Living With Diabetes Complications
Six stories of patience, perseverance, and positive thinking
You’ve heard the story of the big bad diabetes complications. Details differ, but the moral is the same: Once you develop a complication of diabetes, the tale goes, your life is pretty much over. True, complications of diabetes do, well, complicate your life. But it’s not all doom and gloom. In fact, the six people on these pages show that life really does go on.
61 | North Hollywood, Calif.
Bruce Peterson had more than a decade’s experience with type 2 diabetes when it became hard to catch his breath. The swelling in his legs got so bad he could press a finger to his skin and see an indentation. Peterson’s doctor sent him to the emergency room, where he was diagnosed with congestive heart failure, a condition in which the heart is unable to pump enough blood to the body.
Peterson is familiar with the toll diabetes complications and related conditions can take on a person’s life. He has neuropathy, peripheral artery disease, and kidney disease; lost two toes; and was forced to give up an elementary school teaching job he loved to care for his health.
But something he didn’t expect? Conflicting treatments. Regular exercise and weight control are key for heart health, but Peterson was bedridden in a rehabilitation facility for seven months with an infected foot ulcer. The lack of exercise, plus the high-calorie meals on offer there, pushed the normally 160-pound man over the 250 mark. “It’s a juggling act where you’re juggling with chainsaws,” he says.
But Peterson has patience and persistence. And, most important, he takes an active role in his own health. “I’m like the manager of a baseball team,” he says, assembling health care providers to help him with diabetes complications. “I’m trying to win the series, which is … living longer and living better.”
Despite his health issues, Peterson remains positive. “My life isn’t over,” he says. “My life working with kids isn’t over. My life being with my family for sheer enjoyment isn’t over. My sense of purpose isn’t over.”
40 | Boulder, Colo.
Brian Mehaffey tried to do everything right. After being diagnosed with type 1 diabetes a week before his 18th birthday and having to learn diabetes care while starting college—which, admittedly, led to a four-year span of not-so-great blood glucose levels—he took his health into his own hands. “I finally learned what to eat and how to eat and the amount to eat,” Mehaffey says.
Then came the kidney damage. “I understood I wasn’t educated enough when I was younger, but I learned,” he says. “So for me to get kidney disease was surprising. I exercised. I ate well.” In 2008, at the first sign of kidney damage, Mehaffey was given medication. Three years later, he was on dialysis.
He faithfully attended a nearby dialysis center, restricted himself to 32 ounces of water daily as directed, cut back on the amount of salt he ate, monitored his potassium levels, and ate enough protein (which is often necessary for people on dialysis). He still snowboarded and skied, though not as much as he used to; even climbing stairs and taking long walks became tough as the kidney disease worsened. And for two years, he waited patiently for his name to be called from the kidney transplant list. Three times he arrived for a transplant only to be sent back home when the organs weren’t available.
On Dec. 9, 2012, Mehaffey got the call. At 7 a.m. he was in surgery for a kidney-pancreas transplant. “By 1 p.m., I was no longer diabetic and I no longer had kidney disease,” he says. Six days later, Mehaffey was out of the hospital.
Old habits are hard to break, and Mehaffey says living without diabetes or kidney disease took some getting used to. “It was hard for me at first not to check my blood sugar. I’d go into my room and test it anyway,” he says. “I almost have to identify myself as Brian, not diabetic Brian.”
Mehaffey will have to take anti-rejection medications and monitor his replacement organs for the rest of his life, but says it’s a small price to pay for his health. And now that his wife, Maria-Jose, is pregnant (she’s due this month), he says the significance of his transplants is even greater. “Now I know I’m going to be here for my son,” Mehaffey says. “I can’t say how thankful I am for the change.”
For more information on kidney disease, check out the National Kidney Foundation's website.
59 | Abilene, Texas
Retinopathy and macular edema
It started with blurry vision. Bob French, who at the time owned a trucking company, spent most of his time behind the wheel, so he noticed when signs became harder to read. After a trip to the eye doctor, he was back on the road with new eyeglasses.
