I Spent Several Weeks Near Death In the ICU. Having My Doctor Do This 1 Thing Might Save My Life.

What’s your name? Taylor Coffman.

Do you know where you are? Hospital.

What date? February 17, 2022.

Who is the president? Biden.

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

I tried to respond to my new internist, but the answers weren’t coming from me. Each one caused a stutter the size of the Mariana Trench — and it freaked me out.

Plus, my movements were so severe, my arms were almost useless.

I’ve been in the hospital for a month. Zach, my husband, was at home in our apartment caring for my newborn with my mother. It wasn’t easy for them: small apartment, new baby, one bathroom, my life hanging in the balance.

For the past few weeks, I’ve been cycling in and out of the ICU. Zach even had “the talk” – a doctor called in the middle of the night to tell him I might not be able to come home. Many thought I would not survive. They didn’t really know what was wrong with me, except that everything was wrong with me.

Four weeks earlier, I gave birth to my baby via caesarean section. A few moments later, I was rushed into another operation because my vital organs were starting to decline and I was bleeding rapidly.

I didn’t even get to hold my baby. Nothing happened – just chaos, panic, and then I didn’t wake up from the anesthesia. It was a real nightmare. I finally woke up, and four days after giving birth, I finally saw my daughter before she came home – without me.

After giving birth, I endured three rounds of ICU intubations, multiple abdominal surgeries, a body full of blood clots, heart failure and kidney failure with a bit of severe sepsis and pneumonia, as well as a long list of other scary conditions I never wanted to have. Go to Google. I am a forever changed and half dead person.

After I was taken off the ventilator for the last time – and I could talk again – a rotating number of doctors visited me every day, and told me various things about my condition. It felt like an absurdist theater play. I had almost the same conversations over and over again in a cycle of frustration and a bleak maze of next steps.

My case was very challenging because many of my body’s systems were failing and required multiple doctors. I have a maternal fetal medicine team, a resident doctor, an internal medicine doctor, a heart doctor, a hematologist, a nephrologist, an infectious disease specialist, a pulmonary doctor, a surgical team and maybe a few others that I forgot.

“I’m a project manager in my day job, and you all have to be organized in your work across multiple fronts,” I complained to one of my many doctors. “Everyone tells me something different.”

In response to my statement, my doctor finally created a text chain so they could all communicate in one place.

It’s possible that the text chain saved my life — and it probably never would have been created if I hadn’t said something.

"This is a moment from the nine months I underwent dialysis in 2022," the author wrote.“These are moments from my nine months on dialysis in 2022,” the author wrote.

I realized, if I wanted to live, I had to organize my recovery project. I have power. I can assert myself. My doctors care deeply about my survival, so I think it’s time to start asking them for what I need rather than just passively enduring the waves of medical torture I’m experiencing. My skin was gray and my kidneys weren’t working, but I wasn’t weak – not that it mattered most. I’ve got my mind and my voice back, so I need to use them.

I was far from test results from getting an official diagnosis, but my wise hematologist had a theory that I had a terrible disease called atypical hemolytic uremic syndrome, or aHUS. It is very rare and kills many people who get it. This disease especially attacks women because it often hides in the body until a trigger, such as pregnancy, triggers it.

After a few stable days, I started to feel increasing shaking and stuttering in my body. I tried to project manage by sharing my new symptoms with the doctor. “It’s not me,” I said. “There’s something else wrong.”

My newly assigned internist told me it was probably a side effect of my medication. Another doctor suggested that I was stressed and suggested that I take clonazepam to relieve my anxiety.

Suddenly, a few hours later, everything in my perception began to repeat itself mysteriously three times in a row, like being caught in a terrible deja vu loop, and then I couldn’t speak anymore.

It turns out my body was poisoning my brain with toxins because my kidneys were failing. I desperately needed dialysis, but there were no machines available in this large, state-of-the-art hospital… and my nightmare continued longer than it should have.

