My time on dialysis was the darkest part of my aHUS journey

Facebook Memories is one of my favorite features on that social media platform. It reminds users of what they posted that day in years past. This week, I came across a Facebook Memory from two years ago that stirred up a lot of emotions.

On Feb. 5, 2021, I was rushed into surgery to have my infected hemodialysis catheter removed. But what made the day pivotal was that, unbeknownst to me at the time, it would mark the end of my dialysis journey.

Back in September 2020, I’d been admitted to the intensive care unit after months of dealing with seemingly unrelated symptoms. I was dying from multiorgan failure and had to stay in intensive care for nearly two months. Eventually, I was diagnosed with atypical hemolytic uremic syndrome (aHUS) and learned that the rare disease was destroying my kidneys, liver, heart, uterus, and red blood cells. But my kidneys were damaged the most.

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Kidneys play the vital role of filtering toxins from our blood and turning waste into urine. Mine were functioning at less than 5%, so the first step in saving my life was to have a hemodialysis catheter placed in a large vein in my chest.

The catheter branched into two tubes: one to pull blood out of my body and pump it into a machine to be cleaned, and another to run the clean blood back into my body. There are other, more permanent options for hemodialysis access, but at the time, we were unsure about the severity of my case.

After everything I’ve been through while living with aHUS, I can say without a doubt that the worst part of my journey was being on dialysis. Many people with my disease end up needing dialysis for years, but I’m not sure how long I would’ve survived on it.

The challenges of dialysis

In my five short months on dialysis, I experienced numerous complications. My catheter became infected twice, had several clotting issues, and even fell out of my chest once. Having a port catheter was also painful — I almost always had some level of shooting pain in my chest. And the infections and surgeries caused permanent nerve and muscle damage in my right shoulder that I still struggle with today.

Hemodialysis ports must also be kept dry to minimize the risk of infection. A simple shower became a daunting task because I had to avoid getting my right side wet. This also meant no swimming with my children.

But the worst part was being unable to care for my children. Dialysis took up to five hours, three days a week, and I spent another day receiving my Soliris (eculizumab) infusion. Before I became sick, I worked a job that included free child care, but I lost that option when I could no longer work. Between my medical schedule and lack of income, it was impossible to keep my children with me. My boys had to live with their paternal grandparents in another state for five months.

I hate to speak negatively about my dialysis experience because so many people require the treatment. According to aHUS News, approximately 70% of aHUS patients need dialysis at some point, and 1 in 5 need it for the rest of their lives.

But dialysis was the darkest point in my medical journey. It kept my children from me, it was physically exhausting, it caused gastrointestinal issues, and it made me constantly cold. I was always in pain and could feel my body getting weaker. I even witnessed patients dying in dialysis. I knew my mental health couldn’t take it much longer. Depression was knocking on my door like the slow, steady ring of a church bell, and my complications were becoming more severe.

When I headed into surgery two years ago, I was prepared to start a course of strong antibiotics and get a new port catheter. But to my surprise, once the infection had been addressed, my nephrologist told me that my kidney function was at 15%. And at 15% or higher, a patient can go off dialysis.

Two years ago, I had my dialysis port removed permanently. And despite the pain during surgery, it was one of the best days of my life.

My kidneys haven’t recovered much more since then. Their function hovers between 15% and 22%. There’s always a risk of me getting sick, my aHUS relapsing, or my kidneys giving up. But my eculizumab infusions seem to have helped my kidneys heal.

My nephrologist said that never in his career has he seen another patient so close to death come off of dialysis. So for now, I’m going to revel in this success, for however long it lasts. My progress has been nothing short of miraculous, and I can’t help but feel like I’m “Walking on Water.”

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.