Diabetes Is Not A Guessing Game

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I grew up around needles, meters, insulin, test strips and blood. I grew up to know the moodiness, the fatigue, the weight loss and weight gain, the bags beneath my eyes, the uncontrollable need to urinate, and the constant emotional reactions to whatever my glucose levels were. I grew up around questions and comments such as, “You look tired” or “Are you feeling okay?” or “Wow, you’ve lost a lot of weight!” or “Are you on drugs?” That last one is my favorite, especially because of the look on people’s faces when they hear me say, “Yes, Humalog and Novolog.”

My father was diagnosed with type 1 diabetes at age 21 during a mandatory drug test for his job as a foreman at a paving corporation. His drug test was clear, but his body was spilling sugar into his urine, which means diabetes. At age 15, my older brother, Trevor, was diagnosed after his constant need to urinate, to the point where he wet his pants. Six years after that, when I was 17, I was given the same diagnosis. Gaunt and pale, people told me I looked like a drug addict.

My brother and father’s diagnoses were quick: they were immediately reliant on insulin, there was no diabetes honeymoon. For me it was slow. At first I had trouble with my vision, then I had mood swings. From there it went downhill: Thirst, constant urination, fatigue, weight loss, and huge, puffy bags under my eyes. I knew how serious this disease was and I had hoped it wouldn’t afflict me. I’d seen my dad hospitalized for diabetic ketoacidosis (DKA), what happens when there is not enough insulin in the body, but both times he came through it. The fear of that pushed my parents to work above and beyond to monitor our blood sugar so we could avoid such close calls. Unfortunately, my parents could not protect my brother from what happened last October.

At the time, Trevor wasn’t living with us. He’d been living where he’d found work, exactly two hours and 14 minutes by car from our home. Even though I didn’t see my brother every day, when he’d come home on weekends I could tell that he wasn’t taking care of himself.

He was working long hours and said he was tired all of the time. And he ate most of his meals out, and then snacked on unhealthy snacks like chips and Slim Jims. He spent most nights with his buddies in the bar. He admitted he’d stopped testing his blood sugar regularly. He just guessed how many carbs he ate and guessed how much insulin he should take. What he didn’t guess was that he was basically killing himself.

On a Wednesday, my brother got up and went to work like any other day. He ate his lunch; he didn’t test and, sticking to his new routine, just guessed at how much insulin to take. Then something different happened: his insulin pump made a noise he’d never heard. It stopped him, but then he, again, guessed everything was fine. On his way home from work he stopped at the grocery store and, when he got home, put the grocery bags on the counter. He suddenly felt nauseated. He walked to the bathroom. He looked in the mirror and saw how pale his face was. From that moment, he says, everything went black. He remembers nothing that followed.

No one had any idea that something was wrong with Trevor. The next morning, on Thursday, his boss called him and my brother woke up and answered the phone. His boss, we later learned, had told him that work had been cancelled that day and the next because of rain. My brother replied with an “Okay,” hung up the phone and went back to sleep.

The next day, a Friday, my father called my brother at six in the morning to check in about work and because he was curious about how much it had rained. Again, my brother answered the phone and talked to my dad. My brother, according to my dad, said work had been called off and he wasn’t feeling well so he was going to get some sleep. He told my father he’d head home at noon, since he usually spent the weekend with us. My brother hung up the phone and went back to sleep.

About four o’clock my parents got home from work. My brother hadn’t come home, so my dad called him. There was no answer. He thought that maybe he was hunting; it was deer season, a big deal where I come from. An hour passed, still no sign of my brother. My parents started to worry. They had a bad feeling so they called the police, gave them my brother’s address and begged for them to check on him.

When the police arrived at Trevor’s apartment, he woke up and answered the door. The police asked him if he was okay. We later learned that he’d said, “Yes, I just can’t seem to shake this stomach bug.” They told him to call my father and they left.

My brother dutifully called my father and told him he wasn’t feeling well, but he was now heading home. On the phone, according to my dad, he sounded completely normal.

By seven my brother had not come home. My dad again called him, but this time he didn’t answer. Something was wrong. My father and his best friend jumped in the car and drove those two hours and fourteen minutes not knowing what they would find.

At my brother’s door, my dad took a deep breath then went in. He saw my brother on the couch. His lips were blue and he gasped for air. While they waited for the ambulance, my father tried to take his glucose level. Each reading just read “High.”

When the ambulance arrived, my father filled them in on his condition and they rushed him to the hospital. The same police officer that had visited my brother earlier had accompanied the first responders. He said that if he had known Trevor was a person with type 1 diabetes he would have paid closer attention to his behavior.

Meanwhile, my mother was back at home, trying frantically to call my father to find out what had happened. My dad ignored her calls because he was afraid he’d have to tell his wife that their son was dead.

At the hospital, as the doctors were working to save Trevor’s life, my father made that dreaded call to my mother. He told my mom to get someone to drive her to the hospital. I was several hours away from home that day playing in a soccer tournament. My parents chose to wait to tell anyone else about Trevor’s condition until they knew more.

My brother was in a diabetic coma. His blood glucose level was in the thousands because he hadn’t taken enough insulin, and  his pump hadn’t been working. He’d also suffered a minor heart attack. The doctors told my parents that they needed to prepare to say goodbye to Trevor.

I played better than usual in my soccer game—it was an amazing match. My glucose levels were perfect. I called my parents to tell them about it. At the end of our conversation, my dad said that my brother had a stomach virus and that he had to be hospitalized to keep his diabetes under control. I wasn’t worried. Yet.

A little later, as I loaded the bus to head home, I looked at my phone—there were some messages. One, from a family friend, said, “So sorry to hear about your brother. If you need anything let me know.” Another said, “So sorry for your loss.” I panicked. I called my parents and my mom said, “Sweetie, something bad has happened to your brother. Daddy found him in a coma, the doctors are doing everything they can but we need you to come to the hospital.”

It would be hours before I could get to the hospital so I asked my dad to put the phone next to brother’s ear. I said, “Hey, Trev, I love you.” That night I prayed, I cried, I felt helpless.

All night my parents took turns sitting with my brother. He was still unconscious, but they wanted to be with him when he woke up, or if he didn’t. Around four in the morning on Sunday my mom was sitting with Trevor when he woke up and said, “I’m sorry, Mom. I am so sorry.” My mom, in shock, said, “Its okay, bud. Just be ready to watch some football with your parents all day.” He looked at my mom in confusion and said, “It’s Wednesday, football’s on Sundays.” Trevor had no recollection of what had happened from that moment he’d set down the groceries and looked at himself in the mirror. He had lost Thursday, Friday and Saturday, and he’d come close to losing his life.

My brother’s recovery was long. He lost feeling in his right arm and hand because of the heart attack and all the fluid that the doctors had pumped into his body to save him.

I’ve learned the importance of testing every morning, before every meal, and before bed. I’ve also learned that type 1 diabetes isn’t about guessing. You have to know your blood sugar, what you’re eating, and how much insulin to give yourself. You have to take care of yourself. Trevor got lucky, we all did.

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