Diabetes Checklist for Hospital stay

I do graphic design so I am set for office and art supplies—just hoping to get more food and hand soap in my pick-up order at the grocery tomorrow.

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This woman saw my question on the diabetes forum and let me know put a link to the information I shared about my Emergency Medical card on her blog today.

Bringing 3x5 cards with instructions misses the mark. You have to understand that nurses don’t take treatment orders from patients, they take orders from doctors. What you need is to bring a letter from your physician on their letterhead stating orders for the treatment of your diabetes while hospitalized. You can ask your doctor to specify that you are to manage your BG with your own pump and CGM while conscious and alert, but even then, you must understand that the hospital physicians have the final word. Your only right is to refuse any specific treatment, and you only get to do that while deemed competent.

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You make a good point, @bkh. Yet plainly enscripting the fact that you are a T1D with an absolute need for insulin can serve as a reminder to a distracted care provider in a chaotic environment.

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Terry, thank you. I had my husband read and copy your post into a printable format. He’s good enough to give me my long-acting injections, but is still unclear on the difference between the Humalog that I control and the Toujeo that he administers when we’re both home. I tell him when I change the usually-constant dose, in case he notices and thinks I’ve made a mistake. An UNINTENTIONAL mistake, that is, since every shot is an experiment, and my results will vary.

It horrifies me when my endocrinologist tells me he wishes all his patients worked as hard as I do, and had such good results. I don’t think my control is admirable, but that gives me some reference to what is considered good care. When I went to the emergency room with a cat bite, I learned that they would ignore my bg until it rose enough to constitute an emergency. Ketoacidosis, anyone?

I knew enough to be very specific in my demands when I went in for a lumpectomy and its follow-up when they didn’t leave wide enough margins. But yes, I was fully functional at the time.

I can’t see putting together a complete “go pack,” because so much of its contents has expiration dates. I will create a container for one, composed my 3 x 5 cards, label stuff as you suggest, and have a checklist of what should be in it.

Thank you again. This gives me another project to work on in my excruciatingly boring house arrest. (I’m scheduled to return to work on a couple of days, since I only asked for two weeks off. I might be smart enough to extend it.)

mh

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Dr, Kim Schrier ia a Rep in Congress fron Washington state. This is a link to her twitter account.

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This seems reasonable to me but let me tell you about my preparation to leave the house in an ambulance due to shortness of breath. I was so preoccupied with the threat to my breathing that it took a lot of focus and effort on my part to pack my go bag. It reminded me of trying to do something to help myself when I’m hypo.

Anything you can do ahead of time to help ease that last minute bag packing will help. In your case, having your mate to provide backup is a big advantage over someone like me who must do it alone.

I think it’s great that your husband is willing to participate in some of your diabetes care. I imagine that is comforting to you.

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Don’t forget your cell phone and charger. There are plenty of telephones in a hospital but, if you’re like me, you won’t remember any numbers.

The top of my checklist is I control insulin and will always have emergency carb source readily available. That comes from a standoff with a nurse who wanted to take my insulin and insulin syringes away and leaving me depending on the hospital’s no pre-bolus sliding scale and fat needles.

I don’t have first hand experience while on CGM and pump. Most of the posts I read indicate keeping control on CGM and pump is, thankfully, much easier than than when using injections.

Richard Bernstein MD has a sample letter in his books and on his website to have your HCP sign. It says that you will have control over your D mgt. I am deathly afraid of being admitted to the hospital I have to use due to my health plan. They periodically hand me a sheet telling me that I must surrender my pump, CGM and meter to them. Not gonna do it. At the very least 4 fingersticks a day isn’t gonna cut it, use of the sliding scale only, and a target of 200+ bg is unacceptable. I don’t expect hospital staff to be as well-versed in D mgt (especially T1D) s we are. And all too often, they see an adult with D and assume T2.

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I posted a link to Dr. B’s website with the letter; look up a bit to:

I’ve been thinking about this a lot lately. Listening to the news, it is sad but I must say, in these days with Covid-19, it is highly unlikely any medical staff will have the time or inclination to take the steps necessary to keep our blood sugars in our individual preferred ranges. We will all go into a “zone” of ranges and even with that, the medical staff will opt to keep us quite high, so as to not need to worry if they aren’t able to get to us to treat a low. It just doesn’t look good right now.

