Needing an IV infusion every two weeks for life makes the subject of IVs and ports constant chatter in the Pompe world. Like most debates there are those for and against ports. On infusion days many of my Pompe friends brag about a “one stick” day or vent frustration over a “3 or more sticks” day. No one likes getting stuck with a needle, especially over and over again, which is often when the port verses no port debate arises. I come down strongly on the “no port” side as I’ve already had enough slice and dice done on my body for this blasted disease and I really don’t mind the needles – as long as I don’t have to watch. I do everything I can to prepare my body for a “one stick” day.
The best thing anyone can do is to stay hydrated, which includes not only drinking loads of water, but avoiding alcohol and caffeine. Recently I’ve started incorporating Low Calorie Gatorade into my pre-infusion ritual. I use low calorie because it contains less carbohydrates and sugar – which in my head equals less glycogen build up. I drink at least two servings the night before my infusion and two more servings the morning of. It seems to help reduce the amount of sticks because along with the electrolytes for hydration, Gatorade is loaded with sodium which helps plump up the veins.