When living with hemophilia, treatment isn’t always tidy

I wasn’t doing anything unusual when it happened. I wasn’t exercising, rushing around, or kicking someone. I was simply walking around my house when I felt a sudden, sharp pain in the ball of my foot.

Within seconds, it began to swell. A bruise appeared, purple, unmistakable, and completely uninvited.

For people living with hemophilia or other bleeding disorders, that moment is familiar. The absence of trauma doesn’t make it any less concerning. Spontaneous soft-tissue bleeds can occur without warning and rattle us precisely because there’s nothing obvious to blame. One minute, we might be fine, and the next, our bodies remind us that they still follow different rules.

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That’s the part that still catches people off guard. We crave causes. We want explanations. “What did you do?” is often the first question asked. But sometimes the honest answer is “nothing.” That unsettles people — not just clinicians and caregivers, but patients, too.

Foot bleeds are particularly disruptive. They don’t just hurt; they interfere with everything, including balance, walking, standing, and even sleep. Every step becomes a calculation. Every errand feels heavier. We become acutely aware of how much we rely on something most people never think about.

During the recent holidays, I still had shopping to finish, a professional hockey game to attend, and travel through major airports ahead of me. I knew I needed to buckle down and infuse my clotting factor — not just to get through the week, but to have any hope of preventing the bleed from sidelining me for months.

The math that nobody talks about

What followed wasn’t a single mistake, but a cascade of minor frustrations. I started by trying to find a vein in my hands, as I always do. The veins rolled and blew. Other veins refused to cooperate, and I missed. By the time I stopped to reassess, I’d already had five pokes.

Five attempts are usually the point where the mental math begins. It’s also when people sometimes ask why we don’t just stop and try again tomorrow. The answer is uncomfortable but real: A single dose of factor for both hemophilia B and von Willebrand disease costs more than $6,000. Once it’s prepared, there’s real pressure to get it in. Wasting it isn’t just financially unthinkable — it carries a weight that sits heavily in the back of the mind while I’m trying to stay calm and steady.

So, after five unsuccessful attempts, I paused, and my foot became the sixth. Feet are never a first choice. They’re lower on the hierarchy for good reason: fragile veins, more movement, and less forgiveness. But my foot needed treatment, and the factor was already mixed. Walking away didn’t feel like a responsible option.

I took a deep breath, inserted the needle, and finally saw a flash of blood return in the tubing — confirmation that I was in the vein. I slowly pushed the medicine in. The infusion itself was uneventful. The factor flowed smoothly, without resistance or pain. For most of the infusion, everything worked exactly as it should.

It wasn’t until the very end that the vein gave out, causing another bruise. This time, though, I celebrated the success.

The weight of independence

What surprised me most wasn’t the injury itself. It was how emotionally deflating the experience felt. There’s a quiet self-criticism that creeps in when something goes wrong after years of managing a condition. I should be better at this. But hemophilia doesn’t reward longevity. It demands adaptability — even on days when I’m already tired.

When I infuse at home, these decisions don’t come with a second opinion. I am the nurse, the patient, and the decision-maker all at once. Independence is empowering, but it also means carrying the full weight of judgment calls — especially when things don’t go perfectly. Veins age. Scar tissue builds. Bodies change. Women have smaller veins and less consistent training, and years of having symptoms minimized can make complications feel personal, even when they aren’t.

The good news is that my foot improved with astonishing speed, leaving no doubt that this had been a bleed.

Living with hemophilia means accepting that not every problem has a clear cause, and not every solution comes without consequences. Treatment works, but it isn’t always tidy.

Sometimes the bleed is spontaneous. Sometimes veins don’t cooperate and give out at the very end. And sometimes, even when we do everything right, a missed vein and the resulting bruising are simply part of the story.

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.