They are most often used with cancer patients for chemotherapy treatments. The chemo is so strong it can cause tissue damage, so a port is the safest way to go. Lumizyme is basically a synthetic enzyme and will not cause tissue damage so inserting a new IV every two weeks is not a problem and a port is not utterly necessary, but it is an option for Pompe patients who have difficult veins or who just don’t want to be “stuck” every other week.
Having a port put in requires surgery and I don’t do well AT ALL under anesthesia. When the did my second muscle biopsy they surgeon decided for some reason to put me out – no one knows why he did this for a fairly simple (albeit, painful) procedure. I had so much trouble recovering from that, my pain and headaches got immediately worse following the surgery. My “theory” is that the surgery “angered” the Pompe. I can’t imagine going through all that again, which could set back the little progress I have made, just to avoid some needle sticks.
It is a personal decision, and everyone is different. Now, down the line I may change my mind as we never know what will happen, or what the future holds for Pompe patients. But for now, I will continue my role as a human pin cushion as the risks don‘t seem to outweigh the benefits for me.
If you have questions about having a port put in, talk to your doctor about the benefits and risks. Like I said, I’ve yet to meet a patient who doesn’t absolutely love having a port.