My First SubQ Treatment (Lots of details of what's involved)

My nurse arrived right about 2:00, and she brought another nurse with her for training. They had me sign consent forms, then double-checked the list of medications I'm allergic to. Then we went through the box of supplies and checked everything against the itemized receipt that came with my supplies, and she showed me some of the features of the things that were sent to me.

Once the paperwork was done, she had me wash thoroughly, and use a paper towel to dry my hands then turn the water off with the towel to keep my hands sanitary. We had set out the antibacterial hand sanitizer for "touch ups" in case I re-contaminated myself before finishing (I did...many times). We went through the box and selected everything that I would need for my treatment and laid them out where they were handy. Accredo sent me a thing that looks like a big bandage (it's about 5"x8" a flat package), but it was a sanitary paper to put down for a work surface. When it was laid out, it spread to about 18"x 24", and was really handy to have...I think they sent me 5 (1 for each treatment for the month, and 1 extra).

Prepping the infusion Sites...
I then took a dollop of the Lidocaine cream and pressed it onto the places where I wanted the needles to go, and pressed a Latex-free bandaid over each dollop of cream. I had to select 5 sites because the supply company had mistakenly sent me "hookups" (don't know what to call them) for 3 needle sites when I needed to have 4. I really appreciated my nurse because she refused to do the treatment with 3 needles, and called to straighten everything out and try to find a solution. I didn't understand the ramifications of using 3 needles, or why we couldn't just use 4, but they explained to me that the more needles you use, the slower the infusion rate. My doctor had ordered an infusion rate of 15ml/hr, and since my treatment is 60ml, that meant I needed 4 needles (because 60/4=15). They couldn't use 2 of the hookups at one time because the ends of the hookups have the needles, and they branch from a single tube. There was nothing in the box to allow for a Y-connection of the tubes. My nurse spent a lot of time on the phone until she and her boss (and the other nurse) all came up with the idea of giving me 2/3 of the treatment with 3 needles, then the rest with 2 needles.

Filling the Vials with Hizentra...
I'd chosen 4 treatment sites on my belly and 1 on my back in an area where I could still see by twisting. The nurse had me take a Benadryl about the same time as when I put the cream on, and then we began preparing the medication and pump. I first popped the cap off of the tops of the Hizentra vials and swabbed the membrane across the opening with an alcohol pad. The next step required me to remove the huge syringes from their sterile packaging and screw the large needles on to them (these are only for getting the Hizentra into the syringe...the needles don't go in your body). They had me save the needle cap to make removal of the needle more sanitary and safe later. Each vial contains 20ml of Hizentra, so the nurse had me pull back the plunger on the syringe until there was 20ml of air in it (Because the vials are vacuum-sealed, you have to pump as much air into them as the amount of medication you want to take out.) I am small and not very strong physically, so I found it a real challenge to even pull the plunger out on the syringe; the next phase was even more challenging.

Here's a link to a good deal on generic Benadryl (diphenhydramine):



The needle goes into the vial easily enough, but putting air into it and holding everything such that you don't contaminate a sterile surface will take some practice for me to master. The nurse had me turn the vial and syringe upside-down such that the plunger of the syringe was resting on the sterile surface and my left hand was holding the vial and needle end of the syringe such that I could see into the vial. With my right hand I pushed down on the shaft of the syringe and forced air into the vial until the resistance was so great that I couldn't push anymore. I would then ease up on the plunger and allow medication to pour into the syringe. Allowing medication out would let me push more air in, and so I repeated the process until I'd gotten all of the medication out of the vial. I repeated the process with the next vial until I had all of the medication that I needed in the syringe. I then replaced the cap over the needle and removed it from the syringe. The company had provided a sharps container for me to discard it in.

Connecting the Tubes...
I then connected the tubing. There's a small piece of tubing with a number on it like 1200 and 600 that determines the infusion rate (in addition to the number of sites). I forget now which is which, but one of them allows for a faster infusion rate. We chose the one for a slower rate, and  removed the sanitary caps from each end of the tubing and screwed it onto the end of the syringe. to the other end of that tubing I attached the 3-needle tubing. The 3-needle tubing kind of looks like a tree in that there are 3 tubes each with a needle at one end, and they all branch from a single tube. I was then ready to put the needles in.

