Nerve

By Laura Buchman

"We are in a paradigm shift where patients need the help of the healthcare system, yet at the same time have to protect themselves from it." 

NERVE: Surviving Medical Madness 

• Language: English
• Publisher: Manuscripts LLD
• Release date: Feb 2, 2024
• ISBN: 9798885046893

Book preview

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NERVE

NERVE

Surviving Medical Madness

Laura Buchman

Copyright © 2023 Laura Buchman

All rights reserved.

NERVE

Surviving Medical Madness

ISBN

979-8-88504-573-5 Paperback

979-8-88504-689-3 Ebook

To my beautiful mom who shined so bright. To my children who bring such joy.

Contents

Author’s Note

Part one

Chapter 1.

The Tornado

Chapter 2.

Trapped

Chapter 3.

GBS

Chapter 4.

The Nudge

Chapter 5.

The Abyss

Part two

Chapter 6.

The Big Apple

Chapter 7.

Dave

Chapter 8.

Not All That Glitters Is Gold

Chapter 9.

Cathing Queens

Chapter 10.

Commercialized Care

Chapter 11.

Common Sense

Chapter 12.

Digging In

Chapter 13.

Ascension

Chapter 14.

Nirvana

Part three

Chapter 15.

Uncertain

Chapter 16.

Scooby Doo

Chapter 17.

The Pollock

Chapter 18.

Hit and Run

Chapter 19.

Moving On

Acknowledgments

Appendix

The intention of this book is not to provide medical or health advice. The information and advice do not replace that of trained medical and health professionals. The story I tell is from my recollection and research. I have changed the names and places in the story to protect the privacy of individuals.

Author’s Note

Do as much as possible for the patient and as little as possible to the patient.

—Dr. Bernard Lown

It took less than twenty-four hours in the hospital for my son’s world to come crashing down. Adverse reactions to treatments and tests administered by his care providers led to paralysis from the neck down, a tracheotomy, a gastrostomy tube, and life-threatening hospital infections.

A Juilliard percussionist and just nineteen at the time, my son Pete had no health issues before he went to the hospital for help. He was healthy and strong enough to perform in his high school drumline upside down, hanging by his legs off his friend’s shoulders and tirelessly banging on a drum.

When I began writing NERVE, the intent was to inspire others faced with health challenges never to give up. Deter­mined to get back to the life and music he loved, my son pulled himself through the darkest of times. While I’m dedicated to telling this story about hope and my son’s strength, I am also telling a story about medical error: patients who go to the hospital and then suffer iatrogenic illness or injury, meaning they are made ill by medical treatments or examinations themselves.

When Pete first went to the hospital that fateful day, we believed he was in good hands. It gradually became apparent they were making some questionable decisions. Incredibly, medical errors are a leading cause of death in the United States (Rodziewicz 2022). Around 400,000 hospitalized patients a year experience some type of preventable harm, over one thousand patients a day (James 2013). A 2018 study of data from eleven Harvard Medical School-affiliated Massachusetts hospitals found that adverse events affect about one in four patients and, in some cases, result in death (Winawer 2023).

Although certain aspects of Pete’s care and diagnoses did not make complete sense at the time, we trusted the doctors and took them at their word. New symptoms were often the cause of adding on additional medications, with the possibility that the previously administered medications had actually caused these new symptoms usually ignored. This despite that experts like Adriane Fugh-Berman, professor of pharmacology and physiology at the Georgetown University School of Medicine, advocate teaching medical students, If a patient develops a symptom after they’ve gone on their drug, it’s always the drug’s fault until proven otherwise.

Looking back it’s ironic, but when you are in a state of shock, it is difficult to process and think clearly. We were desperate for help. Despite the trust the public places in physicians to uphold their oath to do no harm, Dr. Robert Pearl wrote in his 2021 book Uncaring that there are in fact many situations when physicians themselves cause harm to patients, be it financial, physical, or psychological. These situations are not the result of external forces or systemic constraints. They are directly within the doctor’s control.

It took me a long time to process that the hospital my son went to did not help him, but instead, it put in motion everything he went through. His situation resulted from shoddy decision-making. This trapped him in a hospital bed until he couldn’t function, speak, or fend for himself. He was dangerously at the mercy of the hospital.

