Think Like a Pancreas

ONE

Time for a Little Transparency

Nowadays, everyone is looking for transparency. Transparency in business dealings. Transparency in personal relationships. Transparency in tape. So it makes sense to begin the third edition of Think Like a Pancreas with some transparency of my own.

Why did I decide to write a third edition? No, it’s not for fame and fortune. One look at my meager checking account should be proof enough of that, and people aren’t exactly lining up to touch the hem of my retro garments. If you read my ramblings in a previous edition, you know I focus on three key elements for successful diabetes management: the Right Tools, the Right Skills, and the Right Attitude. The attitude part hasn’t changed, but the tools and requisite skill sets have evolved dramatically since the second edition came out back in 2010. New additions to our diabetes management war chest include continuous glucose monitors, hybrid closed-loop systems, an array of new types and concentrations of insulin, additional classes of noninsulin medications, smart pens, injection/infusion best practices, apps, software, and a greater understanding of all aspects of nutrition. And that doesn’t even touch on the explosion of social media and web-based resources that are now available within the diabetes community. So obviously, a new edition is needed. One cannot think like a pancreas using outdated tools and know-how.

Now let me get up on my soapbox.

Despite all the new gadgets, I still find diabetes to be a royal pain in the ass (pain in the bum for those of you in the European Union and Australia; pain in the tuchus for my Jewish friends). Even after working at it diligently year after year, I’m driven batty by the inconsistencies. Why, for instance, should the same bagel from the same bagel shop make glucose go very high one day but not the next?

Like you, I have enough to do without all the added responsibilities of taking care of my diabetes. Doctor’s appointments, getting lab work, and waiting on the phone to fight with my insurance company take time away that I’d much rather spend with my wife and kids or riding my bike down the Shore (this is a Philly term for “the beach in South Jersey”). Every meal and snack has to be preceded by a mathematical ritual. And I’d much rather spend my money on new running shoes or tickets to a ballgame than on steep copays for all my diabetes stuff. Face it: managing diabetes is like having another full-time job on top of everything else in our lives—but without weekends off and certainly without the paycheck.

You may have also found, as I have, that today’s health care systems simply aren’t equipped to manage diabetes properly. And that goes for more than just the American system. Virtually everyone I’ve worked with around the globe has had the same experience: most health care providers lack the time, expertise, and empathy to help us manage our diabetes properly. This is not from a lack of desire—most physicians are talented, motivated, caring people who wish they had the time and resources to do more for their patients. It’s just that the demands placed on today’s health care providers are so great that precious little time is available for staying on top of the latest developments and teaching us the finer points of diabetes self-management.

I hope you’re nodding your head by now, muttering, “Yeah, he gets it.” Well, here’s an updated synopsis of my life with diabetes thus far. See if anything else sounds familiar.

My Story

It was two o’clock in the afternoon on a typically hot, muggy summer day in Sugarland, Texas. (No, I’m not making this up. The irony is just unbelievable.) Home following my freshman year at college (Washington University in St. Louis), I had spent half the summer sucking down cold drinks and the other half peeing them out. My energy was gone, and there was no way the Houston summer could have caused me to lose so much weight—I had gone from 155 pounds to 117 (70 to 53 kilograms). I couldn’t tighten my belt enough to keep my pants from falling down. Then I saw an episode of M*A*S*H in which a helicopter pilot had diabetes. And guess what: he had many of the same symptoms I was experiencing! So I decided it was time to see the family doctor.

The doctor’s office was only a ten-minute drive from our family’s short-term home near Houston (we’re originally from the East Coast), so I was able to make it with just one pit stop to use a gas station restroom. That summer, I learned where all the best public restrooms were along the I-59 corridor in southwest Houston. When I got to the doctor’s office, I put on my glasses (miraculously, I could suddenly see road signs without my glasses for the first time ever as a result of changes in my vision), wiped off the steam created by the 101 percent humidity, and prepared for the worst.

