My First Treatment

Finally, on August 13, I got my first treatment. The main hangup was the insurance company wanted to do a full review of my file to make sure all I's were crossed and T's were dotted. I had received all the intro/educational material from CSL Behring and reviewed it all, so we knew as much was possible to know going in to it.

So on Thursday afternoon we drove off to El Paso.

The Vivaglobin is distributed through specialty pharmacies which conduct initial training, handle your refills and resupplies every four weeks, and are there to call if you have any questions and problems. The first infusion is done at their offices to train you and to monitor for any adverse reaction, and all went well. There was an initial shock of surprise due to a somewhat misleading scene in the DVD that I was sent. In that scene, a studly-looking buff dude loads one syringe with Vivaglobin and inserts one needle into his abdomen.

I was set up with a set of four needles.

It turns out that each infusion site (needle placement) can only hold 15-20 ml of fluid. My treatment requires 60 ml of fluid (my starting dose). Thus four injection sites. It was just a bit of a shock expecting one needle and being able to rotate placement and then being presented with four. I'm not needle-phobic, but you really get tired of this and I've only been doing it for four months.


Here's the procedural run-down:

1. Wash your hands!
2. Prepare a semi-sterile area (lay down a couple of sheets of paper towels).
3. Once the Vivaglobin bottles have warmed to room temperature, pop the tops and wipe them with alcohol wipes.
4. Inspect the bottles to make sure there are no contaminants or discolorations.
5. Mount a needle to the syringe. This needle is used only for drawing the VG into the syringe.
6. Draw 60 ml of air in to the syringe plus a little bit more.
7. Insert the needle into one of the bottles then inject air. The increased air pressure forces the VG into the syringe. Repeat until the bottle is empty, then repeat on all bottles until the syringe is fully loaded. The bottles are not disposed of yet: you have to pull little lot number stickers off them to put in your treatment journal.
8. Put the safety cap back on the needle, remove the needle from the syringe and put it in your sharps disposal container.
9. The pump that I use is called a Freedom 60. It will hold a 60 ml syringe, no larger. It's a mechanical pump driven by a wind-up clockwork; the speed of the infusion is set by a regulator piece. You now mount the regulator to the syringe.
10. Connect the infusion tubing set to the regulator. For a four-lead set, the line from the regulator goes in to a splitter. Two lines come out of the splitter, hence the name, those lines go in to splitters, so one becomes four. These four lines terminate in the needles that you insert in to your body. In my case, I'm using my abdomen.
11. Now you get to purge air out of the lines! The syringe probably has bubbles in it. I find the best technique is to hold the syringe top-up and press the plunger. It's not always easy to see the progress of the liquid through the lines, by having the bubbles go first, you can more easily see where the liquid is in the lines. You want to stop pressing when it is an inch or two from the needles.
12. The ends of the lines need a little bit of prep work. First, the needles themselves have tubes on them to protect the tip. It's to protect people from getting stuck by the needle, but also to protect the sharpness of the tip: the needles are designed for one insertion, then they get a little duller. If you have to relocate a needle after it's been inserted, it's not quite as sharp and is a little harder to do. The 9mm set has little wings and a plastic piece must be removed. While the piece is in place, it also helps to defend the needle.
13. Now comes the fun part. Take an alcohol wipe, clean a patch of skin, pinch an inch, and in goes the needle. This is where a second person helping you comes in handy as you need to apply either tape or a Tegraderm patch to hold the needle in. Repeat for as many needles as your setup involves.
14. Mount the syringe in the pump and turn it on: you're pretty much done. Write down the start time for your infusion journal, throw away all of the detritus, and find somewhere comfortable to sit and wait while the pump does its thing.

The video that I received from CSL shows people doing all sorts of things while they're infusing, and they even have this spiffy little shoulder-bag for them to carry their pump around. Well, as far as I'm concerned, forget it. Maybe some people can do one needle and maybe do lots of cool things while infusing, I don't think it's practical. Maybe it's just me as I always have four needles in me, I don't know.

For me, I sit down and either work on my laptop or watch TV. The chair that I use is really a bit too cushy, when I get up from it I hook my foot under our coffee table and use it for leverage. I'll go to the kitchen or the bathroom, but I'm not going to go driving: the thought of having a car accident while I have four needles in my abdomen doesn't bear thinking about.

Besides, the time requirement isn't that bad. It takes about 2 ½ hours to do an infusion, including setup and cleanup, not including the VG warming. The VG must be refrigerated until use and needs a couple of hours to come to room temperature. You don't want to force the bottles to room temperature, just let them sit. I get them out when I get up and start breakfast, by the time I've had breakfast and showered they're generally up to temperature.


It's sometimes difficult to tell exactly when your infusion is done, at least with my pump. It's very quiet running, so you need to keep an eye on the syringe. The problem is that the rubber of the plunger doesn't fit the bottom of the syringe perfectly, so it's hard to see. I'm sure I've left the needles in longer than I needed to on more than one occasion, but that's the way it is.


Disconnecting is also a bit of a procedure, and is also easier if you have someone to help you.

1. Turn off the pump, remove the syringe from it.
2. You first have to remove the Tegraderms or tape, which can be painful if you're as heavily forested as I. There's a trick to Tegraderms: lift up around where the tubing goes under the patch and pinch a bit. With your off-hand hold down on the needle piece, then pull and stretch the plastic. You're going to lose some hair, but it pulls it away from your hair in such a way that it doesn't hurt as much. Work your way around the bandage and then lift straight up. Remove the plastic of the Tegraderm and throw it away.
3. Use a pair of scissors and cut the tube just behind the plastic bit that holds the needle, put the needle in the sharps container.
4. The second person is to hold the scissors while you hold the line taut. They also get to stand by with an alcohol wipe in case you have any leaking of the VG or any blood. It's not uncommon to get a bit of blood, but it cleans off easily enough.
5. Once all the needles have been removed and properly disposed of, throw away the tubing and syringe; it can all go in the garbage. The sharps container is used until it's full, then your pharmacy will send you a new one. It comes in a shipping carton to return to the vendor for proper disposal since it's classed as biohazard medical waste.

And you're done. Until the next one. You can do all this solo, which I occasionally do, but it's a lot easier with a second person.


My pharmacy sends me a four week supply of Vivaglobin and the consumable supplies: syringes, needles, tubing sets. Occasionally boxes of alcohol wipes, or additional Tegraderms. Annually I will be sent a new pump and send them my old one for cleaning/refurb/recalibration. The four week cycle makes it easy for my immunologist to make alterations and see if we need to tweak anything. The insurance company approved treatment for six months, which is basically a review cycle. The condition, unless they find some genetic treatment at some point, is pretty much for the rest of my life, so it will be approved in the future. They're monitoring progress and making sure proper testing is being done, or at least that's my assumption.