I was very angry and frustrated. Despite continually informing many health care providers about my symptoms, I was now at the point of toxic encephalopathy and experiencing aphasia and nervous system tremors along with deja vu.

Why was I fired when I shared the warning signs I was experiencing?

The data doesn’t look good in the system. A 2009 study showed that middle-aged women who had the same symptoms of heart disease as men were twice as likely to be diagnosed with mental health problems. The Journal of the American Heart Association found that women who might be having a heart attack waited 29% longer in the ER than men.

Recently, the CDC reported 1 in 5 women experience abuse during their pregnancy, and the statistics are much worse for Black women, resulting in tragically higher rates of maternal death.

I know that doctors often struggle in a broken system. I sympathize with their challenges and exhaustion. But the medical industry and educational institutions – not patients – must take steps to address these pressures.

I’m also not saying 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 that patients can provide better support to our healthcare providers, and I know that interacting with them and taking an active role in our care is not only important – it can be the difference between life and death.

Now, my approach to healthcare is different.

The author is on holiday with her husband and daughter.

Courtesy of Taylor Coffman

The author is on holiday with her husband and daughter.

While doctors certainly have knowledge and training that I do not have, I am an expert myself. We work together and really listen to each other to make the best decisions about how to treat my condition. I encouraged them to communicate in a clear way that helped me understand what was really going on and I continued to voice my concerns until I was sure that they understood what I was going through.

When I knew something was wrong, but I wasn’t sure what exactly, I became a researcher. I organize a bullet-point list of how I’m feeling in the notes app on my phone and take it with me to my appointment.

I also do my homework. Although many doctors say they don’t like it when patients search for information on the internet – and the symptoms of googling can be problematic – a new study suggests that it may not be as harmful as thought, and there are many good digital resources to consult.

If I want a test or procedure that is not approved by the doctor, I ask them to annotate my request in the notes. Written notes have weight. I also often ask medical professionals if it’s OK to record appointments using my phone’s voice memo recorder.

When we see a doctor, we are often overwhelmed by all the information we receive and the big emotions we feel and it is amazing how much we can miss.

My current doctor is invested in my care and I love it all. But, ultimately, this is a relationship based on their ability to keep me well. If I don’t see progress, I seek a second opinion, and it doesn’t matter if they find out. This is nothing personal. These doctors often end up consulting with each other.

Most people don’t want to be a squeaky wheel, but a squeaky wheel. Research shows being an empowered patient can improve health outcomes. I respect boundaries and I am kind, but I am persistent. If I commit to a plan with a doctor, I won’t slack off. This is not always easy, but when I do everything that is asked of me, if treatment does not work, then it is not my responsibility.

Five exhausting weeks after giving birth, I finally went home to meet my baby. Turns out my hematologist was right – I had aHUS.

Currently, I’m doing pretty well by chronic rare disease standards. There is no cure for aHUS, but it is one of the few rare diseases for which treatment is approved. After nine months on dialysis, my kidneys returned to function leaving me with stage 3 kidney disease. I currently get an infusion every eight weeks so my aHUS doesn’t cause more damage, but otherwise, I’m busy being a mom to my active toddler.

Even though the experience was a roller coaster, I found my voice in that hospital bed. I learned the importance of advocating for my needs and, most importantly, trusting myself when something goes wrong.

Read more about Taylor’s story on the Rare Disease Girl Substack.

Taylor Coffman is a multi-hyphenate creative from the East Coast. As an actor, Coffman has recurred in HBO’s “Silicon Valley” directed by Mike Judge, CBS’ “Life in Pieces,” Rachel Dratch’s “Late Night Snack,” and has appeared in Ryan Murphy’s “FEUD.” Behind the scenes, he worked for years on Jimmy Kimmel Live; one of the most listened to NPR stations in the country, KPCC; and in podcasting at LAist Studios. She lives in Santa Monica with her musician husband, Dustbowl Revival’s Zach Lupetin, her daughter and a much-needed rescue dog named Sunny.

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