Hidden Strength

Finding the Breath to Say Yes to Life

All I wanted was a chicken quesadilla from Chipotle with guacamole, sour cream, and salsa on the side, like an edible Mexican flag.

“Does Racine even have a Chipotle?” my dad asked doubtfully as my family and I settled into our hotel room. We had driven 14 hours from Maryland to Wisconsin to spend Thanksgiving with my dad’s relatives and arrived on Wednesday before the holiday. I was feeling particularly fatigued and assumed it was just a case of hunger and exhaustion after a long drive—so I was eager to get food in my stomach. After dropping our bags in the room, we went to my grandparents’ house to have pizza for dinner.

The answer to my dad’s question, by the way, is yes—there is a Chipotle near Racine. I Googled it to be sure. Although I didn’t regret the pizza, I never got to satisfy my quesadilla craving that week. I never even got to enjoy the highly anticipated Thanksgiving turkey dinner the next evening. Instead, I got an unexpected trip to the hospital, where I flirted with death.

 

My ordeal began in the late afternoon on Thanksgiving. The sun was setting as I lay in the hotel room, staring out the window. A flagpole waved the American flag, illuminated by fading gold. All I could think about as I took in the view was how much my abdomen hurt, and the stabbing, aching pains only seemed to worsen by the minute. But after spending most of the day lying in agony, I finally left the hotel room to return to my grandparents’ house for Thanksgiving dinner.

I sat at the long dining room table next to my uncle and tried to carry on conversation without keeling over in pain. My stomach (and everything else) hurt so intensely that there was no way I could finish even half a plate of food. With a small bite of mashed potatoes and an even smaller bite of turkey, my body had had it. It felt like World War III was about to erupt inside me. My stomach was pounding the “evacuation button,” signaling it wanted to abort the mission of digesting turkey and potatoes. My esophagus was screaming with furious acid reflux, my lungs were striving to remain calm in the face of chaos, and it felt like my intestines wanted to explode. Peacetime was over and things were about to get ugly.

My mom took me back to our hotel room and I went straight to bed, desperate to fall into sleep. But that night, I hardly slept at all, kept awake by viciously irritated organs that vied for my constant attention. My stomach seemed to want nothing to do with the contents inside of it, so it threw them up—what little was in there. Then I couldn’t stop throwing up. It didn’t take long before the vomit began to look black and watery, like flat Coca-Cola. I was vomiting blood.

Throwing up blood is a condition called hematemesis and is a result of internal bleeding. Stomach cancer, inflammation in the small intestine, and even aspirin can lead to internal bleeding, but in my case, the bleeding was caused by gastroparesis, or weak stomach muscles. Because of weak or damaged stomach muscles, food has trouble breaking down and moving into the small intestine. For me, this weakness included weakness of the esophageal sphincter, the opening where food enters the stomach. My esophageal sphincter was too weak to contract, causing severe acid reflux over a long period of time, corroding my esophagus and causing lesions that bled into my stomach.

Gastroparesis is caused by diseases that affect stomach muscles and the nerves controlling the muscles, but a specific cause isn’t always identifiable. The cause of my condition, however, was as clear as November’s sparkling icicles: spinal muscular atrophy (SMA), a degenerative neuromuscular disease. I was diagnosed with SMA—a form of muscular dystrophy—twenty-three years before I was diagnosed with gastroparesis. SMA affects my general muscle strength, causing major weakness throughout my body, including muscles within the gastrointestinal system.

 

After I spent a restless night vomiting blood, my parents took me to the emergency room early the next morning. By that time, the gnawing pain in my body had intensified, my breathing was heavily labored, and I was so weak that I could barely move. The doctors and nurses acted quickly to try to identify what was wrong, and before I was admitted to the intensive care unit (ICU), I was transferred to Dr. Reeja John, a cheerful woman who looked as beautiful as a TV doctor. Dr. John determined with surprising speed the reason for my breathing trouble: aspiration pneumonia. Because I have SMA, I don’t have the strongest lungs, so I use a breathing machine when I sleep to make sure I breathe steadily throughout the night. As my stomach was pushing curdled blood up my throat, the air flowing from the machine pushed the blood into my lungs, causing severe irritation.

I was fading fast. My body was spending all its energy on simply maintaining itself. According to Dr. John’s written report, dated November 24th, 2017, at 8:53am, it was already clear that I had acidosis and aspiration pneumonia, with severe dehydration and “coffee grounds,” a fun medical term for dark bloody vomit.

Acidosis is a condition in which there’s too much acid in the body. There are several types of acidosis, but mine was the metabolic type, meaning there was an overproduction of acid and a decrease of the chemical base bicarbonate in my blood. Gastroparesis, extreme acid reflux, and aspiration pneumonia all contributed to high levels of acid coursing through my veins, putting heavy strain on my frantically pumping heart.

