What the State of American Healthcare Means for the Medically Fragile

I turned 22 on August 31st, 2016. Since then, approximately one good thing has happened to me.

I “celebrated” my birthday in a hospital room, after being diagnosed the day before with superior mesenteric artery syndrome, a potentially deadly vascular disorder. The illness had caused my small intestine to block, almost completely, and had caused me to lose an immense amount of weight and to become dangerously dehydrated and malnourished. On August 31st, I was 64 pounds. On August 31st, doctors put a feeding tube into my stomach to try and ensure that there would be some level of nourishment getting into my body, to prepare me for the major surgery that I would be having one week later. On August 31st, I started taking incredibly strong IV narcotics to manage my intense pain.

By the time that I was one month into being 22, I had been sliced open from the bottom of my rib to the top of my hip. I was scarred, and sore. I couldn’t walk very far, or even shower on my own. My body was just learning how to eat again. I was still 64 pounds. I went through narcotic withdrawal, then again through withdrawal from sleeping aides that were given to me while I was in the hospital.

Slowly, little by little as time passed though, things seemed to be getting better. My pain was being managed, I was feeling more hopeful, I was gaining weight, and I had even been able to travel a little bit, to New York for Thanksgiving. My girlfriend of over three years and I decided to get married, and wed in an intimate courthouse ceremony in late January. Then, for Valentine’s weekend, we took a small honeymoon to Nashville, where we listened to live country music and sang karaoke for three days straight. I was beginning to feel that I belonged to this life again, and that this life again belonged to me.

two women wearing cowboy hats in front of nashville background

Slightly over six months into being 22, I wound up back in the hospital, this time with a 104.5 degree fever and a diagnosis of pneumonia. Somehow, again, I was fighting for my life, everything I had painstakingly tried to rebuild being torn down in front of my eyes. All I could do was watch.

Being in a hospital is an inherently disempowering situation, as is being in a school or a prison or any other institution, to varying degrees. Every aspect of your day and night is controlled by someone else, from where and when you sleep to what you eat and who you see and when you see them. Being in a hospital means trusting others – nurses, doctors, surgeons – with your life. And I’ve never really been great at that.

I give credit where credit is due; I’ve had some incredible doctors in my life and some even better nurses, who have taken care of me and dealt with my fearful questions and my wife’s probing intelligence and my father’s often inadvertent intimidation. But, at the same time, there are people who are less competent than others in all professions – and, in the healthcare profession, where everyone is consistently overtired, overstressed, and overworked, this slight variance of skill could cause a patient to die, very easily.

This almost happened to me.

I had been instructed by my attending physician to only take the IV painkiller he had ordered for me if I absolutely needed it – he had a mild concern about how it could affect my kidneys. However, he had ordered me to take an IV dosage of antibiotics every day, to fight the infection in my lungs that was causing the pneumonia which, he had stressed, was incredibly important for me to take consistently. Missing a dose could be catastrophic for anyone, he noted, but particularly for someone like me – because I was born with an immunodeficiency, average illnesses like the flu and pneumonia can kill me fairly easily. He knew this, and so did I. I assumed, wrongly, that everyone on my case would know this as well.

On the second full day in the hospital, this time around, I had been asleep when a nurse woke me up and asked me if I wanted this painkiller. Still groggy and half asleep, I answered, “No, please take it away. No more.”

The nurse walked away from my bed, and out the door. I heard my wife leap up from the chair where she had been working from her laptop and follow the nurse out into the hallway. I twisted my body to hear their conversation, and what I heard filled my heart with fear and resignation and sadness.

“It’s time for her antibiotic now.” That was my wife’s voice, quiet but steel-edged, the way she used to talk to the gigantic, perpetually beer-drinking baseball players who lived across the hall from us when she was my RA in college.

“She refused all treatment,” the nurse responded, “and we already put it in the system.”

I blinked, surprised. I had never said outright that I was refusing the antibiotics, or anything else that the doctors were ordering – I was merely trying to follow the doctor’s orders, and not take a drug that he had told me to take sparingly, if at all.

