Yes, this HAS been mentioned in one of the posts above. Bernstein even has a form of that letter in his book “Diabetes Solutions” for people to customize and have their doctors sign in case of hospital admission.
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Thanks @mohe0001 for verbalizing this for the gluco-norms. I might with permission need to pass this around (with proper credit of course). I could not even have begun to write this, yet you definitely captured what I am feeling!!! TY 
@Rob5 like you I have had recent hospitalizations (3 this year alone). As they were pre-planned, I specifically ensured that I would be able to manage my own insulin at all times. It took an enormous amount of leg work prior to hospitalization - way too much in fact.
As an aside, I had to work with my surgeon because his preferred hospital would not let me manage my own insulin - a no go for me. The 3rd hospital that he had privileges at would let me mange my own insulin, and I have gone there 3 times this year for varying length stays. No one knows my insulin needs better than me - no one - not even my endo. I refuse to stand back and witness the timidity of hospital personnel administer just enough insulin to keep me alive because of fear of Medicare reimbursment santions due to hypoglycemia. Even with Dia-technology at my side and implanted in my body, the hospitals refuse to recognize the benefits of said technology. They would rather put their collective heads in the sand rather than confront the here and now. I suspect this is partially due to the bell curve of patient engagement. Those of us on a forum such as this tend to be more informed and engaged in our care. Since hospitals have to keep Medicare happy so the cash keeps rolling in without financial sanctions, hospitals must cater to the lowest common denominator - those of us who just take a pill in the am and don’t do anything else to participate in their diabetes. We all know people like that. I know more than a few - people that don’t care, people that have given up, and people that have yet to become engaged in their care. The hospitals have to deal with both disparate groups using the same policies. Not an easy task today with so many litigious parties.
Finding a progressive policy hospital is just part of the due diligence I did prior to surgery. I didn’t have to, I could have gone DKA in the hospital, but that’s not what i want out of my life. I researched and became a PITA as an advocate for myself to ensure the care I felt i deserved for myself. I know myself better than anyone - i have had +50 years to learn, and +20 as a diabetic. I’m not giving up control of my insulin willingly to anyone unless I am unable to speak for myself. To that end, I have my ICF, DIA, and other pertinant info in both my wallet and on Medic-Alert (which has saved my sorry butt more than once). I want to be heard loud and clear.
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@laceyma your neighbor most likely got a more thorough education with you than the medical system who because of lawsuits can’t discuss some aspects of diabetes. Your neighbor is a very lucky neighbor that he is your neighbor. If you haven’t already, you should give yourself a big pat on the back for being a great neighbor!!!
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There is one, in LA. Halpern is his last name, can’t remember the first name. He often is a speaker at TCOYD - you can find him there. Has T1 himself and is brilliant. I don’t have time to find it myself right now
They weren’t interested.
I wish it were that easy. The hospital I HAVE to use (health plan) have a policy of “…surrender (their word) pump, insulin, CGM and meter…” NO way in hell am I gonna be admitted. Stitch me up and parole me - even if it is AMA.
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hehehe, it does make you sound like a POW or a gun-toting mafia boss, doesn’t it? Hospitals are so wacky. You are a hardened diabetes criminal on the run, artwoman. Hunted, but not yet apprehended.
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Oh yeah, and I have trained my
“moke” (my husband 6’6") to stand by me - all he has to do is stand there, and puff himself up. His pockets are so big (cuz his clothes are so big) can hold all of my D stuff - and them some. I realize that PWQD’s who are on various fourms and active in the DOC are more pro-active, own their D, and are very well informed (example, when I was first Dx’d, the nurse insisted that the very tips of fingers were the only places to do a fingertick, it took a fellow PWD1 to explain that the sides of fingers are good and less painful… Why do you think blind people use the tips to read braille?)
I have often said that there are HCP’s out there who truly believe if a person is Dx’d with any type of D, they MUST be dx’d with 2 co-morbidities: stupid and lazy. The lack of trust and respect for patients with D is worse than I’ve seen for any other chronic medical condition. We complain about the general public saying stupid things about causing/curing D, we get it from HCP’s as well. I wish I didn’t need an Rx for my insulin and supplies.
