The days surrounding my aHUS diagnosis were a lonely time for me
I went to the emergency room at the height of the COVID-19 pandemic
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Life doesn’t get much lonelier than sitting alone in the intensive care unit (ICU) during the height of the COVID-19 pandemic, cut off from what was happening outside, yet the only patient on the floor who could move around.
I went to the emergency room in September 2020, not feeling well. I was a single mom in a new city, and I had my two young kids in tow. I assumed I’d wait a few hours, be prescribed some steroids, and be sent home with a doctor’s note to miss some work. I thought I was dealing with COVID-19 or even a flare of my rare blood disease, immune thrombocytopenia (ITP), which I was diagnosed with in 2018.
My most prominent symptoms in the ER were exhaustion and barely being able to walk or stand. But over the past 48 hours, I’d begun coughing up blood and having nosebleeds, both signs of an ITP flare.
My blood pressure during intake was high enough to scare the nurses into taking me straight back. I was having an ITP flare, which was OK by me, as I knew how to treat that. But when a doctor came in to discuss all of my blood work, ITP wasn’t the only issue. I was also in multiorgan failure. I had lived with lupus nephritis for most of my life; maybe that was the issue?
My 4- and 5-year-olds were running amok in the ER, so my in-laws came to pick them up. When my mother-in-law walked in, I burst into tears, but I didn’t know in that moment that this would be the last time I’d see my boys for nearly two months. After tearful goodbyes, I was whisked away to surgery to have a dialysis port placed in my chest.
A new diagnosis
Being sick and living each day in a state of unknowing was lonely and scary. During the height of COVID-19, visitation protocols were limited and strict. Patients were allowed only one visitor per day for two hours. Many of my friends lived a few hours away, so a long drive for them was too much.
My best friend stayed at my house so she could visit me each day at the beginning. Another friend visited once, and so did my brother-in-law and his wife. But that was it.
Many days were filled with the slow, monotonous beeping of heart monitors echoing in the hallways, or the occasional shuffling of feet rushing to a room when a patient was in crisis. The cooking show “Chopped” seemed to play nearly 24/7 on whatever channel the TV was on.
I was ultimately diagnosed with atypical hemolytic uremic syndrome (aHUS), which we now consider my primary disease. It was another rare disease added to my list, one that causes my immune system to attack my red blood cells and tiny blood clots to form in several organs.
My lifelines
Having a definitive answer actually made me feel lonelier. I didn’t know anyone my age dealing with so much medically. But being stuck in bed gave me time to find support groups on social media. These people became a lifeline, and I made many lifelong friends.
During the pandemic, hospital employee turnover was at an all-time high, so many of the nurses I encountered quit or left for other opportunities. I never had the same phlebotomist twice, despite having blood drawn two to four times a day. I wonder sometimes how the hospital managed to stay running.
Those few nurses who stuck it out were my main lifeline. They were a huge part of how I mentally and emotionally made it through those dark days. They’d sneak me little late-night popsicles, ask about my children, and coax me out of bed to walk my ICU lap each day. I wish I could visit that hospital, find them, and thank them.
Loneliness and depression can affect your physical health, not just your mental health. Staying grounded in each moment and having a light at the end of each tunnel are essential for surviving long-term hospital stays. It’s hard to fight for tomorrow if you don’t see a way through today.
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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