Look Ma, No Port!

Look Ma, No Port!

My son has his seventh port lodged on his left side, between two ribs, just below his chest. This one is his most successful port regarding the amount of time (two-plus years) and accessibility. When the doctor placed one of the earlier ports at “MacDonald the Younger’s” belt line, we found it very difficult to infuse. We finally convinced our hematologist to replace the complicated port with something more manageable.

Until a few months ago, the procedure required patience and steadiness. We needed to keep this “alien thing” in my son until it ceased to work. “Mr. Man” was doing well, he experienced no bleeding and no struggles with hemophilia. In short, life could not get any better; or so we thought.

My son had faced several complications with his chronic illness. Infusing once a day required sticking a 1-inch needle into my son’s port. Failure to observe daily dosing could result in a severe bleed, so our treatment became like clockwork.

At a national conference, we heard something about a new medication coming out that could change the way we treat inhibitors. I remember thinking to myself, “Oh that’s great.” I heard the announcer say, “Imagine what it would be like to treat one day per week with a subcutaneous injection.” I smiled, still thinking that he referred to something that might happen 30 or 40 years into the future.

One day, our hematologist called us and asked if we could meet her at the clinic. While feeling somewhat concerned, we agreed. I thought I couldn’t handle any more bad news when it came to my son’s care. What did the doc want to say? Surely, she didn’t think that “Mr. Man” needed a new port?

When we arrived, she gave us good news. “I think it is time to try a new therapy. How would you like to inject your medicine once per week?” She meant changing to the medication we’d heard about at the national meeting. The time is now. After giving us a few days to research the medicine, we agreed to start a new treatment. Our fears gave way to excitement as life changed in the MacDonald home.

Four months passed, and after experiencing no side effects, our doctor wanted us to visit one more time. She explained that since there are no adverse reactions to the medication, it is time to talk about removing the port. Fear swept over me. I thought to myself, “the new medicine is great and all, but what if something happens? We are being asked to give up a perfectly good port.” There is a risk with each surgery performed; add a bleeding disorder, and every risk magnifies. And why tempt fate?

I am thrilled that our doctor is so patient. It is time to take a leap of faith and do what we know is right. It is time to say farewell to port number seven. No port! Who would have thought it possible?

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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.

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Joe is the father of two sons with hemophilia. He and his wife Cazandra are active member in the bleeding disorders community and often facilitate workshops both locally and nationally. Joe is a pastor in the United Methodist Church and writes a blog about spirituality and faith. You may follow his blog at www.joekmac.com.

2 comments

  1. Claire Phillips says:

    Father God, as the family takes this leap of faith, keep them all, especially the younger MacDonald, in your loving care, safe from all harm. Amen.

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