After a quick physical exam, blood test, and urinalysis, the doctor came back in to the exam room and said nonchalantly, “Gary, I’ve got bad news, and I’ve got good news. The bad news is that you have diabetes, and you’re going to have it for the rest of your life.”

I have no idea what the good news was because I stopped listening at that point. The first syllable from “diabetes” stuck in my head. What the heck is diabetes? About all I knew was that it was making my body wither away and that it wasn’t going to go away. Ever.

I remember him telling me that my blood sugar was 600-something (over 30 millimoles per liter), and that this was six times the normal level. I also remember him saying that I would have to take shots and be very careful about what I ate. The thought of giving myself shots was one thing, but limit what I eat? Was he crazy? I was an active eighteen-year-old with the metabolism of a small country. The very thought of not being able to eat whatever I wanted whenever I wanted made me feel totally depressed.

So off I went to an endocrinologist at a fancy high-rise in downtown Houston. Keep in mind that the year was 1985, so getting in to see a specialist was as easy as making a phone call.

“You are lucky to be diagnosed now,” explained the endocrinologist. “We have come a long way in the treatment of diabetes. I’ll bet that in five or ten years, your diabetes will be cured.”

I should have taken that bet.

I then met with a nurse, a diabetes educator before they even had the term, who taught me the basics about diabetes. I discovered what insulin is and why it is important. I learned a little bit about how food and exercise affect blood sugar levels and what can happen if I don’t keep mine under control. I also found out why the high blood sugars turned me into a relentless peeing machine.

Finally, I was instructed on how to inject insulin. Forget about practicing on oranges, pillows, and teddy bears. I gave myself my very first injection right in the stomach. It hurt—probably because I had almost no fat left on my body and the syringe needles were much thicker and longer than they are today. But mostly it hurt because I was tense and overwhelmed at the thought of sticking needles in myself for the rest of my life.

I was also given a bottle of test strips and taught about blood sugar testing. No meter, mind you—just test strips. These strips featured a square box that had to be covered with blood, blotted, and then timed before matching the color on the strip to the chart printed on the bottle. Pale blue meant you were 40 milligrams per deciliter (mg/dl) (2.2 millimoles per liter [mmol/l]) to 70 (3.9)—a bit low; light blue, 70 (3.9) to 100 (5.6)—low normal; ocean blue, 100 (5.6) to 125 (6.9)—normal; aqua blue, 125 (6.9) to 150 (8.3)—slightly above normal; just plain aqua, 150 (8.3) to 200 (11.1)—slightly high; aqua green, 200 (11.1) to 250 (13.9)—high; sea green, 250 (13.9) to 350 (19.4)—very high; green, 350 (19.4) to 450 (25)—very, very high; brownish green—you don’t want to know. In other words, determining your blood sugar required an extremely sensitive eye for subtle differences in pastel shades. When I grew up, there were only eight crayons in my box of Crayolas, and none of them were “sea green.” So, this was a little bit challenging.

The bottle of test strips came with a medieval torture device called an “Autolet.” The Autolet had a small disposable platform with a hole where you placed the victim—I mean, your finger. A disposable 25-gauge lancet was placed in the firing mechanism, which swung around at a high speed like a pendulum to stab your finger and make it bleed. The lancet didn’t retract out of your finger the way it does with today’s devices; it stayed in until you pulled your finger away. I called it the “Guillotine.”

Then I met with a dietitian—a tiny, middle-aged woman who taught me the fine art of the “exchange” diet.

“You really don’t have to change what you eat that much,” she told me. “You just have to be careful not to eat too many concentrated sweets, fats, or very large portions of anything.”

Apparently, she had no idea whom she was talking to.

I can still remember my “generous” twenty-five-hundred-calorie exchange diet—chock-full of fruits, vegetables, meats, milks, fats, and starches. Oh, how I hated that diet. There’s nothing like telling someone they can’t have something to make them crave it more than ever. I was hungry constantly. The exchange system meant that everything I ate had to be placed in a category and that I could only eat so many things from each category at each meal and snack. Talk about sucking all the fun out of eating!

