Hypogammaglobinemia a look at what it means

This post is not for the squeamish. This is a real look at what I do every week to keep myself healthy. If this would be disturbing to you, please do not look at this post.

Okay, now that the disclaimer is out, I will now speak. I have been doing this infusions for about 4 months now. Doesn’t seem like that long, almost seems longer but I still have yet to get sick and we are venturing out more (though always with a mask unless we are eating or cycling).

This first image is showing my set up. It looks like a lot right? I have a mat that I put everything out on. I have been doing this on my bed so there is a small bed table under it. I have good light in my bedroom so that helps with all of this. Not to mention this is a lot of stuff. Not many places in my house have room for all of this! Anyway, on top of the mat is alcohol wipes (5), spike transfer needles (2), paper tape (roll), Tagaderm (1 if needed), needle set, regulator, gloves (2), 50 ml syringe, medication (2 vials), my pump is that big long thing by the pink box, sharps container, paper towels, and brown paper lunch bag (not pictured – for garbage). I keep all of my supplies in the pink box. The green box inside the pink box is for my medication. I am sent 4 weeks at a time (8 vials). I also have a log book that I need to keep all of my records in. I mark where I did my infusions, what medications other then the infusion I took during the week, and how I felt during the week. I have never EVER taken anything where they were as concerned about my comfort as this product! It is really amazing. Oh and you can’t really see it, but I have an epi pen in my box. This is just in case I have an allergic reaction to this medication. I guess that could happen at any time. Yikes!

As you can see, this photo is showing me a bit further in the process. I have put the medication into the syringe and I have primed my needles. This medication (unlike many others that I have experienced) wants you to have a “dry needle”. So there is a bit of air in the tube before the needle. The reason for this is because this product is in a bit of acid. The acid makes room for the medication when it is being administered. This sounds like it would be horribly painful but it really isn’t. There must be a pain killer in there as well, though I do take 2 Tylenol and a Clariton before I start my treatment. I can say that the few times I have touched my medication with my skin, it didn’t feel great but wasn’t awful. That is why I typically wear gloves till I get to this point when handling it. The round knob on my tubing controls the flow of the medication. The pump is just spring action. It pushes the medication at a constant pressure and the round knob is the regulator that controls that flow. I do mine at a fairly slow rate. I am told that the slower the better but not everyone wants to wait 2 hours (potentially) for this process. I don’t mind that. I also have 3 sites that I use. I could use 2 but started with 3 and I don’t like rocking the boat. The white ovals by the pump are the Tagaderm that come with my needle sets. The needles go in at a 90 degree angle and so they are taped onto me while the infusion is happening. There is only adhesive on the outside of the oval. The middle is not sticky. So removal isn’t bad. Just in case though, I do have adhesive remover if I need it. I do have another type of needle that actually has adhesive at the spot of the needle. Those I need the adhesive remover for, however I prefer the needles that are in this photo. For those of you that are curious, they are 26 gauge, 9 mm needles.

This is showing the needles in. They need to be 2 inches apart. I also try to have them the same distance from the previous week’s spot. I can infuse in a few spots, but I prefer my belly. It is the easiest to get to and doesn’t get in my way when I have by pockets for a few days after the infusion. I mark my infusion sites when I take the needles out, so I can remember exactly where I infused for the following week. A Bic pen works best for this, though I am experimenting with other marking devices. As you can see, I use paper tape to keep things organized and contained. This week I even taped the tubes to myself.

While the infusion is going on, I am typically relaxing, or doing light things. I can sew, I can walk around. I can probably go for a walk but I would need to bring my epi pen. I have hung laundry, and fed an infant. I will not drive for obvious reasons. Anyway, this is what things look like when I am done. I typically tape some caps for my tubing to my syringe. This is so the part that can be thrown away, is capped, and the part that goes into the sharps container is capped. I have tape for each of my sites ready as well as a bandaid. I also keep a 2 by 2 medical sponge ready. I don’t use the 2 by 2 that often but every now and then I will bleed and this helps to control that if needed. The needles come out and then the 2 butterfly wings Velcro over the needle. This works well but I have had them separate when I was putting them in the sharps container and the needle poked me. So now I tape over that to make it extra secure. My final step is to use a cleaning wipe to clean my pump and put it in it’s case in my pink box. The case for my pump is ugly and grey. I will likely make one that is more colorful and vibrant (like me!) but have yet to do so. I was looking at it today (infusion day is Tuesday) and it seems very easy to remake for my purpose in a more cheery fabric.

Anyway, that is what this whole process looks like for me. It sounds FAR worse then it actually is, and trust me it is WAY better then being sick all the time! Please let me know if you have any questions about it!