My intent is not to speak ill of doctors. My son received remarkable and compassionate care from many doctors, but he is also a survivor of a modern medical system that is financially rewarded for overtreating and overmedicating to the detriment of the patient. This creates a fog of treatment, making it challenging to figure out what medications are necessary and what went wrong. Doctors deserve our respect and appreciation for their rigorous training and desire to do no harm, but that shouldn’t excuse the behavior of doctors who do cause harm.

In 2017, surveyed doctors from the American Medical Association reported that nearly a quarter of all the tests were unnecessary, as well as 20 percent of prescriptions (Lyu 2017). Until patients receive only the necessary care, the system will be taking liberties with our health instead of prioritizing patient safety. We must learn how to advocate and protect ourselves and our loved ones in the current environment. As patients and family members, we have no choice but to take on the responsibility of knowing the contraindications, side effects, and the risks and downsides of surgeries and procedures. We must assess whether these truly make sense. It is a big task, but we have no choice.

Even if you are healthy and can’t imagine finding yourself in the hospital, it is important to understand the risks and prepare. I wrote this book hoping to help readers avoid some of the pitfalls we experienced and gain insight into how to advocate for themselves and their loved ones.

My hope, too, is to shed some light on the predicament of teenagers and young adults treated as adults in the healthcare system even though they are physiologically quite different from the typically older patients hospitals most often treat. This could lead to inappropriate or harmful care because, for example, young people have stronger immune systems and metabolize medicines more quickly than older adults (Le 2020).

In writing this book, it was also very important to support survivors crushed by a class of antibiotics called fluoroquinolones. Many of these victims who have had their lives hijacked were formerly healthy, athletic, and vibrant people of all ages who simply listened to their doctors and now have chronic, sometimes irreversible damage and sickness.

The decisions medical professionals make have life-and-death consequences. We put our lives in their hands. It is commonplace for nurses to hook up patients to IVs without permission and without full disclosure of the possibility of life-altering side effects. In return for the trust patients place in doctors, patients should receive empathy, compassion, respect, and full disclosure about everything involving their treatment. After my son’s experience, I pray I won’t end up under the wrong doctor’s care, uncommunicative, and trapped in a hospital bed without an advocate, moral support, or the ability to refuse medication or treatment. I hope to see a day when the commercialization of medicine takes a backseat to patient-centered care so that doctors can practice in the way they intended when they went to medical school.

Nevertheless, this book is as much about what went right as what went wrong. Pete’s strength ultimately saved him, but so many people stepped up to support him and keep his spirits up, which were fundamental to his recovery. This includes family and friends, doctors and nurses, nurse aides, physical therapists, occupational therapists, speech therapists, energy workers, music teachers and professors, spiritual healers, social workers, mental health specialists, personal trainers, and Guillain-Barré syndrome (GBS) and fluoroquinolone survivors. Their passion and kindness kept the wind at his back.

And I would be remiss not to mention that this book is also for caretakers who drop everything to be with their loved ones. Though they can never truly understand what a patient is going through, when loved ones are injured, everyone around them is too. Lives become broken and disrupted. Caretakers toughen up and navigate the ups and downs with limitless love, perseverance, and hope.

Part one

Chapter 1

The Tornado

There are moments which mark your life. Moments when you realize nothing will ever be the same and time is divided into two parts, before this and after this.

—N. Kazan

It was a peaceful, uneventful drive—until it wasn’t. My husband and I flipped to the local news radio station and heard them discussing an extreme weather event just as we looked straight ahead through the windshield at the whirling and tight twisting top in the sky. Is that a tornado? we asked in unison.

Although it seemed hundreds of feet away, within seconds, we started to feel the debris hitting our car. The car seemed to be lifting off the ground, and we had no control. Were we going to hit the railing or another car? Or would the wind and rocks hitting the car break the windshield? My husband was at the wheel and did his best to control the car. I knew things were now out of our hands.

This was the same unsettled feeling I had after visiting my son in the hospital for the first time. He had done nothing to put his health at risk. In fact, he had done just the opposite. He sought medical care, and now, nothing seemed to be under control.

The day I arrived at the hospital, I was eager to see Pete and find out what was keeping him from checking out. He had now spent two nights in the hospital. I had imagined he might be sleeping as they told us how sleepy he had been. Or maybe he was texting on his phone, letting his friends know he was fine and would be heading back to New York City soon. I understood Pete would likely