The multiple ways I’m living with chronic pain because of aHUS

Between symptoms and treatment side effects, the hurting can be debilitating

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by Shalana Jordan |

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Most of us go to great lengths to lessen or get rid of pain, whether we’re using over-the-counter (OTC) or prescription medications, anesthesia, nerve blocks, acupuncture, meditation, or other methods. But what do we do when that pain becomes chronic?

According to a report published in April by the U.S. Centers for Disease Control and Prevention, 20.9% of American adults experienced chronic pain in 2021, while 6.9% experienced high-impact chronic pain that year.

For most of my life, pain was never an issue for me. I had a high pain threshold and no major injuries.

But in mid-2020, I started having migraines and lower back pain. I’d just started a new job working 10 hours a day. I wasn’t getting enough sleep or drinking enough water, so I brushed off my symptoms and took Advil (ibuprofen) as needed. But the pain persisted and worsened.

A migraine lasting two weeks left my head pounding, as if it were in a vise grip. I could feel my pulse in my eyes. My back pain was unrelenting as well. I was constantly rubbing my lower back to ease the ache.

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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.

A near-death experience makes holidays look a little different

On Sept. 16 that year, my symptoms came to a head. Not only was I in pain, but I’d developed symptoms suggesting COVID-19, including a fever of 104 F and vomiting blood. That was serious. I went to the emergency room, where my blood pressure measured 245/165 mmHg. (A normal reading is less than 120/80 mmHg.) The nurse audibly gasped.

“Um, let’s take that blood pressure again. There’s no way it’s that high.” Her tone was light, but I could also sense uneasiness.

The results were the same. The nurse gulped and entered the data, which activated a red light above my triage alcove and a blaring alarm. I was admitted to the intensive care unit, where I remained for nearly two months.

The painful journey continues

As it turned out, I was in kidney and liver failure, my heart and uterus were damaged, and my platelets and red blood cells were being destroyed. After four weeks, I was diagnosed with atypical hemolytic uremic syndrome (aHUS). My initial treatment plan involved dialysis, plasmapheresis, 18 blood transfusions, constant blood draws, and chemotherapy with Soliris (eculizumab).

Blood draws were painful. It took several sticks to get any blood, and I hate needles. But I soon became a pincushion covered in huge black and purple bruises because of my low platelet count. My blood pressure would spike just from hearing the sound of the phlebotomy cart rolling down the hallway. (It had a damaged wheel that caused a unique squeak.)

I also had a port catheter inserted into my chest for dialysis. Both the surgery and the port itself were painful. Each time I bumped it, it’d shoot sharp pain up my chest — like a hot knife being pulled out. Over the next five months, my port was the source of infections, more surgeries, and much pain.

Four weeks into my ordeal, I fell and punctured my liver. Words can’t accurately describe the incessant pain I felt from the huge hematoma that filled nearly half of my torso. The unrelenting throbbing and aching wouldn’t let up no matter what I did.

And because of my severe liver and kidney damage, I was advised to stop taking OTC pain medications like Advil and Tylenol (acetaminophen). I didn’t have anything I could take, no matter how much I hurt.

I also was dealing with painful side effects from chemotherapy. For me, it causes muscle and bone pain, migraines, and all-over, flulike aches. This pain is chronic, so I deal with it all the time, no matter how much I rest.

I even developed several comorbidities that caused additional chronic pain, including uterine and kidney damage, May-Thurner syndrome, and frequent headaches from uncontrolled hypertension.

My uterine damage resulted in a menstrual cycle that lasted nine months; it didn’t end until I had a hysterectomy. To get the surgery, I had to suffer though nine months of heavy blood loss, blood transfusions, invasive and painful testing and exams, and cramping.

The cramping was so bad that it’d wake me from a dead sleep, so intense and consistent that it affected my mental health. I’d shake uncontrollably and experienced anxiety and chaotic, racing thoughts. I felt that I was losing my mind.

Eventually, I met with a pain management doctor who started me on a regimen of prescription pain medication as well as alternative treatments like heat. It doesn’t negate my pain, but it takes the edge off, making it possible for me to function.

Chronic pain is a curse I wouldn’t wish on anyone. It’s unreal how much even moderate pain management changed my life and improved my mental health. It’s allowed me to contribute to society and be a better mother for my family.

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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