For people with type 1 diabetes (T1D), our daily efforts to juggle the demands of this high-maintenance disease are largely fueled by wanting to prevent the development of “diabetes complications.”
Indeed, those long-term complications are the biggest fear of many people living with any type of diabetes. Thankfully today there are effective treatments, and many people have learned to live well with these additional health conditions.
One of those people is John Wiltgen, an award-winning Chicago-based home designer who’s endured T1D for over 50 years — diagnosed well before you could accurately measure your own blood sugar level yourself. He’s juggled a variety of complications, including blindness, an amputation, several heart attacks, and kidney failure.
DiabetesMine spoke with him at length recently, to learn about how he’s coped. What may strike you is his lack of self-pity or excuses; instead, he’s focused on the “miracles.”
Before we dive into his life, there are some important things to know about diabetes complications — starting with the fact that, thanks to modern diabetes technology and newer insulins, most of us can work to prevent these complications by keeping our
Quite simply, persistently high blood sugar levels lead to additional health problems throughout your body in two ways:
- The excess sugar in your blood weakens the walls of your blood vessels which restricts blood flow. This reduced flow of blood means that an area of your body (eyes, legs, etc.) isn’t getting enough oxygen, as well as other vital nutrients your blood provides. This also increases your blood pressure, which can damage other small and large blood vessels throughout your body.
- Over time, the excess sugar in your blood accumulates on the nerves throughout your body, interfering with their ability to send signals and eroding them to the point of destruction.
This restricted blood flow and residual damage causes things to break down, such as the vital tissues in your eyes, the nerves in your legs and feet, or the healthy functioning of your kidneys. (See details below.)
The good news is that well-managed diabetes is rarely the cause of anything. The more effort you put into keeping your blood sugars in a healthy range, the more you prevent the likelihood of developing complications. And even if some damage is detected, taking action immediately can help to reverse or stop the development of existing complications.
Because diabetes complications are largely the result of persistently high blood sugar levels, they can affect both types of diabetes equally. You can take this self-assessment quiz to help determine if you might be experiencing early signs of diabetes complications.
Here is a brief look at the most common diabetes-related health complications.
- Nephropathy. Also known as diabetic nephropathy and diabetic kidney disease, it accounts for nearly
half of all casesof kidney failure in the United States. It develops as a result of persistently high blood sugars damaging three aspects of your kidneys: blood vessels, nerve endings, and urinary tract.
- Cardiovascular disease. Also referred to as heart disease, or CVD, it’s usually caused by the gradual narrowing — or a complete blockage — of the blood vessels that supply your heart with the blood (and oxygen) that it needs in order to function. This is also the number one cause of heart attacks.
- Peripheral neuropathy. Also referred to as diabetic neuropathy or PN, this diabetes complication is the result of persistently high blood sugar levels limiting healthy blood flow and eventually damaging the nerves throughout your hands, fingers, toes, arms, feet, and legs.
- Eye diseases (retinopathy, macular edema, glaucoma, cataracts). When your blood sugar levels are persistently high, the excess glucose and pressure on the nerves, blood vessels, and other structures in your eye can become damaged, swollen, burst, and leak fluid into your eye.
- Periodontal disease. Gum disease and other oral conditions can develop when the nerves and blood vessels throughout your gums, teeth, tongue, and saliva are damaged by persistently high blood sugar levels.
- Skin conditions. There are actually a dozen different diseases and infections that can develop in and on your skin as a result of persistently high blood sugar levels. Chronic itching, severe blisters, trigger fingers, discoloring, bacterial and fungal infections, and more.
- Gastroparesis. Also referred to as “delayed gastric emptying” can develop in people with diabetes when persistently high blood sugar levels damage the nerves and blood vessels in your digestive system.
- Hearing loss. Also the result of persistently high blood sugar levels, diabetes-related hearing loss develops when nerves and blood vessels throughout your entire auditory system are damaged.
Over the last 3 decades, John Wiltgen has been known to many — including John Cusack and Steve Harvey — as a remarkable home designer and builder. Unbeknownst to most of his clients, this Chicago-based designer is also legally blind, recovering from a kidney transplant, and constantly battled severe infections in his leg before finally undergoing an amputation.
“When I was diagnosed at 8 years old, my parents were told I’d be lucky if I lived to be 30,” recalls Wiltgen. “Here I am at 61 years old. I’m still here!”
With over 45 awards for his work in home design, T1D was clearly no match for Wiltgen’s perseverance.
However, 20 years of dangerously high blood sugars have taken their toll on many parts of his body despite leaving his spirit, and his sense of humor, well intact.
“There was no such thing as checking your blood sugar at home in 1967,” explains Wiltgen, who was diagnosed that year during the week of Christmas. “You peed in a cup, used an eye dropper to put 25 drops of urine into a test-tube, added a little blue pill, and waited for it to turn color. Then you held that tube next to a chart that tells you if your blood sugar is somewhere between 80 to 120 mg/dL, or 120 to 160 mg/dL or just 200 mg/dL and above.”
