Dinner is at 5, but you usually eat at 7. Your attending doctor does not do the same things as you and your diabetes team. Your attending doctor knows you have a diabetes specialist but does not call the specialist. You routinely eat a bedtime snack, but nobody in the hospital brings you one. The insulin you use is Humalog, but it is not on the formulary. Neither is your ACE inhibitor.
These are just a few of the problems that come with being a person with diabetes who has to stay in the hospital.
Protect Yourself – Participate in the Management of Your Diabetes
"I have a lot of patients go to the hospital and know something is wrong, but rely on their providers, who may not know as much," says Dr. Reza Rofougaran, an endocrinologist in Terre Haute, Indiana. "If you go to the hospital, you have to participate in the management of your diabetes."
Lynne Ryan of Culleoka, Tennessee, knows the benefits of participating in her own diabetes management while being hospital bound. Two years ago, she sailed through surgery and a hospital stay with her diabetes well under control. How? By having her admitting physician write orders that she was to 1) leave her pump in place, 2) decide on the amounts of insulin to take 3) check her own blood sugar. She followed that by communicating her situation and her needs to the staff.
"From the minute I woke up in recovery to the time I went home, the staff allowed me to check [my blood-glucose levels] and bolus what I wanted and when I wanted," Ryan says. "I did use their meters because, as a nurse myself, I understand the controls they have to do. But I used my lancets and device because they have the old ones that hurt. The hardest thing was knowing what to bolus, as I did not get a menu to choose from and I use Velosulin. All in all, it was a much better experience than I had hoped for. I believe the key was no-nonsense communication, in a friendly manner."
Hospital Personnel Not Always Diabetes Experts
Health care professionals may have a general knowledge of diabetes, but they don't know about your individual needs.
Through a series of hospital stays over the years, Sara Falconer of New York City has learned you cannot always depend on medical personnel. One of the many stories she relates involves dextrose – the "sugar water" they run into your veins.
"In a 1-liter bag of D5 percent there are 190 calories," Falconer says. "Five percent of that bag is pure dextrose; you can figure the carbohydrates. In the 1-liter bag of D2.5 percent, there are 85 calories. [My doctor] ordered the D2.5, but they put on the D5 by mistake."
One of Rofougaran's biggest complaints involves insulin dosages and timing. At one extreme, he says, a patient's sugar will be in normal ranges at mealtime, so insulin will be withheld.
However, there is the other extreme.
"A nurse will call me at 5:30 a.m. and say, 'The patient's sugar is 85,'" says Rofougaran's. "'Should I give insulin now?' And I'll say, 'Wait until breakfast is there.'"
Karen Chalmers, RD, CDE, director of nutrition at Joslin Diabetes Center in Boston, says meal deliveries are not always on time. Nurses will give patients insulin, the meal is delayed and they have the whole floor going low.
"The people in the kitchen have no concept of what it means to have the food come late," says Chalmers.
And then there's the opposite. The food comes, but the insulin is not given until later. Christine Holdstock of Morro Bay, California, had that problem when she gave birth to her son.
"While I was happy to let them give me blood tests whenever they wanted, I monitored my own blood sugars and gave myself my own shots," Holdstock says. "The nurses weren't always happy with that situation and would get mad at me for giving myself my insulin and figuring out my own dose before they got there. My philosophy was if they really wanted to manage my diabetes, they would at least show up sometime before my meals got there."
Andy Bender of Philadelphia had a hypo while in the hospital. He says he told the nurse he was having a hypo and she did not do anything.
"She had other things more important to do," says Bender, who eventually got the orange juice he needed.
Steve Sawyer of DeWitt, Michigan, believes that health care professionals don't always know what needs to be done – a belief that was strengthened following a vitrectomy a couple of years ago. A nurse concerned that his blood sugar, in the 130 mg/dl range, was "too low." She insisted he eat a turkey sandwich but not inject insulin to cover it.
"I merely pulled out my trusty pen and injected to cover the two slices of bread involved," says Sawyer. "The nurse then had a major fit over that."
The Food Wars
If you thought the "diabetes police" among your friends and family members were uninformed, tales of the "food wars" are legion when it comes to diabetes and hospitals.
"I've seen nurses go in and take food off the plate of people with diabetes, even after the dietitian has planned the meal," says Chalmers, adding that dietitians following doctor's orders will often starve people.
Yerachmiel Altman, an observant Jew from Lakewood, New Jersey, says he was supposed to be eating the hospital equivalent of TV dinners: kosher pre-packaged dinners provided for patients who keep kosher in the hospital.
"I still had absolutely no idea on the carbohydrate content," says Altman. "So I did the best thing I could think of. I had my wife bring me my meals every day."
An article in the February issue of Nursing Times, a weekly publication for nurses in Great Britain, notes, "Training programs can educate staff and prevent diabetes myths being perpetuated, such as the belief that people with diabetes should not eat sweets and biscuits."
The British Diabetes Association recommends health professionals "allow patients to keep snacks and emergency anti-hypoglycemic food supplies in their lockers and ensure that snacks are available when necessary."
Chalmers says hospitals don't seem to realize bedtime snacks are the most important snack.
"Either they don't arrive at all, which is very common, or it is the same thing night after night: peanut butter Nabs or canned fruit," she says. "People should definitely bring their own stash."
Advocate for Yourself
You can't be passive. Advocate for yourself or have somebody there who can advocate for you.
"When I go in the hospital, my husband is right there with me," says Vicki Noah of Anaheim, California. "He keeps me alive. We just celebrated our 21st anniversary, so he's done a good job."