Brilliant strategy with your husband. Your plan and execution are so flawless!
I think its interesting that you say that. My best friend used to say that.
I agree that we should work on the Rx thing next in the legislature. They have built a system that makes it prohibitively difficult to survive. The medical system has become unethical. They are supposed to be our advocates.
I also think the system’s requirement (especially for people on Medicare - I will never qualify for medicare which is a good thing - and another story) of in-office appts every three months is ludicrous ad a waste of time and resources.
I get the lab draws, I use the info myself. But I don’t need to spend 2 hours - of which 15 minutes is the actual appt. Almost 40 years with T1D, and no issues (which I know from the lab draws) I’m good. If three others like me forego the in-office appt, that means an hour is available for the person who needs a longer appt, or someone newly Dx’d. Saves me time for the trip to the Endo office , and saves the healthcare system $ as well.
I’ve proved to them that my uploads from pump/CGM every 2-3 weeks, which is automatically shared to the Endo practice and an annual phone appt works for everyone. To look at me you wouldn’t think I am a formidable force of nature, but once in my presence: heh heh heh
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My wife and I, both on Medicare and pumps also must visit our doc every 3 months. That means lab tests as well. And fasting for some of those tests. We also think it is a waste of everyone’s time and money. Personally, I think a 6 month interval would be a reasonable compromise.
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I agree that seeing my endo every 6 months would be better for both of us. I don’t do lab work at all of the visits and only need fasting once per year. And even a lot of the medical literature now says that fasting doesn’t make a difference for cholesterol tests. Interestingly at my endo visit last week I was fasting and had some of my annual lab tests. They didn’t ask me if I was fasting so maybe I didn’t need to be.
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I agree. It should be up to patient and dr to decide, with Medicare setting max, or “as medically necessary”.
I am not on medicare, and see endo 2x per year.
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It does seem a waste if you have been a type 1 for a while, and are stable, especially if your endo department is reachable by e-mail like my prior one was. You could just get blood work done, get the copies of it and they could just contact you if something is wrong. Save everyone a lot of time and money. Twice a year as a check up, but reachable in case something goes wrong or you need help.
I suppose the biggest problem is then distinguishing who is the person that needs that help. I have run across several people that drop to low (or too high) and say they need to talk to the doctor about adjusting their levels, when even at the beginning I adjusted my own levels. But some people want a doctor to decide, it seems to me you need to learn as a type 1, at the beginning I get it, but later you are at a disadvantage if you don’t learn how to adjust levels yourself.
But we are a more proactive lot here!
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The first thing out of the lab techs mouths’ when we get there are always “are you fasting?”. That’s before they even know what tests are being done.
the way I look at it is that if a T1 doesn’t learn how to adjust things for themselves after a couple of months of starting to pump, or after a year or so after diagnosis, they’ll likely live a shorter and more chaotic life. It blows my mind that there are T1’s that could possibly be content to wait for a doctor to call them back when their bg’s aren’t where they should be. This is a disease that needs 24/7/365 care and adjustments. It’s not something that waits for a doctor call-back.
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I am lada, for 27 years, still MDI, and on Medicare. My endo now says I only need to come in every 6 months because I am doing so well controlling D. So far no issues with Medicare
Re issue of hospitals, last one did put me in DKA
i’m with others, if they won’t let me control, then I am out of there AMA.
My spouse and kids have been told same.
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You say you are on MDI. I believe the 3-month doctor’s visit is a requirement only for pumpers when Medicare paid for their pump and is paying for their insulin and pump supplies.
Oh, and about the fasting for labs, that is for the lipids. Since I refuse to take a statin, they no longer include the cholesterol test in my annual labs. Hence, no fasting.
But I agree that it is a waste of time and money to see your doctor every 3 months. My CDE and I spend most of the visit discussing our farm animals. 
LOL! 80% of the time I spent at my endo’s office also was spent on non-diabetes subjects. Sadly, he just retired and I’ve no idea if I’ll like the next endo who I have an appt. with in about 10 weeks.
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