It certainly wasn’t something you’d be doing 4 to 6 times a day, like today’s blood glucose monitoring. And of course, back then Wiltgen had less-than-fantastic insulin options made from pigs and cows, along with the fun task of boiling and sharpening the same syringe to use over and over for years. It would be another 10 years before synthetic insulin was created.
These factors combined with Wiltgen’s refusal to skip dessert at the high school cafeteria meant his A1C was never below 10 percent, and his blood sugar was over 250 mg/dL all the time.
While people with T1D can eat nearly anything thanks to today’s glucose monitoring technology and a variety of insulins, Wiltgen had very few tools to manage diabetes, which meant a very strict diet was largely imperative to achieve an A1C in the ideal range of 7s, or 8s tops.
As you read details of the diabetes-related complications Wiltgen has developed over the last 53 years, what you will not find is much self-pity or any excuses. In fact, Wiltgen’s story should really start with what he told DiabetesMine early in our interview:
“I have been given so many miracles in this lifetime, I know that they can be real.”
By his early 20s, Wiltgen began experiencing burst blood vessels in the back of his retina, creating periods of blindness when the blood spreads and blocks your vision.
“Sometimes a blood vessel would break, leaking one tortuous drip at a time slowly darkening my vision. Maybe over a period of weeks. Other times a blood vessel quickly poured blood into the retina producing thick, heavy swirls much like a lava lamp within 10 minutes of it breaking,” explains Wiltgen. “I couldn’t see. It would take weeks or months for the blood to be reabsorbed. And then sometimes, the blood sticks to the ‘vitreous gel’ in the back of your retina, and then it doesn’t get reabsorbed.”
Wiltgen had 11 surgeries when he was in his early 20s for this recurring issue.
“Glaucoma and cataracts can block your vision, too, and develop earlier in type 1 diabetics,” recalls Wiltgen. “I cannot deny that for me, this was because I didn’t take as good care of myself in my younger years as I should have or could have.”
By 25 years old, Wiltgen’s doctor was able to save his vision in one eye though the retina tore right down the middle of the other leaving his left eye totally blind. Years later, he lost the peripheral vision in the other eye. He describes the effect as having “tunnel vision”; he can only see straight ahead.
“Try looking through a rolled up magazine,” explains Wiltgen, “that’s what it’s like.” But Wiltgen was determined to never let his clients know — he continued to design and build award-winning houses with the support of an incredible team.
“I’ve taken clients out to restaurants and my menu is upside down the whole time,” laughs Wiltgen, who would play it off as though he was just joking around, then order whatever salmon special the waiter mentioned.
Reluctant to use a cane today, he also walks arm-in-arm with his husband Stephen or a friend when venturing down the city streets of Chicago.
At 26 years old, Wiltgen was told his kidneys were failing from diabetic kidney disease. His internist shocked him when he said Wiltgen would need a transplant.
“In those days, the worst part,” he says, “was waiting for my kidneys to totally stop working. They would not perform the transplant until then.”
“In those days, the odds were only 60 percent that it would work. And if it did work, the transplant department at the University of Minnesota in Minneapolis estimated it would last 12 to 15 years,” says Wiltgen, who recalls feeling as though a black cloud was following him everywhere he went during this decade of his life.
“But I was lucky, because my entire family volunteered to be tested as potential donors. Three family members, including mom, were deemed viable donors.”
“My mom told the doctors that if her age at 50 years old wouldn’t limit the chances of the transplant’s success, she wanted to be the one to donate.”
Wiltgen told his clients he was taking a vacation to Acapulco, and was back at work within 8 days of receiving a kidney from his mother. But it took mom 2 months to recover.
“They literally sawed her in half, from her belly button to her spine.”
Thirty-four years later, mom’s kidney is still keeping her son alive.
“They predicted 12 to 15 years, and I still have that kidney,” says Wiltgen with everlasting astonishment and gratitude. “Why? That’s the $10 million question. My mom is 84 years old today. I’ve tried to make sure that I lived my second life worthy of all my mom has given me.”
As a kidney recipient with other diabetes complications, Wiltgen says he currently takes 13 pills every morning and 11 pills every night. He says that while a kidney transplant fixes one problem, it causes many others.
“From the antirejection drugs I have been taking for my kidney transplant, I came down with three different kinds of pneumonia all at once,” recalls Wiltgen. He was in the intensive care unit for 3 weeks and nearly died. “Then, I got appendicitis. It ruptured in the hospital but they could not operate immediately because I am on blood thinners. Again, I almost died.”
At 30 years old, Wiltgen experienced his first heart attack — but it was silent.
“I didn’t feel it. It didn’t hurt,” recalls Wiltgen, who’d lost so much sensation from nerve damage (neuropathy) throughout much of his body. He’d go on to experience two more heart attacks and have multiple stents surgically placed to hopefully prevent anymore.
