Making Infusions Easier

Easy (well, easier) IVs


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. 

If you’re having trouble with getting “stuck,” before succumbing to “port pressure,” why not give Gatorade a try? Cheers!

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.

Hassle-Free Infusions (sorta)

After fearing I would pass out every time they put a new IV in, I am happy to report that my first three infusions have gone well and I have remained conscience each time. I have really small veins for an adult and they’ve even had trouble drawing blood at times. I was concerned when I found out I would need an IV infusion every two weeks for the rest of my life, especially because my most recent passing out experience happened at a blood draw just two weeks before my first infusion. I really didn’t want my little veins to be a problem that would prevent me from receiving enzyme replacement therapy or that I would be forced to have a porta-cath or PICC line.

But I think I have this whole IV thing mastered. First, good nurses are key! At the University of Florida, there are several expert “stickers” on staff. The infusion center is on the same floor as the Peds ward and the nurses there are used to tiny veins. They also have a nurse who they call in for those really tough cases, she is some sort of Vein Whisperer. Surprisingly by just taking a few easy preparatory steps they haven’t had to call in a Peds nurse (except for that first blood draw) or the Vein Whisperer for me.

Hydrate – I make sure that I’m very hydrated before arriving for my infusions, I drink plenty of water. If Gatorade didn’t have so much sugar in it, you can bet I’d be chugging that instead.

Warm – I try to keep my hands and arms warm and ask for a heating pack when I arrive at the infusion center.

Distract – When the nurse arrives to do the actual “stick” I make sure to ignore her. No, this is not rude, it actually makes her job easier because if I’m not focused on the IV going in, my muscles are relaxed and she has an easier time of it. I’ll talk to someone, read, play with my iPod – anything.

By following these simple steps I’ve turned my infusion appointments into hassle free sessions – well as much as one could hope for sitting in an infusion center for hours and hours every two weeks!

I am not completely out of the woods with the whole infusion thing just yet. My next infusion is number 4 and Dr. Byrne said that an adverse reaction, if it was going to happen, would show at the third or fourth infusion. I’m not going to worry too much about it as 1. There is nothing I can do about it and, 2. The other infusions have gone so well, the chances of me having a reaction at this point are pretty low.

I am however experiencing some sort of allergic reaction to something. I’m getting mild dry patches on my face and in my scalp. The doctors are not sure if it is a reaction to the Myozyme or if it is just a regular run-of-the-mill allergy to the pollen in the air. Florida is having an unusually bad allergy season this year, and this is my first season here so I have nothing to compare it to. I’ve never had spring allergies before either, anywhere I’ve lived. The exception is one summer I was in Paris, France and there was something in the air that time of year that caused my eyes to swell up and itch. It was a text book case of hay fever – the only one I’ve had in my life. The reaction I’m having now is a little a different, yes my eyes will swell and get red, but the itching is minimal. I’m armed with eye drops and other allergy medications which give me some relief and honestly the dryness is not that uncomfortable – I just don’t like the way it looks even if I’m the only one who can see it. My study nurse wrote down that I was having some sort of allergic reaction – to something and we’ll just wait and see. If it is a reaction to the Myozyme, it is so mild that it won’t prevent me from receiving future treatments. Hopefully, whatever it is it will just run its course and go away soon.