While challenging, maintaining factor infusion routines is vital

Driving home from choir practice, I noticed that my pinky felt strange. It was really stiff, and I couldn’t bend it. When I rubbed the outside of my knuckle, it hurt a lot. By the time I arrived home, it was swelling and turning black and blue. I had no idea what could’ve caused this, but it was clear that I had a spreading bleed.

I retrieved my factor VIII (FVIII) from the fridge and prepared for an infusion because I have hemophilia A. I need to infuse the FVIII protein I’m missing to help my blood clot and stop the bleeding. Preparing everything and getting the FVIII into my bloodstream took about 10-15 minutes. I grabbed an ice pack, sat down, and turned on the TV to distract myself while the FVIII did its job. Two hours later, I began to notice a difference as some mobility returned to the joint. Thankfully, by the next morning, the bleed was almost resolved.

I’d become a bit overconfident after noticing that my annual bleed rate — the number of bleeds I experience each year, despite taking medication — had significantly decreased over the past six months. Many factors likely contributed to this lower rate, including losing over 30 pounds without adjusting my dosage and reducing my physical activity due to my current health situation.

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Excuses can have consequences

Instead of sticking to the routine that was working for me and that had led to fewer bleeds, I used my progress as an excuse to slack off. This wasn’t a good choice.

I recently took a short trip to another state, infusing the night before I left, and then flying back after one day. By the time I returned home, I had little infused factor left in my system to prevent bleeds.

Travel can be particularly demanding on my body, so I know I should always ensure my levels are higher before heading to the airport. It had been almost 48 hours since my last infusion when I jumped into an Uber to go home. After two flights and a transfer in a large airport, I arrived home with a calf bleed. The calf is one of my target muscles, but I believe the bleed was more likely due to the strain of all the walking in the airport, combined with an inadequate amount of FVIII in my system.

Although I’d like to say I learned my lesson that day, less than a week later, I attended church and then choir rehearsal, despite being at least 12 hours behind my scheduled FVIII dose. Again, I was leaving myself less protected than I needed to be.

Improvement is not permission to slack off

My pharmacokinetics — the measurement of how long FVIII stays in my body — have improved over the past two months. I know the medication remains active in my system longer, which has positively impacted my bleeding rates. So why isn’t this reinforcing my commitment to stay the course? I should continue strictly following my prophylaxis routine of infusing every 48 hours. My weight loss without a dose adjustment has shown me that slightly higher dosing for my weight is more effective in reducing bleeding.

Infusing medication into my veins every 48 hours can be exhausting. When the routine is working and there are no bleeds, it’s easy to delay dosing. This delay happens for various reasons, including forgetting until it’s midnight or feeling too tired to deal with it until the next morning. I know many in the community can relate to this.

I write this to remind all of us, myself included, that we must stay the course, perhaps even more so when we are tired and reluctant to follow through. I find that I’m more prone to accidents and, therefore, bleeds when I’m tired. The moments when we feel tempted to postpone dosing are often when we need protection the most. In those times, we must challenge ourselves to dig deep and find the energy to stick to our routine. This will take less time than managing a bleed caused by inadequate protection.

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.