This week, we will consult with the surgeon who will have placed and removed six of my son’s seven port-a-caths. There will not be an eighth foreign object in “MacDonald the Younger’s” body, as it will not see port number eight. His treatment does not require access, and at 13, his veins are much easier to find. Daily infusions have left the building as my boy’s regimen has changed drastically throughout the last six months.
Life changes and the advancements of innovative ways to treat chronic illnesses are no exception. While we enjoy a quality of life that we couldn’t ever imagine, there is still fear that such a drastic switch in treatment can radically alter our lifestyle. Our new medical plan allows us freedom beyond our wildest dreams. Yes, ways to help improve the quality of life of our loved ones are great, but I can’t help wondering, “How do we live without daily doses of product? Are we just as afraid of positive change as we are negative?”
To those with chronic illnesses, chaos sometimes overtakes the mundane and so we grasp for anything that we can call a “normal” schedule. But what if the word “normal” requires change? What we called ordinary when my first son was 13 years old meant something completely different than it does today. Ten years ago, our prophylactic routine was vein access three times a week. Now, we are injecting our product once every two weeks. This very different way of living requires looking at treatment in a completely different way.
While my family is glad to have the daily medical stuff behind us, we still look back at how our lives changed in what appeared to be the twinkling of an eye. We hold fast to the events that made us closer and stronger. We focused so hard on treating my two boys’ bleeding disorders that life without a sharp concentration on hemophilia left us wondering how to communicate in the future. What is life after we no longer require tons of product doses? New ways of approaching medical care are some of the concerns that we’ve faced.
My family continues to embrace our new “normal.” We rediscover passions, explore new adventures, and find hope in our continually evolving “normal.” Change is scary. We can run from new ways of doing things or we can fearlessly allow ourselves to embrace innovative ways of living in the world. We take the first step toward the future and hope the suffering that many of us endured prepares us for the joy of the next chapter in our journey.
And so, we say goodbye to port number seven. No more daily infusions with 1-inch needles, nor will we have large amounts of the medical product stealing precious space in our refrigerator. We prepare ourselves for life without Jim Bob (the name of port number seven). For over two years, we did not have infections or any other complications. We say goodbye because it is time for us to embrace new beginnings.
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 Services, and are intended to spark discussion about issues pertaining to hemophilia.