infusion center

A Dozen



No more pole dancing - this is my new IV pump. Pump on the left, Lumizyme on the right. It zips up and I can carry it on my shoulder.

Today I had my 12th infusion, my second at the new infusion center. I took a new route today which made the journey so much easier. I did have to hand over $4 in toll fees each way which irks me. I just really despise toll roads.

Again, everyone was really nice. They even made sure the snack drawer had low-carb snacks in it that I could enjoy. A new addition to the infusion suite was a mini fridge stocked with juice, soda, and water. And I think they finally got the thermostat under control as the temperature was consistently comfortable.

I went prepared with my own “tape” which is really called athletic wrap. It is wonderful for infusions, it sticks to itself and not my skin. My nurse said she would request some for my next visit -she really likes that stuff too.

Magic tape for magic meds day. And it's purple - bonus!

The infusion went well, no reaction and once again I feel great. I’m always so energized on infusion days. That Lumizyme is good stuff! I start feeling run down about four days before I’m due another dose, and I often get pain flare ups in my legs. They are nowhere near as bad as they used to be and don’t last as long. Usually one Aleve will calm the pain, at least enough so that I can sleep. I had to take one last night and one two nights ago. A huge improvement from where I was for, well – most of 2009.
I only hit one small snag this time around. For some reason one of the managers wouldn’t let the pharmacist start mixing the Lumizyme until my IV was in. I’ve always been able to call ahead, about an hour before my appointment, to let them know I’m on my way and they would have it ready when I arrived. Hopefully we can get this glitch worked out, otherwise I’m just sitting in the chair for about an hour while they mix my cocktail.
Still going well and still fighting!


The Suite Life

On Monday, I received my Lumizyme infusion at the new site Genzyme arranged in Orlando. This site is technically closer to where I am than the University of Florida, but the drive there is much more unpleasant. Going to UF was super easy as most of the trip I could set the cruise control. The new, closer, site involved traffic and about a million stop lights. The drive to UF is about 2 hours of easy highway driving and it took me an hour and 15 minutes to get to the new site. I’m going to try a different route next time and see if I can make the drive easier and faster, unfortunately this will involve having to take dreaded toll roads – which I despise. I especially dislike the idea of having to pay a toll to simply go across town.
The infusion suite itself is nice, really nice. It is private and has a very comfy chair and a TV with a DVD player. The people who work there are very nice and the best part… the nurse got my IV on the first try! This particular facility does a lot of home health care, so if down the line it becomes possible to receive my Lumizyme infusions at home I will probably be able to continue working with them thus saving me another transition to a new infusion team. Steve, my local Genzyme guy, is looking into when and if that will be allowed with Lumizyme. Currently, patients in other countries are able to have home infusions and Myozyme users in the US have been told that after a year, they can receive home infusions – barring any complications of course. With Lumizyme having only received FDA approval in May of this year, it might not be as “easy” to switch to home infusions after just one year of treatment – time will tell.

So for now, I will continue to travel to the new Orlando site – hopefully the drive will improve. If not, I’m setting the cruise control and heading back to the Home of the Gators!

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.