Preparing for Christmas and for Complications of Hemophilia
Advent season reminds me of how I get ready to care for chronic disease
In the Christian tradition, the season of Advent occurs for the four weeks leading to Christmas. Through the time leading up to the birth of Christ, we take a fearless moral inventory and address the issues that keep us from experiencing hope and contentment. I often equate Advent as a time to do the necessary housecleaning to prepare for the arrival of a special guest. The goal is to sweep the soul’s floors and eliminate the mind’s clutter. By paying attention to the details of preparing ourselves, we can welcome the gift of the Christ child into our lives with pure joy.
As I started down the path of preparation during this Advent season, I couldn’t help but notice the similarities between getting ready for the holiday season and what we must do as caretakers.
To prepare for the times when one of my sons may have an internal bleed, I must call my pharmacy to ensure I have enough product to treat it. Advanced medical arrangements prove crucial when an emergency occurs. The faster we treat a bleed from hemophilia, the quicker each son recovers from unexpected issues.
Another task we must accomplish is maintaining contact with the Ted R. Montoya Hemophilia Program and Treatment Center. By taking my youngest son in for six-month checkups, I communicate with his medical team, including his lead hematologist, Dr. Shirley Abraham, and the nurses associated with his care. We review his treatment road map and make adjustments to medicine as needed.
Together, the family and treatment personnel discuss issues that may require extra attention. We must receive the most up-to-date information regarding hemophilia treatment from my son’s highly qualified medical team.
In addition to my son’s hematologist, we read articles about hemophilia care from leading organizations. The two leading associations related to the care of bleeding disorders are the National Hemophilia Foundation and the Hemophilia Federation of America. Both groups provide valuable resources for families living with chronic bleeding conditions.
In addition to information, they offer yearly conferences that provide opportunities to meet leading experts in the field and other families who struggle with the same issues as we do in the MacDonald house. I’ve met some of my best friends through the yearly gatherings and other special events hosted by the two associations.
Another important way to grow my understanding of the issues we face in the bleeding disorders community is to get involved with my hemophilia foundation chapter. In New Mexico, I’m an active member of the Sangre de Oro chapter of the National Hemophilia Foundation. I serve as vice president and find joy in service to my community. We share a strong bond with one primary goal: to raise the quality of life for those with chronic bleeding disorders. Our team is mighty, and we vigorously fight for those who struggle in our community.
I hope that, in the MacDonald home, we treat the Advent season of chronic illness in a way that prepares us for the coming of unexpected issues related to hemophilia treatment. While we don’t get ready for something that’s like the joy of Christmas, we hope to improve our loved ones’ lives because we’ve studied and braced ourselves for unexpected medical issues. I hope that our preparedness eventually leads to joy. Then, we’ll step forward in readiness, convinced that wounds heal faster and we can resume the excitement of a beautiful holiday season.
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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