My husband is becoming skilled at self-administering factor infusions
Jared had to teach himself to self-infuse, which isn't always easy
It’s infusion day again! Pens, inks, and assorted notebooks leave our bedroom work desk to make room for a makeshift medical setup. Medicine vials, alcohol swabs, and needles take their place. For my husband, Jared, who lives with severe hemophilia B, this is more or less a monthly routine.
With the precision of a trained nurse or medical technologist, Jared pierces the delicate flesh on his hand with a butterfly needle. It slides in effortlessly. Bright red fluid flows back into the clear tubing attached to the hollow needle.
“Easy,” he mutters underneath his breath. I heave a sigh of relief as I watch over his shoulder. I take a strip of medical tape and secure the butterfly needle onto his skin.
“You can rest now,” Jared says to me. “I’ll let you know if I need help changing syringes.”
The lack of a discernible expression on his face is a paradoxical sign of triumph. One can only understand this by looking back at previous infusions. Because it wasn’t always this way.
A rocky road to mastering self-infusion
Jared was a late bloomer at self-infusion. Unlike many of the younger members of his hemophilia organization, who had the privilege of attending self-infusion workshops in their preteen years, Jared learned the skill in his mid-20s. Only when we decided to move out of the old family home and start a life of our own did he fully muster the courage to infuse independently.
There may have been many reasons for this. First, factor products are a relatively new development in our country, the Philippines. Jared’s first memories of hemophilia treatment involved fresh blood products. Jared was a teenager in the mid-2000s when he had his first dose of synthetic factor IX. Second, it’s unusual for medical procedures to be performed at home, so many families feel apprehension about the self-infusion process, let alone allowing their children to do it at a young age.
Jared’s journey to mastering the self-infusion procedure was by no means smooth sailing. During his first few tries, he became overwhelmed with emotion and almost succumbed to the anxiety. However, with the aid of therapy and his support system, he was able to push through it. He learned to listen to his body’s signals and slow down when things were too much. That way, he could regain his focus and try again when he felt ready.
Every infusion shows growth
As the months passed and he became more familiar with his body, infusions became quicker and less troublesome. He still occasionally hesitated, especially when infusing a large amount of factor. When that happened, he’d tell me he doesn’t want to waste factor if he misses a vein.
On rare occasions, the backflow of blood in the tube starts to clot if not immediately moved, clogging the factor delivery system. The only way to rectify this is to forcefully push the blood out, into a tissue wad. Inevitably, a tiny amount of factor gets dumped along with it. Considering the limited availability of clotting factor here, it’s definitely anxiety-inducing.
Then again, practice makes progress. Jared’s biggest struggle has been trying to direct his focus away from the outcome, and toward the process instead. He has found that the best outcome usually occurs when he doesn’t obsess about finishing the ordeal, but rather takes baby steps to better understand his body and the infusion process.
As I watch Jared more confidently manage his infusion routine, I fondly reminisce about our infusion journey over the past three years. From initial hesitation to hopeless frustration to clean execution, Jared has undoubtedly grown as a capable self-infuser, able to carry the burden of managing his disability.
Despite a rocky start, he’s faced his fears, listened to his body, and embraced the process with patience. Each infusion is another step forward and an opportunity for growth and resilience in the face of adversity. Jared’s journey reminds us that growth isn’t linear, and through setbacks and challenges, we find strength to persevere.
As Jared successfully conducts more infusions, it fills me with gratitude and hope for better, easier, and healthier days ahead.
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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Comments
Christopher Davis
Well done Jarred it was very good to read your story. The longer you do the more confident you become. I am a severe Haemopilia A and home infuse over 30 years.