least at my hospital--which is a good one, they saved my life--you need a diabetes advocate such as your own doctor.
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