How to Beat 'Deniabetes'

Mary Greeley helps a Story City man face the realities of his disease.

By Steve Sullivan

Damon Johnson gets some
diabetes management advice from
Sarah Haveman RD, LD, CDE, diabetes educator.

Several months after his right leg was amputated, Damon Johnson started a lawn care business.

He got one of those zero-turn riding mowers, and had a friend film a commercial for him. It showed Johnson on the mower, shot from his left. He looked at the camera and said, “If your yard is rough and bumpy, don’t get grumpy ….” And then he turned the mower to display his amputated leg and delivered the memorable punch line … “call Stumpy.”

It got him some business and more than a few laughs. Johnson’s sense of humor and good-heartedness have served him well during a stretch of significant health setbacks, complicated, he admits, by a case of “deniabetes.”

He didn’t invent that term. It’s a condition in which people with diabetes fail to accept the seriousness of their disease and its management. It’s a dangerous condition and one that people who treat diabetes see all too often.

Johnson learned that the hard way. Fortunately, he’s beaten “deniabetes”thanks to a coordinated team of wound care and diabetes experts at Mary Greeley Medical Center.

“It wasn’t easy but so many people stood by me. My friend Kayla Grimes got me to my appointments and put up with my bad moods,” he said. “The staff at the Wound Clinic and the diabetes center kept me focused on my recovery. I couldn’t have done it without them.”

Diagnosis and Amputation

Johnson has worked in the facilities department at Iowa State University for several years. In 2012, he was driving a dump truck from Ames to Gilbert and found that “I had stop to pee every 15 minutes.” He eventually found himself in the emergency department at Mary Greeley. He was hospitalized for a few weeks and his blood sugar was “off the charts.” He was eventually diagnosed with diabetes.

“I was shocked,” he said. “There’s no history of diabetes in my family.”

He went on disability for a stretch of time to get his disease under control. He checked his blood sugar, changed his diet, started counting carbs. He got back to work and over time his commitment to controlling his disease faded.

A few years later, Johnson’s feet were hurting from diabetes-related nerve pain. He started wearing more comfortable shoes and tried to be better about checking his blood sugar levels. In November 2016, he experienced pain shooting down his right leg and a lack of a pulse in his right foot. He was taken to a Des Moines hospital by ambulance and diagnosed with blood clots in his groin. While it is unclear whether diabetes played a role in this medical emergency, the disease can cause circulation issues, and lead to other
conditions or complicate existing ones.

Attempts to treat the clots failed and in December 2016, Johnson’s right leg was amputated below the knee.

It was a depressing decision to make, said Johnson, “but I was in so much pain I decided I had to deal with it. I’m still amazed at myself for how well I handled it. I had good days and bad days, but never used that as an excuse. I had to be motivated to feel better.”

Wound Treatment

Damon Johnson (center) is surrounded by his
Wound Clinic and Diabetes and Nutrition
Education Center care team: (left to right)
Donette Tilley, BSN, RN, CWCA;
Meredith Moore, MSN, RN, CWOCN;
Sarah Haveman, LD, RD, CDE;
Jamie Warg, MSN, RN, CWCN;
Linda Wuebker, BSN, RN;
Dr. Mark Vandenberg, McFarland Clinic surgeon;
and Deb Beelner, BSN, RN, CWS.

In February 2017, he was referred to the Mary Greeley Wound Clinic for treatment of a dehiscence, which is an opening in an incision.

These can occur for a variety of reasons, but, again, diabetes may have contributed. The disease can impact blood flow, which can lead to infections and poor wound healing. He was treated with a debridement procedure, which removes dead tissue and other material around the wound, speeding up healing and lessening infection risk.

Wound Clinic staff did a medication review and looked at Johnson’s lab work. His hemoglobin A1c was elevated. A hemoglobin A1c test indicates your average level of blood sugar over a period of time. Johnson’s was over 10 percent. A level that high is serious and would impact the quality of healing.

Wound Clinic staff learned Johnson had an insulin pump but had stopped using it. He also wasn’t using any oral medications.

Typically, a patient like Johnson would be referred to the Mary Greeley Diabetes and Nutrition Education Center. Often though, these patients don’t bother to follow through on the referral. That darned “deniabetes” again.

So the Wound Clinic and the Diabetes and Nutrition Center staff hatched a new approach. The diabetes educator from the center would come to the patient in the Wound Clinic instead.

“Damon was one of the first patients who was part of this collaboration,” said Jamie Warg, MSN, RN, CWCN. “We don’t do this with every patient, but definitely with patients who are high risk. They are a captive audience.”

Back to the Pump

The Wound Clinic reached out to diabetes educator Sarah Haveman, RD, LD, CDE. She was familiar with Johnson, having seen him at the Diabetes and Nutrition Education Center after he was first diagnosed.

“Diabetes kind of stinks and some people don’t continue their sessions for one reason or another,” said Haveman. “Damon definitely had ‘deniabetes,’ which is not uncommon. He didn’t want to truly admit that he had diabetes and so I didn’t see him again until he’s in the Wound Clinic.”

Her task was to help Johnson lower his A1c closer to 7 percent through glucose management and nutrition advice, and by getting him back on an insulin pump. An insulin pump provides a constant drip of insulin. It also will provide a larger dose of insulin when the user enters an elevated blood glucose requiring some “correction” insulin or enter the amount of carbohydrate they are about to eat to cover the rise to the blood glucose level that occurs after eating these foods.

“He had ordered a pump years ago, but it was sitting in a closet. He’d never started it, so I said ‘Ok, let’s get started,’” says Haveman. “A diabetes diagnosis is for the rest of your life. If you want to have good management, you need to be mindful of your food choices. You’ve got to count carbs, check your glucose. Diabetes is a lot of work but devices can make it easier – a little easier, because you’ve still got to do it.”

Johnson admits that he was scared of the pump. “I didn’t want to work with it. I was worried about managing it and pumping too much insulin,” he says. “Sarah walked me through it and once I committed to it again I was good.”

“He’s young and motivated and we knew he would use his prosthetic and get back to his life,” says Warg. “We see so many amputees who never get that prosthetic. It was his choice ultimately, but he started going to diabetes education and using that new pump. We put it all in front of him and he saw the value in taking care of himself.”

The insulin pump has made managing his disease less of a chore. He’s also cut back on soda and is limiting his carb intake. He has a prosthetic leg now. It was awkward at first. Mary Greeley’s Rehab & Wellness has helped him adjust to it.

Johnson has moved beyond “deniabetes.” He’s also moved past just driving that lawn mower. He’s behind the wheel of his car again, after learning to drive with his left foot.

“It felt goofy at first, and a little scary but I got used to it,” he says. “I drove slow in town at first and then got brave enough to drive into Ames for doctor’s appointments.”