My first exchange diet meal looked so puny on the plate—a sandwich, a piece of fruit, a cup of milk, and a handful of chips. And there were no seconds, thirds, or fourths like I was used to. I felt hungry all the time.

The first couple of weeks were tough. Even after starving myself and doing everything I was asked to do, the stupid test strips kept turning aqua blue instead of sea green (or maybe it was the other way around). I cried a lot those first couple of weeks. My mom told me that my dad, normally an unemotional guy (a chemical engineer by trade), had cried too and that he wished it was he and not I who got diabetes.

A few weeks after my diagnosis I purchased my first blood glucose meter—a Glucometer, to be exact. It weighed about a pound and was the size of a brick. The testing procedure is still etched in my brain: Guillotine, then squeeze out a big “hanging” drop of blood, dab the big box on the strip, start the counter, wait one minute, blot the strip, insert it in the meter, press the button again, and wait ninety seconds for that 58 (3.2) or 314 (17.4) to appear on the screen. (Just once, wouldn’t you like to see a meter advertisement in which the reading on the screen wasn’t so damn perfect?)

That meter lasted about a year. Then Lifescan came out with its first One Touch meter, and I jumped to get one. Imagine—no blotting, a round test area (covering a square box with a round drop of blood is not easy!), and only forty-five seconds from fingerstick to out-of-range number. The new meter didn’t do much for my control, but I did have an extra five minutes a day to spend doing things other than obtaining blood sugar values.

My early insulin program also presented a challenge: NPH and regular, at breakfast and dinner. NPH was the long-acting insulin in vogue at that time; regular was the stuff used to cover meals. The regular insulin would peak in about two hours and last about six; the NPH would peak in six hours and last about twelve, although every day it seemed to have a mind of its own. Everyone at the endocrinologist’s office kept telling me the same thing: “You can live a normal life as long as you take your insulin.” But that meant that I would have to eat certain things at certain times of day, exercise (with caution) at certain times of day, sleep only at certain times because of the need to take shots at specific times, and test my blood sugar at certain times. What could be more normal than that?

Back in 1985, two shots a day was the norm. So was making your life conform to your insulin program. But things did improve over time. I was given a sliding scale for adjusting my regular insulin, which was a good thing because I started to sneak lots of extra “exchanges” into my meals and snacks. With all the exercise I did, I probably had as many lows as I had highs, so my glycosylated hemoglobin (precursor to the A1c) looked pretty decent. However, the low blood sugars were becoming more frequent and more severe, especially during the night.

When I returned to college in the fall, my new endocrinologist in St. Louis suggested that I move my dinnertime NPH to bedtime. Although that helped cut down on the nighttime lows, I started having more lows before lunch. Oy vey.

My One Touch meter got a lot of use through college. Before dinner my friends would gather to wager on my blood sugar level. Everyone threw a dollar on the table, with the closest guess taking the loot. Some of them became pretty adept at the whole diabetes thing: They would ask questions like, “What did you eat for lunch?” and “Did you work out this afternoon?” Talk about getting by with a little help from my friends! Stuff like that kept me from getting down about my diabetes.

Frequent high and low blood sugars plagued me throughout college. Anyone with diabetes knows how those blood sugar swings make you feel: fatigued and frustrated. In addition to the support of my friends, exercise was a key to helping me keep my balance. I had always been into sports, but after being diagnosed with diabetes my passion for staying in shape soared to a whole new level. Every day I managed to find time for some form of exercise. If no one was available to play basketball or racquetball, I would go to the gym to lift weights, ride my bike around the park, or jump rope in the dormitory lounge to the beat of Motown music. Exercising made me feel strong, fit, and in control of my own health despite having diabetes.

Unfortunately, low blood sugar often followed the emotional high I got from exercise. A month after starting my first post-college job, I showed up for work in a complete daze. Some days I couldn’t even remember getting dressed or driving to work. It was a miracle that I never crashed, buck naked, into a tree. To make matters worse, I was no longer experiencing symptoms letting me know that a low blood sugar was coming. Gone were the good old days of shakes and cold sweats. Now mental confusion was the first noticeable sign that my blood sugar was dropping, and sometimes it was too late for me to handle it on my own.