In the best of times, it can work. It did for me and I didn’t need a signed copy of Dr. B’s letter, just my A1C history. My surgeon knew my control was superior to anything the hospital staff could replicate and for the week I was in the hospital and the following week I was in rehab, I was able to take care of my own dosing.

Unfortunately, today my A1C history wouldn’t be in my favor. It’s almost like I am bolusing with water. I’m beginning to think my vials are no good - or most of them are no good. I’m noticing some vials are working much better than others. I’m talking about being 70-130 (with a few corrections for drops to 40) vs 200-300 (and not being able to get it down below 190 for anything), really huge variances between vials. This has been going on for quite some time, so it isn’t due to anything with Covid-19.

Alright guys, things are changing.

I would like you to start brainstorming a plan for what happens if you get very, very sick and HAVE to stay at home. Who will check on you? Do you have a plan with that person? Will they have the resources to drop off supplies on your doorstep if your sick for 2-3 weeks? Do you have a bathtub? Will you be able to run yourself a tepid water bath and lay in it in order to bring your fever down? Do you have a fever reducer?

I would also like to see a plan for if you get taken to a non-traditional hospital, for instance, imagine a makeshift hospital setup in a college dormitory or an army tent like the one on the TV show MASH. Do you have a fanny pack or bag that you can wear, holding enough supplies to last you for 2 weeks? A BS machine and strips? Lifesavers candy? Dex receiver and charger? Do you have a permanent marker that you can use to write on your forehead and forearm 'TYPE 1 DIABETIC."? How will you take your oral meds if you are throwing up?

Is there benefit to creating a map of where we are all at, in order to locate 2 diabetics in each state, in case someone is in trouble? I am in MN. If you are as well and want to IM me your name, phone number, and address, insulin dosages/tech, I’ll keep a list in case someone needs an advocate.

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Okay, writing on your forehead cratered me.

Add to your list, do you have someone to care for your pets if you are sick or hospitalized. We asked a neighbor last week and he said he would care for our fur babies.

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Its probably better to write “INSULIN DEPENDENT DIABETIC” in case your working with an EMT or army medic who rarely delivers insulin. As we all know, people get type 1 and type 2 confused. Its always better to be very specific and clear.

True about the pets. Very important. I think that I will soon be taking a cat with medical needs. Food has been tricky to obtain because of difficult procedures and prescriptions.

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Yes, I saw the link that @Tapestry posted before. Unfortunately, I’m not pleased with the concept of that letter. It’s a very polite plea that I fear is too easy to ignore and/or overlook. How do I even know that letter would make it to someone who could employ it?

I would prefer “legalese”. Something that a hospital CAN’T ignore. I’ve since learned a little more on the topic, though, since I posted my question.

  1. The phrase I was searching for is “advanced directive”, not a living will. I knew it wasn’t correct when I said it, but couldn’t think of anything more appropriate.

  2. Advanced Directives are at the mercy of your state, so there’s no such thing as a “one size fits all” form. Many states require you to submit their official form to the correct authorities. Even without an official form, it is still considered a legal document that requires witnessing and probably notarization. The notarization will probably be difficult at this time.

  3. A hospital is not actually REQUIRED to follow your Advanced Directive. They are supposed to facilitate your transport to a different facility if they feel they can’t comply, though. However, they typically WILL follow your Advanced Directive, if possible, because they’re granted legal immunity from anything that results from giving you the care, or lack thereof, that you requested.

  4. Advanced Directives are NOT limited to end of life scenarios, as many believe, but can apply to many different circumstances.

I will definitely be looking more into this.

Your post is statement of all the more reason to let us manage our T1D while an inpatient (of course this assumes being conscious). I’ve never understood my health pan’s hospital refusal to let us manage our T1D. I mean, doing our own monitoring (far more frequently than hospital staff can) our pumps and CGM’s actually makes their job easier. I am perfectly willing to share my readings and doses etc with staff.

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I think that as time moves on, you are VERY likely to be doing your own care, unless you are unconscious. Then, probably, no one is doing care.

From your lips to God’s ears.

You may also be heavily medicated, but conscious. So best to have family member or friend present that you designate as also able to manage your insulin, etc included in your documents.

They are not allowing family members present in the hospital. Expect to be on your own. We are in army medicine mode. I want to set expectations somewhere realistic. That is really important right now.