Putting the Needles In...
If you're squeamish about needles and reading just for the sake of interest, you might want to skip this part...

The nurse had me remove the bandaids and wipe off the Lidocaine cream with a paper towel, then swab the area in a circular motion with an alcohol pad. I left the bandaids over the other sites until I was ready to put needles into them to allow them to get as numb as possible. While the alcohol was still drying I laid out the clear film covers (Tegaderm, by 3M) for each needle site, and peeled the protective layer off of the adhesive--these covers hold the needles in place so I can move around while having the infusion. The nurse had me pinch about an inch of the numbed skin between the fingers of my left hand, and spreading the butterfly flaps back with my right hand I stuck the tiny needle (it's only 4 ml long) straight into the middle of the pinched area. Thanks to the Lidocaine cream, I didn't feel it at all! I then covered the needle sites with a thin adhesive film that the supply company sent me. Finally, I had to make sure that I hadn't put the needle into a blood vessel because the drug is not yet FDA approved for intravenous treatment, so I pulled back slightly on the plunger and ensured that no blood appeared in the line. I repeated this entire process for each of the other sites, then prepared the pump.

Me with needles in. The tubes go to the syringe in the pump.

Starting the Pump...
The pump is a mechanical device, not battery operated. there is a large knob on one side to wind it up, and an On/Off switch. It comes with a black canvas bag to carry it in. The bag is pretty cool because it has a window  where you can see the syringe to monitor the progress of the infusion, and a convertible strap to make carrying it easier. The plunger end of the syringe fits towards the back of the pump (under the clear plastic cover), while the end connected to the tubing fits into a little ring at the front (see picture below).

Infusion pump. The big knob winds it up, the little one turns it on and off. The clear plastic covers most of the syringe plunger during the infusion.

Before putting the syringe it's necessary to wind it up first by turning the big knob clockwise. It's a close fit to put the syringe into the pump. You have to angle the plunger end under the plastic cover such that the numbered side faces up for easy readability. Then you have to push back on that as you push down to lock the tubing end into the circular holder (the lip at the end near the big knob). After it's in place, switch it on. It makes a really loud, obnoxious noise at first until the little black thing that pushes on the plunger reaches the plunger handle. As soon as it reaches the plunger handle, it's absolutely silent and remains so until the end of the infusion. My nurse said that the pump exerts a force of about 14 psi on the plunger...which is about the same as normal atmospheric pressure, so I think (if I remember my chemistry correctly) it should be about the same as getting a gravitational IV. I'm not positive about that though...feel free to let me know if you know more about this. :)

The Infusion and Wrapping it Up...
The infusion lasted about 2.5 hours for the 60ml treatment (I had to repeat all of the above steps to finish mine, but this was an unusual situation). During the infusion I had some mild discomfort at the injection sites, but no itching. Once it was over, I prepared bandaids, peeled the adhesive film off of the needles, and pulled them out one-by-one. With some of the needles I inadvertently dragged them across my skin as I pulled them out, leaving scratches that started bleeding. At first I didn't realize what had caused the scratches, but then I realized I wasn't pulling them straight out. Once I realized the problem, I was able to stop it from happening. I covered each infusion site with a bandaid. After removing each needle, I cut the tubing near the needle and discarded the needle end in the sharps container, and threw the tubing and syringe away.

Post-Infusion Observations...
Each infusion site had a hard knot about 3 inches in diameter around the needle entry point and those sites felt tender to the touch. My belly was bloated to the point that I look pregnant, and I had a lot of gas. I didn't realize it was from the infusion until I was talking with a friend from my support group who told me that she was experiencing the same thing. Later in the evening I started having some shortness of breath and my chest was tight. I measured my peak flow, and found it was lower than normal, so I took my inhaler, which helped. The heating pad helped with the soreness of my belly.





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