The things I miss from my life before aHUS

I pushed the door open and was met with blinding sunlight and strong sea winds. The smell of salt water and grilled chicken filled the air, as did the sound of Caribbean steel drum music. I traversed several decks on the cruise ship — moving around lounge chairs, descending multiple sets of stairs, heading to a bar to grab a drink — all without breaking a sweat.

I felt full of energy and eager to start a busy day. Drinks, breakfast, an excursion in the Bahamas, a spa appointment, some gambling — I had the time and energy to do it all, because this was life before I nearly died from a rare disease.

I love traveling and adventure, whether it’s visiting another country, spending a long weekend in a different city, or even taking a day trip to check out a fun local event. You name it, I used to do it: amusement parks, hiking, rock climbing, ski trips, Las Vegas, cruises, Mayan ruins, street festivals, and more. Friends and family always called me “the cruise director” because I’d carefully plan and craft every detail of our trips with ease. But nearly dying completely changed how I live.

In September 2020, I was at the top of my game. As a single mom starting a new high-paying job, I felt unstoppable. So when I started feeling unwell, I chalked it up to not drinking enough water or getting enough sleep. Boy, was I wrong. I was ultimately admitted to the intensive care unit for almost two months,  because I was dying from multiorgan failure.

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The impact of aHUS and its comorbidities

I’d developed an ultrarare disease called atypical hemolytic uremic syndrome (aHUS) that caused my immune system to attack and destroy my red blood cells in a process called hemolytic anemia. This also led to thrombotic thrombocytopenia purpura, which caused little blood clots to form in my organs — specifically my kidneys, liver, heart, and uterus. I’d already been diagnosed with immune thrombocytopenia back in 2018, and that condition was flaring as well, destroying my platelets.

Not only was much of the organ damage permanent, but I also developed additional comorbidities along the way. This is the part that changed my life forever. Because I’m permanently anemic, I don’t get enough oxygen to my limbs, meaning I have to stop and catch my breath while walking up just two flights of stairs.

My aHUS treatment, Soliris (eculizumab), is a monoclonal antibody infusion that causes side effects similar to those of chemotherapy. Fatigue, hair loss, bone and muscle pain, brain fog, muscle weakness, and shortness of breath are among the most common side effects I experience. This also makes any kind of physical activity difficult for me.

My kidneys function at around 16%-20%, so fluid in my body isn’t processed properly, causing it to pool in my ankles and feet. This stretches and bruises my skin and leads to nerve damage and numbness in my toes. Because of the edema, I’m in severe pain nearly 24/7. Walking or standing for long periods of time is impossible, and sometimes the pain is so bad I can’t walk at all.

All of this means no more long hikes, no more amusement park days, much less time at street festivals, and no more chaperoning school field trips. Simply traversing an airport requires careful planning. My family used to take cruises a few times a year, but they involve a lot of walking. I’ve been on one cruise since I got sick, and while it was still fun, getting around was difficult. I had to take lots of breaks.

There are so many things I miss from my old life. Even my oldest child talks about how things “used to be” before I got sick, which breaks my heart. I have good and bad days, so my general rule is to just do what I can, when I can. Stressing about what I can’t do anymore doesn’t help. It’s important not to mentally beat myself up about it and just take things one day at a time.

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.