Why I decided not to get an implanted port — for now
It's a personal decision based partly on personal comfort and treatment choices
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When I was younger, I knew what an implanted port was, but my understanding of it was limited. Then, in 2010, I received a phone call that would change my life. I was told that I had been diagnosed with a rare genetic disorder called Gaucher disease and I’d need IV treatment for the rest of my life.
I remember trying to process those words. For the rest of my life. That was a lot to take in.
My mind immediately filled with questions. What would my treatment look like? How would this change my life? Would I be able to live normally? And, perhaps one of the questions that scared me most at the time, would I need a port?
At that point, I had no idea just how much that question — and the journey that followed — would come to mean to me as I navigated Gaucher disease.
By the time I was 28 years old, I was no longer afraid of needles. As a child and teenager, I had endured years of blood tests and medical appointments. They started at a very young age because I never seemed to feel well, my blood counts were never “normal,” and my doctors spent years trying to piece together the puzzle of what was causing my symptoms.
After my diagnosis, however, needing lifelong IV infusions was something entirely different from the occasional blood draw. I had to accept that treatment would become a permanent part of my life.
My genetic doctor gave me detailed information about my treatment options — what medication I could take, where I could receive my infusions, and what my biweekly treatments would involve. We also discussed the option of having a port surgically placed to make accessing my veins easier during infusions.
At the time, I still considered myself young. I wasn’t afraid of needles, and I believed I could handle the difficult IV starts, the veins that refused to cooperate, the blown veins, and everything else that came with being stuck every two weeks. It was my choice to get a port or not, and at the time, it was really the only decision that I had control over.
I’ve been receiving IV infusions for more than 16 years now without a port. I decided to wait to have one placed. Some days, it feels like I’ve been doing infusions my entire life. I’m very grateful for my nurses who continue to access my veins with luck and ease.
Along with my IV infusions, I continue to have countless blood draws and routine lab work. For me, it’s not the stick that bothers me — it’s the comments from strangers, such as being told where they’re going to stick me, hearing remarks like, “Why don’t you have a port?” or watching someone continue to dig for a vein long after it’s clear that it’s no longer viable.
Leaving a clinic with blown veins and bruises is a familiar situation. The bruises hurt, but not being heard hurts more. It’s a constant reminder that I’ll always have to advocate for myself. I’m not speaking up to be a difficult patient, but it’s my body and I have to protect it as long as I can.
When you depend on access without a port, you become fiercely protective of your veins. They aren’t just veins anymore; they’re lifelines that need to be preserved. You learn to save the “good spots,” asking that certain veins be left alone unless absolutely necessary.
It hasn’t always been easy, and there have certainly been days when I’ve wondered if a port would make things simpler. But for now, I’ve chosen to wait.
Note: Gaucher Disease News 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 other 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 Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.
