Just along for the ride on the roller coaster of life with chronic illness

I’ve come a long way since that fateful day in September 2020 when I dragged myself into the emergency room with my 4-year-old on my hip and my 5-year-old trailing behind me. Nearly six years later, life with a permanent illness is like riding a roller coaster. One minute I’m up and feeling decent enough, the next I’m down.

Recently, things have taken a downward turn.

Let’s be real, I feel unwell most of the time. Six years ago, I developed an ultra-rare disease called atypical hemolytic uremic syndrome (aHUS) and sustained permanent damage to my kidneys, liver, heart, and uterus (which ultimately led to a hysterectomy) because months had gone by before I sought medical attention.

I now live with stage 4 chronic kidney disease, May-Thurner syndrome, hypertension spikes, chronic fatigue, anemia, immune thrombocytopenia, a myriad of other comorbidities, and receive regular monoclonal antibody infusions.

I also occasionally have severe edema in my lower legs, ankles, and feet, which makes walking long distances and sitting or standing for too long difficult.

In addition, I have lab work done every 14 days, because even with regular treatment, I’m still at risk of my immune system destroying my red blood cells or platelets, or of developing blood clots. My condition is stable, meaning my labs are usually the same. But my levels tend to freak out doctors not familiar with my norms.

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Ups and downs

Lately, the pain from swelling has been so bad that it wakes me from a dead sleep. I’m unable to get back to sleep without taking a large dose of prednisone and pain medication and elevating my feet.

My blood pressure also has become unstable, and has been accompanied by chest pain, indigestion, and headaches. Then the worst flare of scleritis I’ve ever experienced happened, with blurry vision in my left eye. It’s incredibly painful and distracting.

Then, one day, while shopping, a headache struck — very sudden, sharp, and behind my left eye. I rubbed my eyes to relieve the pressure, but I felt my scope of vision begin to shrink, which only happens when I’m about to pass out.

Darkness enveloped me, and I felt the cold floor on my lower legs and arms. Then lots of noise and voices. I must’ve been out for several seconds, and when I finally opened my eyes, someone was calling 911. I tried to stop them, but I couldn’t form words.

Emergency medical services arrived and helped me to a seat, and they checked my oxygen and blood pressure, which was 195/148 mm Hg — the highest it’s been in months.

When this kind of thing happens, it typically means my kidney function has fallen below 15%, and my red blood cell and platelet counts have dropped, too, all indicating a possible relapse, a problem with medication, or that I’m trying to do too much. My kidney function hasn’t been above 21% since I got sick, and usually hovers between 16% and 20%, barely high enough to stay off dialysis.

Once they got me to the emergency room, my blood work was unexpectedly normal, and my kidney function was the highest it’s ever been at 23%! Most aHUS patients don’t see much improvement in kidney function or damage years into a diagnosis, so I was shocked — ecstatic, even.

After two days of testing, I was released with no real answers, and my blood pressure was high again in the chemo lab a few days later. Edema and scleritis are still problems.

So to sum up, the best labs I’ve had in years are coinciding with some of my worst pain. Is it stress? Is the efficacy of my medication changing? Poor pacing? Post-exertional malaise? The weather? My environment? I may never know, but that’s life on a roller coaster. I’m just along for the ride.

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.