But weeks later his eyesight worsened. In his right eye, an empty spot appeared in the center of his field of vision.
A month later, at a truck stop in the middle of nowhere, French lost vision in his left eye. “Here I am, 2,000 miles from anybody,” he says. “I had absolutely nobody to call.”
French had had type 2 diabetes for years, during many of which his blood glucose was so elevated his meter just read “HI.” When diagnosed, French had balked at the insulin he was prescribed. He didn’t want to use needles, but more than that he couldn’t drive commercial vehicles while taking insulin without a hard-to-obtain waiver. When his blood glucose landed him in the hospital, French was prescribed oral medications, which controlled his diabetes without costing him his job. Everything seemed to be fine—until he went partially blind.
French made an appointment with an ophthalmologist and retinal specialist. “He said, ‘Man alive, you have a million things going on with your eye,’ ” French says. The diagnoses: retinopathy, damage to the blood vessels in the eye, and diabetic macular edema (DME), swelling of the part of the eye responsible for straight-ahead vision.
For French, things got worse before they got better. Retinopathy and DME treatments were costly, and he slowly sold his trucks to pay for them. Ultimately, he filed for bankruptcy. In 2012, French couldn’t see well enough to drive and had to give up his license.
Nearly 20 surgeries after his diagnosis, the retinopathy in his left eye has improved considerably. French still is legally blind, but he is able to do everyday activities, such as cook his own meals.
His diabetes control has also improved; he’s maintained a 6.5 percent A1C for a year. “I used to be real proud when I saw 9.5,” says French, who now uses insulin and oral medications.
Though retinopathy and DME undoubtedly changed French’s life forever, he stresses that even tough situations may not be as terrible as you envision. “You imagine the worst because you’re seeing the worst,” he says. “If this were a few years ago, I would have gone blind. The technology with this stuff has gone so fast, come so far. I’m living proof of it.”
Learn more about diabetes-related vision loss and find a retinal specialist online at DiabetesEyeCheck.org.
33 | Bensalem, Pa.
When Vince Floyd’s back began to ache, his doctors had a simple diagnosis: A previous back injury was acting up again. It wasn’t until the pain migrated to his legs, feet, forearms, and hands seven years ago that his doctors decided it was neuropathy, or nerve damage. “It was pretty severe,” says Floyd, who was diagnosed with type 1 diabetes at 6 months old. With a dead left ulnar nerve, Floyd has no strength in his arm, so he’s unable to open doors or spread his fingers. And because he has no feeling, he’s burned himself numerous times. He also experiences numbness in his right leg and has a hard time lifting the front of his left foot, which is why he uses a foot brace that helps him walk without tripping.
But most challenging of all is the pain. “It’s a struggle every day. I know every day I’m going to get shocked so many times. I’m going to be in pain,” he says. There’s no telling what might set off the nerve pain, but certain things are a given: The metal of his foot brace is hard against his skin and, if worn for longer than an hour, will trigger the neuropathy. Nighttime also brings on the pain, which is why Floyd requires medication to sleep. Sometimes, it’s a faint touch that riles his nerves; slight movements of the bed sheets could provoke his neuropathy.
“When it’s really bad and at its absolute worst, it’s like they’ve strapped you into the electric chair and you don’t die and it doesn’t stop,” he says. It took time for Floyd and his doctors to settle on a cocktail of medications that ease his nerve pain. “I’m at this stage where, yeah, it bothers me, but I’ve dealt with it. I’ve got what works for me and for pain.”
Floyd has been on disability for the past three years, but he stays active. He walks and rides his bike to maintain muscle strength and spends his free time as a motivational speaker for high school students. Plus, he fits in more quality time with his wife, Sandy, who has been his rock through the health problems.
