Underestimating my medication regimen was a dangerous mistake
I should've listened to my nurse, who warned me of the dangers
“Take one dose, three times daily.” “Take one dose, once daily with food.” “Take one dose every four to six hours or as needed.” “Take one dose with 8 ounces of water.”
Like me, many people with chronic illness have to manage a complicated list of medication instructions every day of their lives. When I left the hospital for the first time, I had no idea what awaited me.
In September 2020, I nearly died of a rare disease called atypical hemolytic uremic syndrome (aHUS). Suddenly, a disease I’d never heard of became a household name in my life.
aHUS causes hemolytic anemia, a condition in which red blood cells are destroyed faster than they’re produced; and thrombocytopenia, which is a low blood platelet count. Both of these conditions can be deadly. All of this sent me into multiorgan failure.
I spent nearly two months in the ICU while doctors worked on diagnosing me. My treatment plan was arduous and taxing on my body and consisted of chemotherapy, 18 blood transfusions, immunizations, kidney dialysis, plasmapheresis, and more.
While I was nearly dying, outside the hospital, life went on. Bills didn’t care that I was sick. I had two little boys I hadn’t seen in five weeks due to COVID-19. I had to get out of the hospital.
“I’m gonna say this again: I really don’t think this is a good idea,” MacKenzie, one of my favorite nurses, told me.
“I know, but I need to get back to real life,” I replied. “I’ve missed work, I have bills piling up, and I miss my kids. I have a diagnosis, so I have a treatment plan.”
MacKenzie was young, bright, sweet, and motivated. But my usually level-headed nurse sounded increasingly frustrated with me.
“I know you think you’ve got this,” she said, “but you have a lot of new medications, plus chemo and dialysis.”
She lowered her Southern accent to a whisper, then leaned in and touched my arm. “We really didn’t think you were gonna make it,” she said. “We all thought we were just keeping you comfortable until you passed. Most people that come to our floor [of the hospital] don’t walk out of here.”
My eyes filled with tears and I threw my arms around her neck to hug her. Nevertheless, I was determined to leave that hospital and get back to normal life. Unfortunately, I should’ve paid attention to her warning.
A giant ‘oops’
When I left the hospital, I had to make an exhausting trip to Walmart to pick up 14 medications. I could barely walk from the car to the pharmacy and don’t even know how I made it home.
I dumped the bag of medications onto my bed. It was wild to see. “Crap, what meds did I take this morning at the hospital?” I wondered. “What meds do I take now, and then tonight?”
I was completely overwhelmed. I’d spent the last five weeks having nurses bring me drugs like clockwork. They’d scan my bracelet and hand me a cup of medications. I didn’t have that at home. Also, I had to be back at the hospital at 6 a.m. the next morning to wait for dialysis.
My brain was foggy and exhausted. I had a hard time focusing. With my cognitive abilities affected, I didn’t have the forethought to have a full day’s worth of medications on me at all times. I took my morning meds before I went to the hospital, but I didn’t anticipate being stuck there for 13 hours. I had no medications with me.
By the time I got home 16 hours later, I’d missed taking nine of my 14 medications. I was dizzy and shaking, my head was throbbing, I felt weak, and I was losing vision in my left eye from the headache. My ankles were swollen to the size of my thighs.
I’d missed so many meds, and I wasn’t sure if I should take them later. My dizziness got worse by the minute. By the time I made it to the kitchen for a drink, I felt my scope of vision shrinking. I recognized the feeling: I was about to black out.
The next morning, I woke up on the floor with a blinding pain in my side and a splitting headache. I ended up back in the ICU with a punctured liver and a hematoma that filled half of my torso, due to falling onto the floor when I blacked out.
Unfortunately, my nurse had been right: I should’ve stayed in the hospital. I was completely unprepared to manage so many medications. I spent additional weeks in the hospital while my hematoma stabilized and a scheduled dialysis chair was arranged.
Managing medications is a huge part of daily life for patients with a rare disease. I underestimated this part of my care routine and it almost cost me my life — again. Today, I’m happy to report that I’m taking only seven medications, which is much more manageable.
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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Comments
Bonnie Corley
Good article and so accurate. I was fortunate to have a doting caretaker when I was released from 63 days in ICU. I could barely function even with my husband’s help.