Times of transition bring anxiety for those with bleeding disorders

As my sons prepare for their next chapters, they must keep hemophilia in mind

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by Joe MacDonald |

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My house is in a state of chaos. Julian, my oldest son, leaves for a summer job in the Appalachian Mountains of North Carolina on May 1, while Caeleb, my youngest son, graduates high school on May 18. My wife, Cazandra, and I feel the unspoken tension that both of our sons are experiencing as they prepare for their next chapters. While they move toward futures full of promise, there’s also a sense of uneasiness. While they know beyond a shadow of a doubt that they must continue their journeys, the transition fills both with anxiety.

While Julian and Caeleb are both taking steps forward, they’re going in different directions. Julian is ready to start his next job as a singer and performer, while Caeleb expresses excitement about starting college and has hopes of becoming a graphic designer.

One thing my sons share, no matter what, is a focus on managing their bleeding disorders. I tell both of them that they must inject their precious medicine, Hemlibra (emicizumab-KXWH), to keep them safe from internal bleeding episodes. While I can’t guarantee that all will go well, I do insist that treating their hemophilia improves their quality of life. I tell them, “To stay on the passageway to hopeful success, you must always pay attention to your medical needs. In short, listen to your bodies.”

Julian and Caeleb roll their eyes when they hear this familiar reminder. Since they could walk and talk, my wife and I have been asking the magic question: “How are you?” It has a different meaning for those in the bleeding disorders community. My sons don’t respond with the generic “fine,” but instead share an update on their pain, whether they’re hurting as a direct result of an internal bleed or feeling the aftermath of too many bleeding episodes into a joint.

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Same diagnosis, different experiences

Julian’s primary concern is having enough Hemlibra to last through the summer. If he can’t get enough medication shipped before he leaves, he’ll have to secure a mailing address in North Carolina where he can receive it. He knows that he needs his prophylactic dosage to protect him from any breakthrough bleeding episodes that might require him to miss work on the stage. My son understands that to prevent medical emergencies, he must remain proactive with his care. He must be his own advocate.

Caeleb’s concern is similar to Julian’s, but he has a greater awareness of the need for medication because he’s experienced more health concerns than Julian. While both boys have the same diagnosis of severe hemophilia A, or factor VIII deficiency, Caeleb has faced more obstacles. For several years, my youngest son endured frequent prolonged hospitalizations because of breakthrough bleeding episodes in his right knee and ankle. He knows he must pay attention to his target joints and understand how to treat them when something happens.

For a moment, my soul mourns for my sons. Life is stressful enough without having a medical issue to manage. I worry about their futures and how they might navigate the world with their limitations. Cazandra and I did everything we could to prepare them for their journeys; now it’s time for them to make decisions regarding their life adventures. Hopefully, my wife and I gave them a good compass they can use to find their way home.

With these major transitions coming for both Julian and Caeleb, I know that, eventually, their anxiety will give way to celebration. A new job, graduation, and other causes of joy will overcome the nervous rush of anticipation.

As that happens, I sit back and swap my caregiver’s hat for an advocate’s hat. Under my breath, I say, “Thank God for these amazing men who continue to remind me that the best thing that’s ever happened to me was becoming a father.”

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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