Sunday, October 10, 2010

CVID & Subcutaneous Immune Globulin (SubQ)

First of all let me address how BRAVE I am for showing off my jelly rolls haha.  All in the name of science hehe.  Well well. For those of you who are new, I have an immune disease called CVID, Common Variable Immunodeficiency.  For the last two years I have been getting IVIG - Intravenous Immune Globulin.  This stuff is rough.  The first product I was on, