IVIG Infusions – Everything No One Else Will Tell You!

When I mention IVIG infusions most people are truly interested in what they are, why I need them and how they make me feel.

However, some well-meaning folks go all “deer-in-the-headlights” on me when I launch into the most simplified description I can of CVID and IVIG infusions. I get it. It’s hard for me to grasp too so you might want to read about it before you continue.

In this post I’ll explain all about IVIG infusions!

IVIG Infusions – My Experience

Every three weeks I report to Dr. K’s infusion office by 9:45 a.m. (mostly on time). The nurses working there lead me to my infusion room for the day. There are two semi-comfy reclining chairs in each room, a television, comforting blankets and pillows and the infusion equipment.

First, they take my vital signs and give me my pre-meds-allergy medicine and four ibuprofen. Because I’m receiving plasma donated from millions of people mixed up all into one brand of medicine, my body could reject it. The allergy medicine helps prevent that and the four ibuprofen hopefully helps prevent any fevers, aches, pain and headaches during/after the infusion.

Then, (my least fav part because I am “wuss” when it comes to any needles or medical procedures) the nurse inserts the IV needle. I try to switch arms each time because my veins are sensitive.

They flush the IV line with saline and then hook up the medicine.

Susan at the clinic

EquipmentThe Infusion Begins

For the next five hours, what many CVID patients call “liquid gold” drips through the IV into my vein.

The medicine is given slowly in hopes of lessening the wide-range of possible side effects I could experience. I usually bring books to read or the thick folder of medical bills that need to be paid with me, but rarely do I feel well enough to tackle either.

Within ten to fifteen minutes I start to feel woozy and tired. My vision becomes blurry and sometimes I experience nausea. If the nausea is bad enough, the nurses will stop the infusion and administer nausea medicine.

(During the days leading up to my IVG infusions, I focus on hydrating with electrolyte-infused water. I also make sure to eat protein for breakfast that morning to help lessen the nausea.)

The nurses take care to make sure I continue hydrating with water during the infusion. This leads to bathroom breaks! There’s no bathroom in the infusion clinic, but rather right outside in the hallway (which is just so convenient-NOT!). So, I’ve become quite skilled at wheeling my IV into the bathroom so we don’t have to stop the infusion process.

The IVIG Infusion Goes On and On…

There I sit, hour after long hour. This is pure torture for a “doer” like me!

Drip…drip…drip…drip…

The medicine being infused into my body is made up of human immunoglobulin. Immunoglobulin is found in the blood’s plasma. It contains the antibodies that fight germs and disease. When healthy people donate blood, the immunoglobulin is separated out, screened and purified during the medicine production process. IVIG gives me the antibodies that my body cannot make on its own to fight off infections.

Four to Five Hours and I’m Finally Done!

SupportI’m usually well enough to drive myself home but my mom has come to almost every infusion (thank you Mom!) in case I can not.

As soon as they take my vitals, flush and remove the IV; I get out of there as fast as I can. However, now I must face the “fun” part…the side effects!

The side effects can range from major fatigue, painful migraines, nausea, fever, and aches and pains. Of course, I have medicine to try to make these side effects manageable, but usually I’m in my bed for one or two days.

In-between My IVIG Infusions

Over the next three weeks I experience what I call high and low days. Although I no longer get as sick or as frequently since receiving IgG medicine, I can still get as sick as anyone with a normal immune system. Basically, the medicine helps “even the playing field” so I can live as normally as possible.

Unfortunately, because my body doesn’t produce its own antibodies, it uses those found in the IgG medicine over the next few weeks. That is why I must receive IVIG infusions every three weeks for the rest of my life.

If you would like to learn more about the side effects I experience, check out my post entitled The Best and Worst IVIG Side Effects You May Experience.

Please feel free to email me with any questions at susanalynneday@gmail.com!

Stay Zebra Strong my friends!

ABOUT THE AUTHOR

Though DIVA as she may be, her path to success was not easy and is always evolving. Go here to read about her journey in “Becoming the CVIDiva.” If you want to send Susan Alynne a quick message, then visit her contact page here.