Thank God for my wife, Debbie, whom I met at college. She’s very good at knowing when to step in and when to let me do my own thing. I knew I would marry her after our first Valentine’s Day together. She learned a few things about diabetes and went out of her way to prepare a huge heart-shaped box filled with popcorn and pistachios. You know what they say: the way to a man’s heart is through his pancreas.

Debbie and I left St. Louis and moved to Chicago after we both graduated. While in Chicago I met with a few more endocrinologists and other specialists for my diabetes. By that time, I was growing more and more frustrated with the constant swings between highs and lows. Nobody had any answers—just the same old rhetoric: “This is what your insulin is doing. You just need to adjust to it.”

Then I had the most severe low blood sugar of my life. It came in the middle of the night after playing basketball earlier in the evening. Debbie told me that I was pale and completely unresponsive, and my limbs were jerking uncontrollably. She called for paramedics, and according to the reports, I fought them off pretty well while they were trying to put an IV into my arm. When I finally regained consciousness, Debbie was standing next to me with an exhausted, worried look on her face. I looked to the side and saw tubes coming out of my arm. I also saw blood. My blood. On the pillow, on the sheets, on the floor—everywhere. That experience really shook me up.

Then I met an exercise physiologist who worked part-time as a consultant at a nearby diabetes clinic. He had diabetes himself and gave me some suggestions about eating extra food at bedtime and self-adjusting my long-acting insulin to prevent the nighttime lows after exercise. Why had nobody ever taught me these types of tricks? That exercise physiologist opened my eyes to more than just how to adjust my insulin doses. He set me on an entirely new career path. I liked his approach so much that I decided to become an exercise physiologist myself and focus on helping others with diabetes. So what if there were no full-time jobs for exercise physiologists at diabetes centers? I loved to exercise. I had diabetes. And I was on a mission to help others who were as frustrated as I was. So I went back to school, earned my master’s degree in exercise physiology, and landed a gig with the Joslin Diabetes Center in Philadelphia.

Being a New York/New Jersey native, I felt Philadelphia seemed close enough to home—and it had its own NBA, NFL, and MLB franchises (I don’t think I could live in a city that didn’t have those). So we packed up the car and moved to Philly, where I became the Joslin Center’s full-time exercise guru. I have to admit: my office was pretty cool. It had weights, treadmills, bikes, video equipment, and a great view of the sports complex in south Philly. The only thing better than my office was the clinical team that worked around me. The doctors, nurses, dietitians, and psychologists were heavily into the concept of flexible insulin dosing and self-adjustment. I cross-trained with them at every opportunity and absorbed as much as I could about the many facets and nuances of diabetes care.

Perhaps the greatest breakthrough in my own self-care was my decision in 1994 to try an insulin pump. Nobody at our diabetes center had used one, but our patients expressed a mounting interest in pumps. So I was the designated guinea pig.

I’ll never forget how nervous I was the day I was trained on how to use that little gray box. There were about twenty doctors and nurses watching my every move. My first infusion set, the apparatus that delivered the insulin from the pump into my body, was a steel needle (the needle stayed in all the time). Soon, a flexible plastic infusion set became available, followed by a set that could be disconnected and reconnected easily. Before that, you had to stay connected to the pump all the time—during showers, sports, sex, and so on.

The pump was very simple compared to today’s models. Nevertheless, just having the ability to adjust basal insulin levels and fine-tune mealtime doses really helped to stabilize my blood sugar levels. For the first time in almost ten years I could sleep past 8 a.m. without having my blood sugar skyrocket. I could delay my lunch without crashing. And best of all, I could work out to my heart’s content without going low in the middle of the night. In fact, I haven’t had a single severe low blood sugar episode since starting on the pump twenty-five years ago.