Floyd understands well the importance of family support when it comes to dealing with diabetic complications. As he dealt with his neuropathy as well as retinopathy that left him blind in one eye, Floyd battled depression that was lifted as family members gave him encouragement. He says he’s now completely at peace with his life.
“I can deal with pain, even if it’s every day for the rest of my life,” he says. “There’s a lot more I want to do in life. Neuropathy isn’t going to kill me. It’s just pain, and I can get through that.
54 | Ebensburg, Pa.
Kelly Booth spent the year before she was diagnosed with gastroparesis mostly nauseated, barely eating, and on a blood glucose roller coaster. She had been taking insulin as prescribed for her type 1 diabetes, but constantly went low after eating only to have skyrocketing blood glucose later. In 2003, 10 years after she was diagnosed with peripheral neuropathy, Booth was diagnosed with gastroparesis, delayed stomach emptying. It’s a result of autonomic neuropathy, damage to nerves that control involuntary bodily functions, including stomach emptying.
The diagnosis didn’t solve her blood glucose problems, though. “[The doctors] knew I had gastroparesis, but they didn’t know what to do,” she says. “I was literally seeing [blood glucose readings] from 30 [mg/dl] to 300 [mg/dl] every day.” Finally, she stumbled on a post about gastroparesis on an American Diabetes Association online message board, which suggested splitting mealtime insulin doses. Cue the hallelujahs.
Booth now keeps her blood glucose steady by taking about 1 unit of insulin with her meal, then injecting another unit or so one hour later, and then 1 or 2 units more two hours later for a total of about 3 to 4 units. Over the years she’s gotten good at predicting when her blood glucose will rise by testing frequently and eating the same foods again and again.
Booth’s diet mainly consists of small meals of eggs, cheese, lean meat, and nutritional drinks. Fruits and veggies are her kryptonite because of their high fiber content, which can slow stomach emptying and cause pain. “It’s hard to give up foods you love, but in the end, it’s worth it,” she says.
Even with such a strict diet, Booth tries to focus on the positives—such as the fact that she can indulge now and then with a green salad. “I honestly didn’t think it would get better,” she says. “Now I at least get a treat with [a salad]. People laugh, but it’s a treat for me.”
51 | Concord, N.C.
Poor wound healing
NASCAR artist Sam Bass can attest to the fact that sometimes, with type 1 diabetes, it’s the little things that cause the biggest problems. In 2005, he was running in Daytona Beach, Fla., before he headed to the track to immortalize stock-car racing with his paintbrush. A tiny blister formed on the bottom of his foot, so he cleaned and bandaged it, then went to work.
“I really didn’t think a whole lot about it until it got infected,” says Bass, who at the time had only mild neuropathy in his feet (it’s since worsened). “It’s just unbelievable how that one little thing turned into the better part of a three-year ordeal.”
By the time Bass went to the doctor, the infection had spread. He had one bone in his toe surgically removed (saving the toe) and spent the next few months hobbling around on crutches. “I kept telling myself, ‘Well, I’m not walking on it too much. I’ll be fine,’ ” he says. But the wound continued to worsen—he lost four more foot bones over time—and the constant infection raised his blood glucose, which in turn limited his body’s ability to repair itself.
Three years after that tiny blister formed, Bass decided on amputation. His only other option was a surgical procedure with no guarantee of success and a four-month recovery time that would keep him from the races at Daytona.
In 2008, Bass’s left leg was amputated below the knee. Two months later, with the help of a carbon-fiber prosthetic, he was climbing three sets of stairs. The following month, he was back at work.
The amputation helped stabilize his blood glucose by ridding his body of infection, and allowed Bass to get on with his life—without the constant doctor and hospital visits. Bass now uses his experience to reach others, speaking openly about his amputation and visiting with soldiers who have had limbs amputated.
Looking on the bright side has been Bass’s approach from the get-go. “It is a very, very scary thing to even think about losing a part of your body that has been with you from day one,” he says. “But the advancements in prosthetics are amazing, and you’re able to do whatever you did before you lost your leg.”