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Be an Empowered Patient

Published: 4/30/10
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By Kerri Sparling

by kerri morrone sparling

I've never been hospitalized before.

Okay, that’s a bit of a lie. I was hospitalized twice, back in 1986, when I was diagnosed with type 1 diabetes. I was a little kid, and my parents stayed with me every night, so being in the hospital was akin to being at summer camp, only far more sterile and boring – and occasionally the staff wants to draw blood. But other than that, I don’t remember much of it.

But now I have a hospital stay under my belt. At the end of March, I was admitted to the Beth Israel Deaconess Medical Center for preeclampsia, which is a pregnancy complication that affects some women (many with diabetes); it causes the narrowing of the blood vessels, in addition to high blood pressure and diminished kidney function. It can also affect the health and well-being of both the mother and child.

So when my doctors said, “You need to stay here until the baby is born, so we can keep you both safe,” I didn’t question them. Instead, I packed a bag and said goodbye to my furry cats, and my husband brought me to my new home for the next month – the hospital.

“Bed rest” is a bit of a misnomer. There’s plenty of “bed” (as in, don’t get out of it, keep those compression boots on, do not leave the room for any journeys other than to the ice machine and back again), but very little rest. I received a visit every two to three hours by a member of my medical team, there to check blood pressure, blood sugars, baby movement, and everything in between. The hours I should have been sleeping were instead spent jostled awake by every soul in a white coat who strolled by.

(And I believe they may have thought I’d lost it after a few weeks. I had resorted to the most basic methods of entertainment – I was coloring in oversized coloring books. I was taping signs to my windows that read “Are you bored, too?” in hopes that someone in the research building across from my window would respond in kind. I spent countless hours watching HGTV and assessing if I would say yes to that dress, or if I could best the Cake Boss. My mind turned to oatmeal, and the hospital staff was starting to notice. I knew they were hip to me when they were taking my blood pressure one night at 4 a.m. and asked, “So, did anyone respond to your signs yet?”)

Being admitted is scary enough, and being pregnant, I was always worried about my baby. But part of being stuck in a hospital means managing my diabetes from within those walls and with the “help” of several medical teams. This might sound like an ideal arrangement for someone who was diagnosed recently and is immersed in the steep (and constant) learning curve that is life with diabetes, but for someone like me – type 1 for over 23 years – this has been a very difficult adjustment.

I trust my diabetes team. I’ve been a patient at the Joslin Clinic for decades, and my relationships with doctors throughout the years has been close, detailed, and honest. My endocrinologists and I have talked about everything from blood sugars and insulin-to-carb ratios to emotional stress and “real life.” My good diabetes control and my healthy emotional state are the benefits of being involved with a place like Joslin.

However.

The focus of my hospital stay is not diabetes – it’s the baby and my blood pressure – so the team of people managing my diabetes are not the ones I’m used to. I don’t know them. They don’t know me. And that is where the problems start to crop up. My regular endocrinologist (who is also an integral part of the Joslin/Beth Israel pregnancy clinic) and I have been working together for about six years, so she understands the life I live outside of her office and how it affects my diabetes management. She’s comfortable with the care I take of my disease, and she and I are able to have different opinions on what might work in my diabetes without alienating one another.

But, as luck would have it, my endocrinologist was slated to be in Italy for two weeks, leaving the day after I was admitted to the hospital. So my care was going to be spearheaded by unfamiliar doctors from Joslin who had no idea what kind of patient I was. Actually, almost every doctor I dealt with during my hospital stay was “new to me,” so I had to rethink the boundaries of my comfort zone. (I mean, they have hospital-issued underpants here. Underpants? That’s weird.) And as a person with diabetes, I have to let go of the reins a bit and let this new diabetes team take over my disease management.

Or do I?

This experience has shown me the power of the empowered patient. Even though I’ve checked in here so that the very well-informed and talented doctors and nurses can monitor my health, it doesn’t mean that my say in how diabetes is managed is completely stripped of me. They know the ins and outs of the physiological side of diabetes, but they don’t understand how it works in my body. Even though I’m not sporting “M.D.” after my name, I have every right to speak up.