“What is your code?” Dr. John calmly asked my parents as she walked with them to the ICU. My parents had never been asked this question before and didn’t know what it meant. Dr. John, with the gentle authority of a seasoned professional, explained that a code refers to how far someone is willing to go to try to save a life. Code status gives doctors guidelines for treatment when the patient is in dire condition and has a serious underlying medical disease with no cure, like SMA. How much strain is the patient willing to go through to relieve the acute symptoms? How invasive does the patient want the procedures to be? How much should medicine intervene? My mom told her that we had never had that conversation.

In Dr. John’s notes later that day, she wrote, “[Mother] states they have NEVER talked about code status and that they would at this point want everything done. I explained to them that she has a poor prognosis at this point, and that she is critically ill.”

 

Nurses came in and out of my room, taking X-rays and blood work, while I lay feebly in the hospital bed, my body on autopilot trying to push air in and out of my lungs. I was still producing black vomit and my heart rate reached an alarming 150-160 beats per minute (bpm). (The normal resting heart rate for an average female my age is about 74–78 bpm.)  A nurse asked me if I wanted a hot blanket, which I eagerly accepted even in my lethargic state. Warm hospital blankets are like dazzling, vibrant jewels on a tin foil crown—a luxury that does not seem to belong in a place so drab and grey. The contrast was a heartening relief that night.

My gastrointestinal physician, Dr. Mohammed Qadeer, came in and spoke to my parents about intubating me so he could perform an endoscopy. This would mean inserting a flexible tube with a tiny camera down my esophagus so he could look inside to examine what was going on and cauterize any wounds to alleviate bleeding. Plus, intubating me—putting me on a ventilator that would push air into my lungs—would allow my body to stop laboring so hard just to breathe. With easier oxygen regulation, my heart rate, acid levels, and bicarbonate levels would normalize faster. But my parents were extremely wary of intubation because patients with SMA have difficulty getting off breathing machines when their weak bodies become reliant upon them. Deeply concerned, my parents wondered if, at the young age of 24, I was nonetheless too old and weak to recover from intubation and breathe on my own again. It was a drastic decision, one they didn’t want to make on behalf. Dr. Qadeer, an easy-going man, respected my parents’ concern and suggested regrouping in the morning after we all got some sleep.

My dad went back to my grandparents’ house, expecting no more excitement for the evening. But 20 minutes after he left, just as my mom was pulling out the sofa chair beside my hospital bed to get some long-awaited rest, a young, dark-haired, clean-shaven, no-nonsense doctor came striding through the door. Dr. John Daniels stood next to my bedside and leaned in as he calmly said, “Magdalyn, we’re going to have to put a tube down your throat to help you breathe. Now, we don’t know how long it’ll be in there, but it’ll make you feel a lot better. Is that okay if we do that?”

I was in and out of consciousness all day and night and had no real sense of what was happening around me or to me. “Sure,” I said plainly, trusting that this MD knew what he was doing. But my mom quickly chimed in to tell Dr. Daniels to slow down and explain what he was talking about. Dr. Daniels clarified that my blood work and vitals indicated that I couldn’t wait until morning for a reassessment. My heart rate was skyrocketing and I had abnormally high blood gas levels. My blood tests showed too much carbon dioxide (CO2), which suggested my lungs were failing to adequately take in oxygen and eliminate CO2, due to my pneumonia and muscle weakness. Upon my mom’s resistance, Dr. Daniels agreed to wait to act until after my latest blood work came back. If it showed improvement, he wouldn’t urge intubation; if the lab results were not improving—as Dr. Daniels strongly suspected—he’d ask my mom to reconsider.

My dad came back to the hospital after my mom called him with this development, and after about an hour, Dr. Daniels once again emerged through my door. This time, he brought another physician and multiple nurses. They were ready to perform an intubation.

My lab results had not improved, but my parents still weren’t sure if restricting me to a breathing tube, potentially forever, was the next logical step. Understanding, maybe more than anyone in that room, the gravity of the situation, Dr. Daniels spoke with gentle firmness, “I don’t want to do anything you aren’t completely comfortable with; I want us all to be on the same page. But I will tell you this: Pretty soon, Magdalyn’s just gonna wear out. She’s going to be fatigued and her heart will stop in about two hours, and I would be saying this even if she didn’t have muscular dystrophy. I would rather do this now than have to do it in a time of crisis.”

It was then that my mom realized exactly where we were—the ICU, the last stop before the infirmed die. Throughout my life, I had been in and out of the ICU plenty of times with minor illnesses that only received close attention because I had SMA. Sometimes even a common cold would lead to a hospital visit. But this was no minor illness.

