I was in intensive care for weeks, close to death, and asking my doctors to do that one thing may have saved my life.

The author in the intensive care unit visiting her daughter.

What’s your name? ^ “Taylor Coffman, this is a story about the power of power.”

Do you know where you are? The hospital.

What is the date? February 17, 2022.

Who is the president? Biden.

What is the capital of Canada? Uh-oh. Ottawa? Do Americans usually know that?

I tried to answer my new internist, but the answers wouldn’t come out of me. Each answer caused a stutter as big as the Mariana Trench – and it scared me.

Plus, I was twitching so hard that my arms were practically useless.

I had been in the hospital for a month. Zach, my husband, was at home in our apartment, taking care of my newborn baby with my mother. It was not easy for her: small apartment, new baby, one bathroom, my life hanging by a thread.

I was in and out of intensive care for the last few weeks. Zach had even had “the talk” – a doctor had called him in the middle of the night and told him that I might not make it home. Many thought I probably wouldn’t survive. They didn’t know exactly what was wrong with me, except that everything something went wrong for me.

Four weeks earlier, I had given birth to my baby by Caesarean section. Moments later, I had to undergo another operation because my vital functions dropped rapidly and I was bleeding heavily.

I couldn’t even hold my baby in my arms. There was no skin-to-skin contact – just chaos, panic, and then I didn’t wake up from the anesthesia. It was a real nightmare. Eventually I woke up, and four days after the birth I finally met my daughter before she went home – without me.

After my baby was born, I endured three intubations in the NICU, multiple abdominal surgeries, a body full of blood clots, heart and kidney failure with a dash of severe sepsis and pneumonia, and a long list of other scary conditions I never want to google. I was a forever changed, half-dead person.

After I was taken off the ventilator for the last time – and was able to speak again – a rotating group of doctors visited me every day and told me different things about my condition. It felt like an absurd play. I was basically having the same conversation over and over again in a vicious cycle of frustration and a maze of unclear next steps.

My case was particularly difficult because so many body systems were failing and I needed a whole range of doctors to manage it. I had a fetal maternity medicine team, residents, an internist, a cardiologist, a hematologist, a nephrologist, an infectious disease specialist, a pulmonologist, a surgical team, and maybe a few others I’ve forgotten.

“My day job is as a project manager and you all have to organize yourselves across departments,” I complained to one of my many doctors. “Everyone tells me something different.”

In response to my intervention, my doctors eventually set up a text chain so they could all communicate centrally.

It’s possible that the text chain saved my life – and it might never have happened if I hadn’t said anything.

“This is a moment from my nine months of dialysis in 2022,” the author writes.

I realized that if I wanted to survive, I had to take control of my recovery. I had the power. I could assert myself. My doctors cared deeply about my survival, so I decided it was time to ask them for what I needed instead of passively riding the tidal wave of medical agony. My skin was gray and my kidneys weren’t working, but I wasn’t weak – at least not where it counted most. I had my mind and my voice back, so I had to use them.

I was still many tests away from an official diagnosis, but my clever hematologist had a theory that I had a particularly bad disease called atypical hemolytic uremic syndrome (aHUS). It’s extremely rare and many people die from it. The disease mostly affects women because it often hides in the body until a trigger – like pregnancy – triggers it.

After a few stable days, I began to feel increasingly severe tremors and stuttering in my body. I tried to manage the project by telling my doctors about my new symptoms. “This is not Me”, I said. “Something else is really wrong.”

My new internist told me it could be a side effect of my medication. Other doctors said I was stressed and recommended I take clonazepam to help with my anxiety.

Suddenly, a few hours later, everything in my perception mysteriously started repeating itself three times in a row, as if I was caught in a horrible déjà vu loop, and then I couldn’t speak anymore.

It turned out that my body was poisoning my brain with toxins because my kidneys were failing. I desperately needed dialysis, but there was no equipment in this huge, state-of-the-art hospital… and my nightmare lasted longer than planned.

I was beyond angry and frustrated. Despite constantly updating my many doctors about my symptoms, I was now at the point of toxic encephalopathy and suffering from aphasia and nervous tremors with déjà vu.

Why was I rejected when I addressed the warning signs I was seeing?

The data does not reflect well on the system. A 2009 study showed that middle-aged women with the same symptoms of heart disease as men were twice as likely to be diagnosed with mental illness. The Journal of the American Heart Association found that women who may be suffering a heart attack wait 29 percent longer in the emergency room than men.

The CDC recently reported that one in five women experience abuse during pregnancy. The statistics are even worse for black women, leading to a higher maternal mortality rate.

I know doctors often struggle in a broken system. I understand their challenges and their exhaustion. But it should be up to the medical industry and educational institutions – not patients – to make progress to overcome these pressures.

I am also not say that we should always distrust our doctors. I believe in science and I believe in their training and expertise. But after everything I’ve experienced, I now know that there are ways patients can better support our doctors, and I know that collaborating with them and taking an active role in our care is not only vital – it can mean the difference between life and death.

Now I approach healthcare differently.

The author on vacation with her husband and daughter.

While doctors certainly have knowledge and training that I don’t, I am an expert in my own right. We work together and really listen to each other to make the best decisions to treat my condition. I ask them to communicate clearly so I understand exactly what is happening, and I keep voicing my concerns until I’m confident they understand what I’m going through.

When I know something is wrong but I’m not sure what, I become a researcher. I make a bullet point list of how I’m feeling in the notes app on my phone and bring it with me to my appointment.

I also do my homework. Although many doctors say they hate it when patients search for information on the Internet – and Googling symptoms can cause problems — a new Study shows It may not be as harmful as once thoughtand there are many great digital resources available.

If I want a test or procedure that a doctor does not think is necessary, I ask him to note my request in the notes. Written records carry weight. I I also often ask healthcare professionals if it’s okay to record the appointment using my phone’s voice recorder.

When we go to the doctor, we are often overwhelmed by the amount of information we receive and the strong emotions we feel, and it’s amazing how much we can miss.

My current doctors care about me very much and I like all of them. But ultimately, my relationship is based on their ability to keep me healthy. If I don’t see progress, I get a second opinion and it’s OK for them to know. It’s nothing personal. These doctors often consult with each other.

Most people don’t want to be a troublemaker, but be a squeaky wheel. Research showsBeing an empowered patient can improve health. I respect boundaries and am kind, but I am persistent. When I agree to a plan with the doctor, I don’t let up. It’s not always easy, but if I do everything that’s asked of me, it’s not my fault if a treatment doesn’t work.

Five exhausting weeks after giving birth, I was finally able to go home to my baby. It turns out my hematologist was right – I do indeed have aHUS.

Today, I’m doing pretty well for a chronic rare disease. There is no cure for aHUS, but it is one of the few rare diseases with an approved treatment. After nine months of dialysis, my kidney has partially regained function and I have stage 3 kidney disease. I currently have infusions every eight weeks to keep my aHUS from causing further damage, but otherwise I’m busy being a mom to my lively toddler.

Although it was a rollercoaster ride, I found my voice in that hospital bed. I learned the importance of standing up for my needs and, most importantly, trusting myself when something isn’t right.

Read more about Taylor’s story on Substack for girls with rare disease.

Taylor Coffman is a multifaceted creative from the East Coast. As an actress, Coffman has appeared in HBO’s “Silicon Valley” directed by Mike Judge, CBS’s “Life in Pieces,” Rachel Dratch’s “Late Night Snack,” and Ryan Murphy’s “FEUD.” Behind the scenes, she worked for many years at Jimmy Kimmel Live, one of the most listened to NPR stations in the country, KPCC, and as a podcaster at LAist Studios. She lives in Santa Monica with her husband, musician Zach Lupetin of Dustbowl Revival, their daughter, and a very needy rescue dog named Sunny.

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