For example, one of the doctors was going through my blood sugar results and noticed a postprandial result of 137 mg/dl an hour after my lunch.

“Oh, this is a little too high.”

I was surprised. “Really? That’s too high? But if I was lower, I’d end up chugging juice at the two hour mark. Honestly, I was happy with that post-lunch reading. You’re not?”

Doctors, for the most part, see things more clearly than the patient. But “clearly” doesn’t always mean “accurately.” A result of 137 mg/dl may fall outside of the range determined as “best” by the endocrinology team, but for my diabetes life, it’s spot-freaking-on because she didn’t know how quickly my blood sugars can fall. She didn’t understand how the stress of the hospitalization was affecting my control. And she had no idea what it was like to actually live with the disease. Her knowledge stemmed from research labs and a terrific education. But her “book learnin’” doesn’t outweigh 20+ years of life experience. Neither of us is more right than the other, and we both need to listen to one another. They might be the diabetes experts, but I’m the expert on “Kerri.”

In order to make sure my needs (both emotionally and physiologically) were met, I couldn’t let this disputes fester. I needed to speak up and make sure we were all on the same page. The discussion about the postprandial goals was one thing, but soon after, there was the “pizza incident.”

“So I see you had a blood sugar of 189 mg/dl at 11 p.m. I think we need to adjust your basals in the evening, based on this number.”

“I don’t agree. That 189 mg/dl? It’s post-pizza. My dad came up to visit and he brought pizza. Honestly, it was such a welcome change from this hospital food that I ate it and am fully responsible for the blood sugar bump. So no change is necessary. I just need to lay off the pizza.”

“But…”

“That’s kind of it. You can bump the basals, and tomorrow night at 1 a.m. I’ll be 50 mg/dl, and you’ll revisit the idea of lowering the basals again… which means that I’ll end up at the basal rate I’m at now, only if we look ahead, we can avoid that low tomorrow night.”

These discussions happened every single day, with my doctors examining the numbers only and with me offering the “real world” explanations that could have affected those numbers. Pizza is one variable. And when we talked about the 212 mg/dl that cropped up after my C-section date was moved up two weeks closer, I had to explain that the stress/fear response probably caused the high, not any basal or bolus discrepancy. My control throughout my hospitalization was excellent with my A1c at 6.1%, but that’s how I ran throughout the entire pregnancy. Taking their daily recommendations could have actually harmed my health outcome, so I’m glad I spoke up and preserved my good control.

It’s hard to speak up sometimes, though. It can be a challenge to let the doctors, wearing their white coats, circle around you while you lay in the hospital bed. It’s intimidating to have a medical professional tell you that something needs to be changed, even though you disagree. And especially when we are so used to self-managing our own conditions. But we, as patients, need to remember that we live 24 hours a day, seven days a week with this condition. NO ONE knows what our life with our diabetes is like more than we do. We need to be our own advocates and speak up when we feel like we need to, even if it seems easier said than done. This isn’t just limited to a pregnant diabetic – everyone with diabetes needs to become more empowered. Whether you are a newly diagnosed type 2 diabetic learning about diet and medication, or the parent of a child with diabetes who is trying to navigate the fears of hypoglycemia, you know what’s right for your body. And if you aren’t certain, don’t be afraid to ask questions. This is also true if you are a patient with type 2 diabetes who is entering the hospital for surgery or the parent of such a patient who is entering the hospital – everyone should agree about the goals and be able to monitor their own blood glucose. If it sounds like your medical team is speaking in tongues, ask them to explain more clearly. Ask questions. Don’t assume that they are always right, and that you are always wrong. It may feel strange to question the medical authorities, but remember that you have to go home and fit the management of diabetes into your life, so arm yourself with the information you need to feel confident.

Throughout my hospitalization, I have learned that speaking up and asking questions is the only way to be heard. I’m not always right, and my suggested course of action isn’t always the one followed in the end, but I’m always heard. And knowing that I’m being taken seriously boosts my confidence in the team tasked with monitoring me. We’re all working toward the same goal: my good health and the good health of my child.

And on April 15, at 9:09 a.m., my baby girl came into the world. She is healthy, strong, and loved.

 

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