My mom leaned over my bed, touched my arm, and woke me with calm urgency. The room was dark, and I didn’t know why so many people were standing around me.

“Maggie,” my mom said, gripping my attention. “They want to put a tube down your throat and intubate you. There’s a chance that you won’t be able to come off the breathing tube. But they say if they don’t do it, your heart’s going to stop. What do you want to do? You have to make this decision right now, and we can’t make it for you.”

What was most distressing to me was not that I was dealing with a potentially life-altering decision that had a life-or-death component, but that I was clearly not in the right mental state to be trusted with this decision. The entire day was a blur and I still didn’t know what was going on. Why can’t you just choose for me? I thought at her, too tired and overwhelmed to know what to do. But it would’ve taken effort I couldn’t afford to spend to question my unyielding mother. Thinking as quickly as I could, I knew one thing: Life is valuable and I am valuable, with or without a permanent breathing machine.

“We have to try,” I decided. At that, everyone in the room shook hands and Dr. Daniels and his team got straight to work.

 

Dr. Daniels was right—I did feel a lot better. I was intubated for 30 hours, a long time for someone so weak. But my condition improved dramatically. It was clear that I was stable, and the morning finally came to take the breathing tube out. The nurse, Matt, began the process by slowly decreasing the amount of air blowing into my lungs, weaning me off the ventilator. When the ventilator was no longer providing support to my lungs and I was managing to breathe alone, but with the tube safely still in place, all my nurses gathered around me. I noticed Matt kept a bag valve mask near my bed. This way Matt could manually pump air into my lungs if I failed to draw air on my own after the tube was out. My team of nurses gave me a few final words of encouragement and told me to cough as hard as I could once Matt counted down from three and pulled the tube out.

“Ready? Here we go. Three… two… one. Cough!”

I was quickly given oxygen as everyone cheered, then watched me carefully. My breathing was strenuous, and for a few quick seconds, I was worried that I wasn’t sucking enough air into my sore airway. But I improved quickly. I was breathing on my own, without the comfort of a tube. I was back to my old self again.

Well, sort of. I spent the next few days in the hospital as my gastrointestinal organs continued to return to normal. My esophagus was recovering after three lesions were mended during the endoscopy that Dr. Qadeer finally got to perform after Dr. Daniels intubated me. As the lesions healed and my throat recovered from having a long tube pulled out of it, I was slowly reintroduced to swallowing liquids. I mostly remember being very hungry for much of that week. Soon, I could try soft foods, like ice cream. My heart sang. But it wouldn’t be until months later that I would master solid foods again.

As I rested and slowly recovered, I felt beautiful lying in that hospital bed. I hadn’t washed my hair, brushed my teeth with a real toothbrush, or taken a shower in many days, and I was physically weaker than I had ever been. But I felt strong—somehow, I was strong. More importantly, I was loved—I was overwhelmingly loved. I felt it from my parents, my family, my friends, and my God. I was blessed with more life, strength, and love than I deserved. That was tremendously beautiful to me.

What was not so beautiful was that the full recovery process took two months as I had to relearn how to swallow and regain the strength to feed myself, brush my teeth, and even speak fully. I was taking handfuls of pills a day, mostly to manage acid reflux and stomach irritation. To treat my pneumonia, I was ordered to take three capsules of antibiotic four times a day (that’s 12 pills a day for the folks at home) for several weeks. I was also prescribed Zofran, which is a drug used to prevent vomiting. I keep it near my bedside just in case I ever wake up in the middle of the night vomiting “coffee grounds” again. And I’ve also made a few lifestyle tweaks, like giving up caffeine, which relaxes stomach muscles—including my already loose esophageal sphincter—causing acid reflux to be more severe and more frequent. There’s no telling whether I will completely avoid another emergency, but I can take better care of my body and better recognize the warning signals.

During the months following my week-long hospital stay, I had a lot of time to think about the permanence of death and how close I was to it. I wasn’t afraid of death the night I chose to live, but I knew that if I could still live—even a life with heartbreaking and unfamiliar obstacles—it meant that I could still give. I could still love others and be loved by them. More life meant more opportunities to grow closer to God and for God to work through me to love others. As I recovered and replayed the fuzzy, limited memories from that night, thinking of myself as only two hours from being dead was striking. Recovery was a time of gratitude and joy for me and my family; how different that time would have been if I had chosen the simpler alternative or if Dr. Daniels never even emerged through my hospital door.

 

As I recovered throughout the following weeks and months, I thought about how thankful I was for all the big and small things in life—for my family, for Thanksgiving dinners (even when I’m not in attendance), for friends near and far, for cheesy Hallmark Christmas movies that kept me company as I recovered, for a handful of extra sunsets. But most of all, for every moment of love I’ve experienced in life.

Yes, life was the right decision. I would choose it again.

 

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