I spent weeks near death in the ICU. I asked my doctors to do that first thing that probably saved my life.

The author is in the intensive care unit during a visit with her daughter.

The author is in the intensive care unit during a visit with her daughter.

The author is in the intensive care unit during a visit with her daughter.

What is your name Taylor Kaufman.

Do you know where you are? the hospital.

What is the history? 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 respond to my new internist, but the answers wouldn’t flow out of me. Each one caused a stutter the size of the Mariana Trench, and it terrified me.

Plus, I was shaking so badly, my arms were practically useless.

I was in the hospital for a month. My husband, Zach, was home in our apartment taking care of my newborn with my mother. It wasn’t easy for them: a small apartment, a new baby, one bathroom, and my life on the line.

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

Four weeks ago, I gave birth to my baby by caesarean section. Moments later, I was transferred to another surgery because my vital organs were beginning to fail and I was bleeding rapidly.

I couldn’t even hold my baby. There was no skin on skin, just chaos and panic, and then I did not wake up from the anesthesia. It was a living nightmare. I finally woke up, and four days after giving birth, I finally met my daughter before she went home – without me.

After I had my baby, I endured three rounds of intubation in the ICU, multiple abdominal surgeries, a body full of blood clots, heart failure and kidney failure with a dash of severe sepsis and pneumonia and a long list of other scary conditions that I never wanted to Google . I was a forever changed, half-dead person.

Once I was taken off the ventilator for the last time — and able to speak again — a rotating team of doctors visited me every day, telling me different things about my condition. It seemed like an absurd play. I had pretty much the same conversation over and over again in a cycle of frustration and a maze of ambiguous next steps.

My case was particularly difficult because I was suffering from multi-system failure, which required a large number of doctors. I had a maternal-fetal medicine team, a resident, an internist, a cardiologist, a hematologist, a nephrologist, an infectious disease specialist, a pulmonologist, a surgical team, and I may have forgotten a few others.

“I’m a project manager at my day job, and you all have to work systematically in different areas,” I complained to one of my many doctors. “Everyone tells me something different.”

In response to my words, my doctors finally put a text chain together so they could all communicate in one place.

The text chain may have been what saved my life, and it probably wouldn’t have been created if I hadn’t said anything.

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

I realized, if I was going to live, I had to run a business to manage my recovery. I had the strength. I can confirm myself. My doctors cared deeply about my survival, so I thought it was time to start asking them for what I needed instead of passively riding the wave of medical torment. My skin was gray and my kidneys weren’t working, but I wasn’t weak—not where it mattered most. I had my mind and my voice back, so I needed to use it.

I was far from an official diagnosis after many tests, but my wise hematologist had a theory that I had a particularly nasty disease called atypical hemolytic uremic syndrome, or AHUS. It is very rare and kills many people who get it. The disease particularly affects women because it often hides in the body until a trigger – such as pregnancy – releases it.

After a few stable days, I began to feel increasingly shaky and stuttering in my body. I tried to manage the project by sharing my new symptoms with my doctors. “This is not so I“There’s something else really wrong,” I said.

My newly appointed internist told me it might be a side effect of my medication. Other doctors suggested I was nervous and recommended taking Clonazepam to ease my anxiety.

Suddenly, after a few hours, everything in my awareness began to mysteriously repeat itself three times in a row, as if I was stuck in a terrifying episode of déjà vu, after which I could no longer speak.

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

I was so angry and frustrated. Despite several caregivers keeping me updated on my symptoms, I was now on the verge of developing toxic encephalopathy and experiencing aphasia and nervous system tremors with déjà vu.

Why was I fired when I talked about the warning signs I was experiencing?

the Data It does not look fondly on 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 have a mental health problem. the Journal of the American Heart Association found that women who suffer a heart attack wait in emergency rooms 29% longer than men.

at recent days, The Centers for Disease Control reported One in five women experiences abuse during their pregnancy The statistics are noticeably worse for Black women, resulting in tragically higher rates of maternal mortality.

I know that doctors often have a hard time dealing with a broken system. I sympathize with their challenges and fatigue. But the medical industry and educational institutions – not patients – should take strides to overcome these pressures.

Me too no Saying that we should always distrust our doctors. I believe in science and I believe in their training and experience. But after everything I’ve been through, I now know that there are ways patients can better support our providers, and I know that engaging with them and playing 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 writer is on vacation with her husband and daughter.The writer is on vacation with her husband and daughter.

The writer is on vacation with her husband and daughter.

The writer is on vacation with her husband and daughter.

While doctors certainly have knowledge and training that I don’t 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 encourage them to communicate in a clear way that helps me understand exactly what’s going on, and I continue to express my concerns until I’m convinced they understand what I’m going through.

When I know something is wrong, but I don’t know exactly what it is, I become a researcher. I organize a list of bullet points about how I’m feeling in the notes app on my phone and bring it 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 lead to problemsnew Study shows It may not be as harmful as previously thoughtThere are many great digital resources you can consult.

If I want a test or procedure that my doctor doesn’t agree I need, I ask them to annotate my request in the notes. Written records carry weight. I I often ask medical professionals if it’s okay to record the appointment using my phone’s voice memo recorder.

When we see doctors, we are often overwhelmed by all the information we receive and the big emotions we feel, and it’s surprising how much we can miss.

My current doctors are invested in my care and I love them all. But, ultimately, it’s a relationship built on their ability to keep me safe. If I don’t see progress, I’ll get a second opinion, and it’s okay if they know that. It’s not personal. These doctors often end up consulting with each other.

Most people don’t want to be a squeaky wheel, however Be a squeaky wheel. Research has shownBeing an empowered patient can improve health outcomes. I respect boundaries and I’m gentle, but I’m persistent. If I stick to a plan with my doctor, I won’t slack off. It’s not always easy, but when I do everything I’m asked, if the treatment doesn’t work, it’s not my fault.

Five exhausting weeks after giving birth, I finally returned home to my baby girl. It turns out my hematologist was right, I have AHUS.

Today, my condition is very good by chronic rare disease standards. There is no cure for AHUS, but it is one of the very rare diseases that has an approved treatment. After nine months of dialysis, my kidneys had regained some function and left me with stage 3 kidney disease. I currently get injections every eight weeks to prevent my AHUS from causing further damage, but other than that, I’m busy being a mum to my active little boy.

While the experience has been a roller coaster, I found my voice in a hospital bed. I’ve learned the importance of standing up for my needs and, more importantly, to trust myself when something is wrong.

Read more about Taylor’s story on Girl with a rare disease Substack.

Taylor Kaufman is a multi-hyphenate creative from the East Coast. As an actor, Kaufman has appeared in HBO’s “Silicon Valley” directed by Mike Judge, CBS’ “Life in Pieces”, Rachel Dratch’s “Late Night Snack” and Ryan Murphy’s “FEUD”. She worked behind the scenes for many years at Jimmy Kimmel Live; one of the most listened to NPR stations in the country, KPCC; And on the LAist Studios podcast. She lives in Santa Monica with her musician husband, Dust revivalZach Loubitin, her daughter, and a very needy rescue dog named Sunny.

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