Meanwhile, Wiltgen’s neuropathy had also worsened to the point of not even realizing he’d been walking all day long in a shoe with his house-key inside of it.
With severe loss of sensation in his feet and legs, it’s not surprising that skin infections came, too. An infection in his skin eventually spread to the bone in his lower leg, called osteomyelitis.
Despite his doctor’s adamant advice to amputate, Wiltgen fought chronic infections with a PICC line surgically inserted into his arm so he could deliver intravenous mega-strength antibiotics twice a day at home.
“I traveled the world that way,” Wiltgen says. “For 17 years with a PICC line in and out of my arm. I taped it up and did my best to hide it in my sleeves, always worried what my clients would think if they knew.”
A work-related trip to Africa was where Wiltgen realized he’d met his limits.
“I had a 105-degree fever. One of my business partners in a real-estate development company we formed in Lagos (Nigeria) was constantly texting my then-boyfriend. Stephen was a head of an insurance company’s ‘wellness’ department and a former ICU nurse,” says Wiltgen. “The airlines didn’t want to let me on the plane because I looked so sick they were worried I had Ebola.”
Amputation became an unignorable reality.
“I was too vain,” explains Wiltgen regarding 17 years of a PICC line over an amputation. “Just the thought of not having my leg anymore, I couldn’t imagine what I was gonna look like or if my boyfriend would still want to be with me after my leg was chopped off?”
(Indeed, Stephen’s devotion to Wiltgen extended far beyond his legs. The two were married in 2018. Wiltgen says Stephen has saved his life many times over the years.)
Much more confident today in his status as an “amputee,” Wiltgen says he does wish he had gotten his infected leg amputated much sooner.
“It’s the fastest way to lose 12 pounds,” he jokes.
The list of surgeries and treatments Wiltgen has had over the years is impressive, to say the least:
- Two vitrectomies, a surgical procedure provided by a specialist where the vitreous humor gel that fills the eye cavity is removed to provide better access to the retina. This allows for a variety of repairs, including the removal of scar tissue, laser repair of retinal detachments, and treatment of macular holes.
- Seven focal laser photocoagulation treatments used to seal specific leaking blood vessels in a small area of the retina, usually near the macula. His ophthalmologist identified individual blood vessels for treatment and made a limited number of laser “burns” to seal them off.
- Three scatter laser photocoagulation treatments used to slow the growth of new abnormal blood vessels that developed over a wide area of the retina. His ophthalmologist made hundreds of laser burns on the retina to stop the blood vessels from growing.
- Cataract surgery to remove a clouded eye lens. “They did not replace it with an artificial lens because, if I needed more laser work, that new lens would have to be removed. So, on my right eye I have no lens. I wear a hard contact lens to correct part of my vision.”
- Kidney transplant from a living donor, 34 years ago and no dialysis required ever.
- Balloon angioplasty in which a balloon is attached to a catheter that’s inserted into an artery. Where deposits of plaque have closed off or narrowed the channel for blood flow, the balloon is inflated. “In my case, the balloon could not open two of the totally clogged arteries.”
- Two drug-eluting stents, which are devices placed into an artery to keep the vessel open, now commonly used in lieu of balloon angioplasty to treat patients with coronary artery disease (CAD), due to their better long-term patency.
- Left leg amputation below the knee (in 2012). “After being on anti-rejection drugs for so long, my immune system was compromised. I am not able to fight off infection. My bones in my left foot became infected and even with high powered IV antibiotics, nothing could ward off the infection. It was determined that I would do better with removing my left above the infection.”
He also had a severe case of pneumonia in 2017, and a burst appendix in 2019 that almost killed him.
As if that weren’t enough, Wiltgen contracted COVID-19 in 2020 and was hospitalized for 15 days. “They kept wanting to move me to the ICU but I refused. I did not want to be put on a respirator. That decision probably saved my life,” he says.
In fact, all of this “should have killed me but I am like a cockroach,” he quips.
Having almost died on numerous occasions from the various infections, heart attacks, pneumonia, appendicitis — and most recently, the run-in with COVID-19 — Wiltgen is sure of one thing: “Every day is a gift.”
“It doesn’t matter how shitty you think your life may be,” adds Wiltgen, “because the truth is, in 99 percent of the cases, there are a lot of people on the planet who are much worse off. I know this. I have been to Africa 13 times!”
The more obstacles Wiltgen faced in his health, the harder he worked to improve his blood sugar levels, too, knowing he wouldn’t make it to 30 years old otherwise.
Today, Wiltgen uses an insulin pump and continuous glucose monitor (CGM) to manage healthy blood sugar levels.
“There are still a lot of things I want to do, and one way or another I will figure out how,” says Wiltgen. “My bucket list is the size of a 55-gallon drum. Life is about choices. Everyone has a story. We could all be depressed. We can choose to be depressed or happy. Honestly, it is so much easier to be happy and more fun.”
You can learn more about John Wiltgen at his blog, “The Candy in My Pocket.” Some of his favorite Facebook support groups for those living with complications include: