My Diabetes Journey: A Cautionary Tale
BY BARBARA STEINBERGER June 29, 2022
On the day after my 60th birthday, I had a medical emergency that may have saved my life.
I was out celebrating with friends when I had (what I later found out was) a transient ischemic attack (TIA), a temporary blockage of blood flow to part of the brain, also known as a ministroke. In the middle of dinner, I started saying and doing things that made no sense. I knew what I wanted to say to my friends, but I couldn’t get the right words out. My friends decided that dinner was over, and they drove me to the hospital.
Fortunately, the symptoms only lasted for about an hour, and there was no permanent damage, according to the emergency department doctors. But the effect of that ministroke was life-changing. (More about that later.)
I’ll start at the beginning. In 2006, when I was in my 40s, I was diagnosed with type 2 diabetes, a chronic disorder in which my body is unable to properly use insulin, resulting in high blood glucose levels. Those elevated levels can lead to a number of serious health issues if they’re not managed properly—often a difficult task for those with the condition. Diabetes patients and their physicians have to find the right balance of medication, diet, and exercise to maintain good blood sugar levels without letting them get too high or too low, which can be just as dangerous.
Up until I had the ministroke in November 2021, my diabetes was, as doctors say, completely “uncontrolled.” I have had a lifelong love affair with sugar, and I ate as much ice cream, candy, and carbohydrates as I wanted, despite knowing that I was diabetic and how that behavior would affect my blood glucose levels.
After all, I felt fine. I had been blessed with good health for most of my life. In hindsight, I guess I was trying to prove to myself that diabetes was not going to change anything. Even worse than my diet was the fact that I didn’t take my medications regularly. I figured if I was eating so badly anyway, what was the point?
But as I’ve come to learn (and you’ll read below), diabetes can be an insidious disease. You can be without symptoms for years and feel completely fine. But once the complications of diabetes start to take hold—and eventually, they will—they can affect virtually every area of your health. That’s because excessive sugar in your blood is damaging to blood vessels and nerves throughout your body.
The three most common complications of diabetes involve damage to the nerves (neuropathy), the eyes (retinopathy), and the kidneys (nephropathy), according to Renata Belfort De Aguiar, MD, PhD, a Yale Medicine endocrinologist who treats patients with diabetes, as well as organ-transplanted patients who develop the condition.
As a result of my poor diabetes management, I ended up having all three of those complications.
From 'tingling' feet to eye injections
The first diabetes symptom I felt, which began around 2010, was a mild tingling, or “pins and needles” feeling in my feet. Over time, this gradually worsened and became numbness in portions of my feet, a condition known as peripheral neuropathy, which results from damage to the nerves located outside of the brain and spinal cord.
More than half of all people with diabetes will develop some type of neuropathy. Many experience sharp, stabbing pains in their feet. I’m fortunate that I’ve never had that; I've just experienced numbness and cold feet due to diabetes-related circulation problems. So, the neuropathy never really bothered me. I rationalized that I could easily live with a little numbness in my feet.
The really worrisome complications of diabetes started about six years ago. After a routine dilated eye exam, I was told I had the beginnings of diabetic retinopathy, and was advised to see a retina specialist as soon as possible. I’ve always been very squeamish about my eyes, so I put that off and retreated into my familiar world of denial. Then, one autumn evening about a year later, I was having dinner outdoors with a friend. She said, “Look at those stars—there’s the Big Dipper!” I looked up and all I saw was black sky. No stars.
That scared me. I finally went to a retina specialist, and sure enough, by that time I had fairly advanced retinopathy. Diabetic retinopathy occurs when too much sugar in the blood leads to blockages in the tiny blood vessels that nourish the retina, the light-sensitive tissue in the back of the eye. As a result, these vessels can start to leak fluid.
In some cases, they can close off completely, and the eye attempts to grow new blood vessels. But these new vessels don't develop properly and can leak or bleed easily, which can lead to a buildup of fluid (called edema) in the macula—the center portion of the retina. If left untreated, these macular edemas can cause permanent vision loss.
Sometimes, laser treatments are used to stop or slow this leakage in the eye. Another treatment involves injecting medications into the eye to help stop the growth of new blood vessels and decrease fluid buildup. I was told that injections would be the best option for me.
I am so sensitive about my eyes that I have never even worn contact lenses. Now, I was faced with the prospect of literally getting needles in my eyes. But thanks to topical anesthesia that numbs the eye and a very kind retina specialist, it wasn’t that bad.
I have been getting the injections for several years now, and it’s gotten easier over time. It’s amazing what you can get used to, especially when the alternative is potentially going blind.
Gastroparesis—another warning sign
In addition to developing neuropathy and eye problems, I was hospitalized twice within a six-month period in 2017 and 2018 for uncontrolled vomiting. I was throwing up relentlessly, every five or 10 minutes, even after I no longer had any food in my stomach.
While I never received a definitive diagnosis, the cause—according to my doctors—was most likely gastroparesis, a condition in which the stomach does not empty properly. Gastroparesis can occur when high blood sugar damages the enteric nervous system, which governs the functions of the gastrointestinal tract. Digestion slows down and food stays in your body longer than it should. Symptoms can include heartburn, nausea, vomiting, abdominal bloating, and feeling full quickly when eating.
The two times I was hospitalized for uncontrolled vomiting, I came in with blood sugar levels of around 500 mg/dl, which is extremely high. Desired blood sugar levels for diabetics are about 100 when fasting (first thing in the morning), and under 180 one to two hours after a meal.
The main way that clinicians monitor your long-term blood sugar control is through a hemoglobin A1C test, which measures your average blood sugar level over the past three months. When sugar enters the bloodstream, it attaches to hemoglobin, a protein in your red blood cells; the A1C test measures the percentage of your red blood cells that have sugar-coated hemoglobin. The higher your A1C, the higher your likelihood of developing complications from diabetes. For most diabetics, the goal is for your A1C to be under 7. For most of the time that I have had diabetes, my A1C level was in the 13-14 range and occasionally even higher, reflecting an average blood sugar level of about 325-350.
Each time I was hospitalized, doctors told me that I was playing with fire, and that such high A1C levels were extremely dangerous. I believed them, and I vowed to change. And I absolutely meant it. But then I would feel stressed, anxious, angry, or sad, and in that moment, Ben and Jerry’s New York Super Fudge Chunk ice cream was more important to me than the long-term consequences of diabetes.
“I need relief now,” I told myself, “and I still have plenty of time to get my act together and lower my A1C. This will be my last sugar binge, and tomorrow I will start taking care of myself.”
But hundreds of “last binges” were gradually destroying my health.
Peripheral neuropathy and amputation—a real possibility
Remember how I said that a little numbness in my feet didn’t bother me? Turns out I was wrong about that, too.
The danger of peripheral neuropathy is that you don’t feel pain in your feet, so you may have a foot injury or infection and not realize it. Damage to blood vessels caused by high blood sugar slows blood flow to the feet, increasing the odds that small injuries will become infected; it also slows wound healing.
In the summer of 2020, I was attending an annual family gathering in upstate New York, when I noticed a small cut on my toe. I washed it out, put some Neosporin on it, slapped on a Band-Aid, and forgot about it.
A few weeks later, a friend pointed out that my left foot was bleeding. I turned my foot over and discovered a very large, open wound on the underside of my big toe. It was clearly infected—the open part of the wound was a yellowish-green, and the toe itself was red and swollen. “That must really hurt,” my friend said. But I didn’t feel anything.
Even though I still did not fully grasp the gravity of the situation, I went to the local urgent care center. As soon as the doctor and nurse saw my infected toe, I could tell from the looks on their faces that this was serious. At one point, the doctor used a scalpel to cut away some of the dead skin around the wound, and he warned me that it would hurt. He seemed shocked when I didn’t even flinch—I couldn’t feel a thing.
I was treated with strong antibiotics and told to see a podiatrist as soon as possible, which I did. At the appointment, when the doctor examined my toe I said, jokingly, “It’s not like I’m going to have my toe amputated, right?”
I was shocked when she said, “Amputation is a real possibility. We’ll have to wait and see.” If the infection had spread to the bone, she explained, I would probably lose my toe. She took a series of X-rays, and, luckily, the infection had not spread to the bone.
But I was not out of the woods. She told me that if I did not significantly lower my blood sugar levels, the wound on my toe would never heal. And if it never healed, the toe would likely—eventually—have to be removed.
So, in addition to wearing a special boot and treating my foot as the podiatrist prescribed, I started to eat right, take my medications, and monitor my blood sugar regularly. And miraculously, my toe started to heal. It was the first time I had seen such a dramatic example of “cause and effect” when it came to blood sugar.
The good news is that my toe made a complete recovery. The bad news is that, once my toe was completely healed, I went back to my old ways of eating and not taking my medications regularly.
More diabetes ‘wake-up calls’
I have had many “rock-bottom” moments since I was first diagnosed with diabetes. But somehow, getting injections in my eyes and almost losing my big toe still weren’t enough to motivate me to make long-term changes.
More wake-up calls came in 2021 and early 2022. The first involved muscle loss. For a number of years, my legs were gradually becoming weaker. When I walked—especially up stairs or hills—my legs would burn, as if I had just had an intense workout. The problem was compounded by lower back pain.
By the summer of 2021, just walking to my mailbox was painful, and any walk longer than that became impossible. I’ve always loved walking along the country lanes near my summer cottage; now I couldn’t even walk to my neighbor’s house. Until I talked about it with my primary care doctor, it never occurred to me that the problem could have anything to do with my diabetes.
But it turns out there could be several diabetes-related causes, including a decline in skeletal muscle mass known as diabetic myopathy. Another possible cause could be peripheral artery disease, a circulatory problem in which narrowed arteries reduce blood flow to the legs. Making things worse was the fact that I was having balance problems and felt unsteady, which was a result of the neuropathy in my feet.
Then, last November, I had the ministroke. It was the combination of that and finding it so difficult to walk that finally scared me to my core. With the help of some “tough love” from family and friends, I finally realized that if I didn’t change my ways, I would be an invalid—or dead—within a very short time. So, I completely changed my diet, took my medications as directed, and started seeing a therapist to help me with my food issues.
But the biggest shock was still to come.
Kidney disease: the 'rock-bottom' moment
While I was in the hospital for my ministroke, I was given a diagnosis of acute kidney injury (AKI). I was referred to a nephrologist, but I felt sure this was a one-time incident caused by dehydration. My primary care doctor had mentioned in the past that I had elevated protein levels in my urine, but until my hospitalization it had never seemed like an urgent situation.
After conducting urine and blood tests, the nephrologist informed me that I had chronic kidney disease (CKD), a complication that occurs when high blood sugar damages the tiny blood vessels that act as filters in the kidneys. Over time, the kidneys lose their filtering ability.
Worse yet, I later found out that I had stage 4 kidney disease, with stage 5 being kidney failure. Once the kidneys fail, I would require either a kidney transplant or dialysis, a procedure to remove waste products and excess fluid from the blood when the kidneys can no longer perform those functions. Diabetes is the leading cause of kidney failure, according to Dr. Belfort De Aguiar.
I was stunned. Kidney damage cannot be reversed; all you can do is try to keep it from getting worse. In addition to controlling my blood sugar, I was prescribed a number of medications to lower my blood pressure and potassium levels, both of which contribute to the progression of kidney disease. I had to avoid high potassium foods like bananas, tomatoes, avocados, and oranges. My nephrologist said that she would work with me to try to avoid dialysis or at least put it off for as long as possible. But in most cases, stage 4 kidney disease eventually progresses to stage 5.
Perhaps the greatest blow came when my nephrologist referred me for an evaluation to see if I would be a suitable candidate for a kidney transplant. My walls of denial came crashing down, and I was overwhelmed by the seriousness of my situation.
“A kidney transplant? I’m not ready for that,” I told her.
She explained that it can take an average of seven years to get a donated kidney (from a deceased organ donor), so while I may never need a transplant, it’s best to start the process as soon as possible. During my evaluation, I learned that it’s actually preferable to get a kidney from a living donor, if possible, because they generally last longer.
So, I now find myself embarking on another journey, one that I never would have envisioned for myself: looking for a kidney donor.
Living well with diabetes
Looking back, I wish I had taken my diabetes seriously and taken control of my blood sugar a lot sooner.
But considering everything, I have been very lucky. I didn’t sustain permanent damage from my ministroke. I still have fairly good vision, thanks to those eye injections. I still have all my toes. My heart seems to be in good shape. And I am alive. For all of those things, I am extremely grateful.
But there is a price to be paid for my many years of poor diabetes management. I take a ridiculous number of medications, and most weeks I have multiple medical appointments. I am on a low-sugar, low-salt, and low-potassium diet. I still have trouble walking. I will probably be getting injections in my eyes for the rest of my life. And there’s a very good chance that I will require dialysis and/or a kidney transplant in the future.
In my most recent A1C test, I was down to 7.2—by far the lowest it’s ever been, and a huge improvement from the 13.6 A1C I had when I was in the hospital for my ministroke. When I have my next test, I’m hopeful my A1C will be below 7, the recommended level for people with diabetes.
I’ve only had about seven months of good blood sugar control after 15 years of poor diabetes management, but it’s a start.
So for now, I’m just taking things one day at a time, and taking some measure of comfort in knowing what it feels like to finally take care of myself.