aHUS has changed my life in drastic and unexpected ways
What I miss — and don't miss — about life before I became sick
Unbeknownst to me, when I walked into the emergency room on Sept. 16, 2020, my life was about to completely change forever. I assumed I had an infection or COVID-19 and would be given medicine and a doctor’s note to stay home and rest. But that wasn’t the case. Instead, I remained in the intensive care unit for two months and was considered terminally ill.
When I was admitted to the hospital, I was suffering from multiorgan failure. My kidneys, liver, heart, and uterus were being destroyed by blood clots, and my red blood cells, platelets, and plasma were being destroyed faster than my body could produce them. My immune system was killing me. This was mostly due to an ultrarare disease called atypical hemolytic uremic syndrome (aHUS), as well as thrombotic thrombocytopenic purpura and immune thrombocytopenia.
Much of the organ damage was permanent and still greatly affects me five years later. And my medical issues brought along multiple comorbidities, including stage 4 chronic kidney disease, May-Thurner syndrome, severe uncontrolled hypertension, fatigue, postural orthostatic tachycardia syndrome, medical post-traumatic stress disorder, severe edema, nerve damage, brain fog, anemia, uncontrolled weight fluctuations, and post-exertional malaise. I’ll also need a monoclonal antibody infusion, which causes chemotherapy-like side effects, every 14 days for the rest of my life.
Things I miss — and things I don’t
This all began when I was 36. I had no idea how many things I would no longer be able to do, and sometimes, I think that’s the hardest part of all of this. Before that hospitalization in 2020, I was mostly healthy and had a “normal” life. The change was sudden. To lose so many physical capabilities in an instant was devastating. It’s like I was trapped in a body I no longer recognized.
At 36, I was at the top of my game. I’d just lost 130 pounds and was exercising regularly, remodeling my first home on my own, working full time at a new job, extreme couponing, and chasing around two little kids as a single mom. I was unstoppable — or so I thought.
Today, I have to stop and rest halfway up each flight of stairs in my home. I take nine medications daily just to function, along with a probiotic, because the medications tear up my stomach. I need to rest after simple tasks, such as taking a shower or moving laundry from the washer to the dryer.
I miss being able to jump out of bed and rush out the door. I miss being able to get up and do any home projects I want to do. And I especially miss being able to run around with my boys and walk around amusement parks, zoos, farms, and museums. I miss teaching, and I miss the social interactions that came with work.
Thankfully, there are a few things I don’t miss at all, such as working full time. I was working myself into an early grave, prioritizing work above everything else. I also don’t miss menstrual cycles. Because of aHUS, I had to have a hysterectomy at age 37, which was life-changing.
Most of all, I don’t miss how little free time I had in my schedule. Before, life was a constant blur of events, routines, and places to be. I spent hours in the car every day just commuting to work. Now, it’s like I have all the time in the world. I’m able to spend quality time with my children, maintain the house, and focus on my health so I can be here longer 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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