Whoops, I forgot I’m living with hemophilia!
When I'm in the flow of an art project, I still need to remember my treatments
Sometimes I forget I have hemophilia. I know that sounds silly, particularly after years of struggle to obtain a diagnosis, yet it’s true. This forgetting is great when I’m healthy and have no issues. There are times, however, when it’s imperative that I remember I have hemophilia. Sometimes I fail miserably.
A recent week was one of those times.
I had a vision for a new art project! I was so excited to get started, as I knew it’d be long and tedious to create. It involves precise work gluing many small objects onto a 3D model. I sit outside on a picnic bench with a protective mask because the glue I’m using requires extra safety precautions. One weekend I spent two hours each day sitting and gluing.
The first day, my back muscles were a little sore as I worked. I wiggled a bit and tried to find different positions on the hard picnic bench, but I kept going. I was so excited about the art! My back felt better after I stopped, so I didn’t think more about it.
The next day, I glued for another two hours. I was excited to see the art project take shape and knew it’d be amazing. This day, though, my back was sore from the beginning. As I continued the tiny movements, the pain increased. I kept working. At the two-hour mark I had to stop because the pain was too much.
Delaying factor VIII infusion: A bad choice
Moving inside and doing other things helped ease the pain a bit. At midnight I discovered that I’d been so immersed in the art project that I’d forgotten it was an infusion day. Since I struggle with many bleeds, every 48 hours I take factor VIII, a protein I’m missing that helps blood clot and thus prevent injuries. Taking factor VIII preventively can also catch bleeds early and heal them — sometimes without my knowing they ever existed.
That night, though, I made a bad choice. As it was especially late and I was tired, I decided to delay my factor VIII infusion for a day. While it’s understandable that infusing my medicine into a vein is harder when I’m tired, I shouldn’t have missed a dose while my back was hurting.
By the next morning, that back was screaming at me. Walking was uncomfortable, and breathing caused discomfort. Clearly I’d been ignoring a muscle bleed in my back for days. It was either caused or exacerbated by the four hours of small, repetitive gluing, which taxed those muscles.
Giving myself the factor VIII I need to heal
I infused factor VIII that morning and spent most of the day lying with ice packs on my back. It wasn’t easy to have work meetings this way while balancing my laptop. While I noticed a slight improvement, I had to take an additional dose of factor VIII that evening. I have problems with factor having a short half-life in my body, meaning it’s cleared from my system faster than it should be. As a result, I have to dose more frequently than most people with hemophilia when I have an active bleed.
The next morning, my back felt a lot better. Four factor infusions over three days removed most pain. The mistake I’d made was ignoring my back for two days before I treated myself. Why did this happen? Simply put, I forgot I had hemophilia. Crazy, right?
Why do I forget? I was diagnosed when I was 45 years old. I spent years before learning to understand the bleeding patterns I’d been taught to ignore since childhood. When I was younger, in fact, I was told the pain was in my head. I learned to continue on in spite of my debilitating symptoms for months on end. I ignored them. That’s how I survived.
Today, I don’t have to suffer, but that means I have to consciously break old patterns. Whenever I start to feel pain, I need to acknowledge it and come up with a plan.
In the hemophilia world, we’re often taught, “When in doubt, treat!” I must keep this advice at the forefront of my mind. If I catch a bleed early, it’ll heal faster. Giving myself an extra dose of medication when I feel something coming on won’t hurt me. Delaying that dose, however, could have significant consequences.
I hope I do better next time.
Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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