A sleep disturbance can add to the stress of life with aHUS

When a doctor's appointment prompts sweat and an all-senses crisis

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by Shalana Jordan |

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banner image for Shalana Jordan's column Walking on Water, which features a woman on the left walking on a greenish body of water.

Doctor appointments: They’re the bane of my existence but also a constant part of my life. Nephrologist, hematologist, primary care physician, gynecologic oncologist, pain management doctor, physical therapist, cardiologist — the list goes on. I see each of these doctors regularly.

I nearly died in September 2020 and spent two months in intensive care with multiorgan failure. An asymptomatic bout of COVID-19 had activated atypical hemolytic uremic syndrome (aHUS), which caused permanent kidney, liver, uterine, and heart damage, as well as severe hemolysis, or a breakdown of red blood cells. That’s why doctor appointments are a permanent fixture in my life.

The day was like any other; I had a routine appointment. The doctor and I always talk about lab work, daily symptoms, and any new or worsening issues I’m experiencing. And while the visit seemed as normal as any, I discovered that a new issue had been plaguing me.

During my medical ordeal, I’d fallen and punctured my liver, which caused a huge hematoma that filled half of my torso. Hematomas are incredibly painful and can take a long time to dissolve. Over two years later, mine can still be seen on ultrasounds, although it’s much smaller.

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I’d been experiencing intensifying pain, especially if I did chores, pushed a shopping cart, or walked longer then five minutes. A cardiologist recently sent me for ultrasounds of several things, so we checked the hematoma as well. It’s still there and around the size of my palm.

After the nurse collected my information, my primary care doctor walked in. She asked how I’d been, and we made small talk for a minute before she cut me off.

“Ms. Jordan, I’m sorry to jump ahead, but I’ve been dying for you to come in to discuss what cardiology sent over,” she said. Her tone sounded off from her usual relaxed demeanor.

“OK, lay it on me,” I replied. Come on, I almost died, I thought. I can handle anything at this point.

“You’re pregnant.”

Insert silent blinking. I stared at her, waiting for her to tell the punchline of this joke. But she just stared back at me.

“Very funny,” I said. “I don’t have a uterus, cervix, or fallopian tubes, so there’s literally no way I can be pregnant.” I’d had a hysterectomy because of aHUS complications in July 2021.

Her look became serious, and she stared at me. I stared back. What are we doing? Having a standoff? She turned and pulled out the ultrasound results and laid them across the counter. We both leaned in and stared at them. And there it was. What we’d thought were hematoma remnants were instead a fully formed placenta and fetus.

“We would need to do another ultrasound,” the doctor said, “but if these are correct, you’re around 20 weeks pregnant.” Her tone and the off-putting hitch in her voice sounded excited and worried at the same time. I just stared back at her.

“Absolutely not. Nope, nope, and nope,” I said. “There’s no way. A baby can’t survive floating around in a torso. And my plumbing doesn’t even work like that anymore! No — just no.”

I was mad, baffled, and confused. I could feel my face getting hot and my heart rate increasing. I felt sick. Yes, I have the worst medical luck, but there’s no way. My mouth started to water, and I knew vomit would follow.

My doctor said she’d at first thought the scan was wrong. But she then had all the other doctors in the practice examine it. It was real.

“So it is pretty much impossible,” she said. “But there have been rare cases of babies developing outside the womb in an abdominal pregnancy. It happens in 1.4% of ectopic pregnancies.”

I couldn’t hold it in anymore. I was going to vomit. And the instant I went to puke …

I woke up. It was all a dream!

I sat up in bed, able to taste vomit in the back of my throat. My forehead was sweating, and my back felt sticky. I had a headache from the rush of adrenaline. It was still dark out. Then shooting pain shot up my left leg like a lightning strike. Pain tends to trigger my nightmares, and in this case, my May-Thurner syndrome, which affects a vein in the pelvis, was the bad guy.

This dream is a type of sleep disturbance I deal with several times a week because of pain. I have vivid and realistic nightmares. The more intense the pain, the worse the nightmares are. These dreams cause me to sweat and activate senses other than sight. I taste things, feel things, and smell things. It’s definitely one of the strangest parts of living with a rare disease.

Sometimes I’m exhausted and can’t keep my eyes open. Other times I have horrible insomnia. My sleep patterns and dreams have been forever disturbed because of my rare disease and associated comorbidities. While frustrating and intense, they at least make for great tales.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.


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