When I was ill, I learned that factor infusion waits for nobody

When my oldest son, Julian, was 5, our paths crossed in the medical world. My wife, Cazandra, was out of town, and my boy and I were holding down the fort at home. Julian had hemophilia with a low-titer inhibitor and thus needed to infuse factor VIII every day. Our medical team hoped that overwhelming his system with a clotting product would successfully remove the inhibitor.

I understood an inhibitor to be like a crude form of Ms. Pac-Man. As soon as factor VIII entered my son’s system, little ghosts started chewing it up and rendering it useless to protect him from breakthrough internal bleeding episodes. Since Julian’s issue was a low-titer inhibitor, the chances of treating it proved more manageable than if he’d had a high-titer inhibitor. Still, until the problem was resolved, we kept a regimented schedule of infusing.

The good news during this period was that Julian had a port-a-cath, which made it easier to provide the daily factor VIII. Julian showed no signs of struggle; he sat up straight, let me infuse, and then went off to school. We had a good schedule for our family, and our morning routine worked to our advantage. We also maintained a sterile technique to ensure that his port stayed infection-free.

One day, Cazandra had to leave for an out-of-town business meeting. We reviewed our schedules, and I confidently sent her on her way to be a part of the great big business world. After infusing Julian, I walked him to his bus stop, hugged him, and told him I loved him. I dressed for work and thought the day had started well, with everything according to plan. Hooray, me.

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By midday, my throat started to feel scratchy. I brushed it off, thinking it would pass. By the end of the day, though, I felt awful. I asked my mother to pick up Julian while I saw my doctor. He confirmed that I had bronchitis and an ear infection, prescribed an antibiotic, and sent me home to recover. My mother met me there with Julian and stayed with us to help prepare a meal.

I still didn’t feel well the next morning, but I woke up Julian to start his day. As he sat at the kitchen table to eat breakfast and receive his daily dose of factor VIII, I thought, “Oh, no. I must use a sterile technique, with gloves on my hands and a mask covering my nose and mouth.” I didn’t want to risk my son getting an infection in his port-a-cath.

If Cazandra were home, I would’ve handed her the reins as I lay back down to find relief from the pain I felt in my left ear and throat. Unfortunately, Julian’s treatment couldn’t take a day off. Failure to equip him with factor VIII could prove dangerous, leaving him vulnerable to internal bleeding episodes. His medicine wasn’t a luxury, but necessary to keep him healthy.

During the time I was sick, I infused Julian at least three more times, each time remembering to make sure all his medical supplies remained on sterile paper. I took great care to make sure that my son didn’t catch any of my germs and risk endangering the life of his port-a-cath. My son sat up, handled his infusions like a champ, and boarded his bus to school.

As I recovered, I felt blessed that despite my medical issues, Julian continued his daily life. He had no complications because of my struggles and continued to infuse daily for another two years. Finally, the inhibitor went away — as doctors had hoped — and we resumed a regular prophylactic routine of three infusions per week. All seemed right in the world.

Through my illness, though, I’d realized something about hemophilia. It didn’t care one bit about how we felt or whether we had an illness. It demanded that we pay it attention, or else. It could care less about my needs. It required that all eyes focus on it, or my son might’ve suffered a terrible complication. It left us no other choice but to bend to its will.

After I’d employed my sterile procedures for days, Cazandra came home just as my own medicines started working on me. I felt better, Julian was grateful, and his awesome mom returned from her travels. My son is now 28 years old and takes care of his own medical issues, but I can’t help remembering the times when he depended on his mom and me for assistance.

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.