Learning how to infuse factor gave my family freedom, part 1
The journey to managing our oldest son's treatment independently
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First in a series.
When our sons were babies, my wife and I depended on our home-care company to infuse them with a clotting agent to combat the internal bleeding caused by their hemophilia. Infusions require a steady hand to hold the needle, insert it into a vein, and gently push the medicine in.
While the company we used was excellent, we were limited in when and where our sons could receive their treatment. Plus, it often took more than one stick to find a vein, leading to tears and pain. The boys had small veins that were difficult to find.
Our sons are 10 years apart, and each had unique experiences growing up. This included the transition from depending on home-care companies to depending on my wife and me for their care.
Julian, our oldest son, did not have the difficulties that his younger brother, Caeleb, did. My family is living proof that the way hemophilia rears its ugly head can vary greatly among patients. In our case, we learned quickly that there’s no “cookie-cutter” treatment that works for everyone. Each case is separate and depends on the individual.
Julian’s process
When Julian was a baby, we depended on a home-care nurse to infuse him with clotting factor. It hurt us to see him in pain, but this was our only choice. When our boy was a toddler, we discovered that he had a low-titer inhibitor. This meant that his body fought against his medicine at an alarming rate. The half-life of the factor product was nearly cut in half.
Our hemophilia treatment center (HTC) suggested placing a port-a-cath under his skin to make it easier to infuse the factor product. Our medical team said the best way to treat Julian was to overwhelm his inhibitor by administering larger doses of the product. At first, we didn’t know what to think of this idea, so we consulted our doctor and a few friends in the bleeding disorders community to help us make an informed decision. Ultimately, we agreed with the HTC, and when Julian was 2, he received a port-a-cath. It was a quick surgical procedure that took about an hour.
The medical team taught my wife and me how to infuse factor through the port-a-cath. They stressed the importance of maintaining sterile technique and looking for signs of infection. When we left the hospital with our son, we did not feel confident in our ability to perform the process on our own. We called our home-care company and asked a nurse to watch us infuse our boy, just in case we needed support.
After a few infusions, our training paid off: We felt comfortable doing it on our own. This empowered us to manage our son’s care confidently and independently.
Under our HTC’s guidance, Julian’s inhibitor resolved within two years. After treating him daily, we moved to a prophylactic regimen of three infusions per week. This helped to prevent spontaneous internal bleeding episodes, thereby saving his joints from lifelong damage. Our family moved forward, grateful that we had learned two things: that we had what it took to do the job, and that focusing on Julian’s health only strengthened our family bond.
When Julian grew older and learned to infuse himself, my wife and I enjoyed the freedom of not needing to be nearby. Our lives changed for the better because my boy’s self-reliance opened the door to hope. Julian, his mom, and I experienced a liberation we’d never known.
While we were finally confident in our ability to treat Julian, we had no idea what would happen to our younger son.
Next week, I’ll share how Caeleb, my mighty warrior, faced issues that neither we nor the HTC could have imagined.
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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