“Then take it out of the system, please,” my wife said, “Or change the system. She needs her medication.”

“We don’t have time for someone like her,” I heard the nurse say back, and my heart sank. “We have too many people here who actually want to get better.”

“She does want to get better,” my wife replied, panic creeping into her voice now as if she were pleading her case, or my case, as if I’d been guilty of a crime for which the only penalty was death, “She didn’t understand what you were asking her. Give her the antibiotics. If she doesn’t get them, she could die.”

In response, I heard the nurse bark out a laugh, as my heart broke into a million pieces. How was I supposed to entrust my health and my life to people who were so overworked that they were more willing to literally write someone off than to give them a dosage of antibiotics? How was I supposed to fight both my own body and everyone else, all of the people that were hurting me when they should have helped me?

I am not sure what my wife said to the nurse next, exactly. All that I know is that, a few moments later, the nurse acquiesced and gave me a dose of antibiotics so strong it burned my veins and filled my head with cotton and nausea. The next day, the “incident” had been reported to the head nurse on the floor, who may or may not do something to deal with what happened in the future. The thing is, though, that what happened to me is about more than me, as these things always tend to be.

This is the state of the current American healthcare system.

Our hospitals are overcrowded, and there are not nearly enough doctors or nurses to treat all of the sick people. On top of that, health care is expensive, so people may refuse certain treatment options, particularly if they don’t think that they will be covered under their insurance. These – combined with several other systemic, confusing issues within health care – can form a “perfect storm” of sorts, wherein patients, particularly at-risk patients like myself (the immune compromised, children, the elderly, etc.) may be at a greater risk of serious injury, illness or death when they are in the hospital than they would have been outside of it. Because of all of these factors, if someone were to enter the hospital alone, without a spouse, parent, or other family member along to serve as an advocate for them, these risks would be even greater.

My wife fought for me this week, convinced the nurses who had laughed in her face at the prospect of my potential death to bring me medication, and saved my life. She did all of that while working full-time from my hospital room, so she could continue making enough money to pay our internet and cable and grocery bills and to retain the health and vision and dental coverage for both of us that she receives through her employment.

She is a fighter, to be sure. And so am I. But, we should not have to fight this hard.

Our healthcare system is already a mess. In an article published on my wedding day, the Chicago Tribune estimated that repealing Obamacare would kill more than 43,000 per year; Republicans already tried to replace “Obamacare” (known more properly as the Affordable Care Act) with the so-called “American Health Care Act,” also colloquially called “TrumpCare” and “RyanCare.” BBC News reported that this new healthcare plan would have stripped insurance from 14 million people by the year 2018.

A population that has fewer people with health insurance could mean more people will be refusing treatment, or aspects of treatment, and then perhaps being written off completely for being uncooperative or worse, like what happened to me. The Affordable Care Act was not perfect – and, what happened to me, a middle class woman with damn good health coverage – while it was technically in effect proves that. But, I am scared to death that we are taking steps back instead of forward, steps that we – as a country, yes, but particularly we as people with disabilities, who are potentially very medically vulnerable or fragile – cannot afford to take.

I am halfway through my 22nd year of life, and I’ve almost died twice, in the same hospital, from two separate illnesses, in a six month period. That isn’t necessarily anyone’s fault – I chalk it up to a combination of bad luck and miscommunication, confusion and stress mixed with overwork. But, less than two months ago I promised to be with my wife in sickness and in health, and all I have given her so far is sickness. I vowed to be with her until death do us part, but I am not ready for death to come to me quite yet.

On my wedding day, the day I officially gave all of myself, my broken and stuck together parts and pieces and memories, to my wife, the Chicago Tribune reminded me, reminded all of us, that our healthcare system is in a crisis that is not about right versus left or red versus blue but about life versus death.

43,000 people each year would die without their health insurance that was previously covered by the Affordable Care Act.

I hope – no, I pray – that I am not one of them, because I have a sinking feeling now, as I write this from my hospital bed, that that is all that I can do anymore.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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