Columns

Last week, I finally had a follow-up appointment after my hematologist had switched me back to Soliris (eculizumab) to treat my paroxysmal nocturnal hemoglobinuria (PNH). The checkup had been delayed multiple times both on my end and my doctor’s. There were scheduling issues, changed hospital rotations, and an…

You’ve been busy preparing for a doctor appointment that’s today. You have your notes from tracking symptoms, along with questions you want to ask. Maybe you’re a little anxious. You check in, wait, and then are brought into the examination room, where you discuss your medications and have…

Have you ever seen a movie or funny internet clip where someone is running on a treadmill, and to help motivate them, a fishing pole is placed in front of them with something they really want on the line? They extend their arms to grab the item, but the treadmill…

Ever since I was little, I was programmed to believe that chasing the American dream was my main goal in life. To pursue that goal, I believed I had to do well in school, attend college, get married, land a good job, have children, and live happily ever after. This…

Last weekend, I attended a first birthday party for my friend’s son. During the week leading up to the party, I wasn’t feeling my best, as I was struggling with severe fatigue and headaches. I could hear my body telling me to rest and take it easy. My invisible…

What are your go-to phrases for encouraging someone who’s going through a tough time? Do you sympathize with their situation and say you’re sorry, even though you haven’t had a hand in what’s happening? Do you hit them with the empowering “You’ve got this!”? Or last but not least,…

My husband, John, and I recently started bowling with friends, and we’ve been enjoying it. Time seems to slow down when you walk up to the lane, take a deep breath, and line yourself up with the pins. As you step forward and lower the ball in a backward motion,…

Have you ever paused during an appointment because your doctor used a term you didn’t understand? When it happened to me, it was like time had stopped. I was no longer listening to my doctor; instead, my mind filled with questions as I tried to figure out what the term…

Note: This column describes the author’s own experiences with Soliris (eculizumab) and Ultomiris (ravulizumab-cwvz). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Time seemed to slow down as I entered my infusion center last week. I’ve gotten into…

Does the battle with paroxysmal nocturnal hemoglobinuria (PNH) get any easier? This is a question I asked myself at the start of my journey. The finality of the words “you have been diagnosed with PNH” made me feel like everything I’d ever known or desired was ending or…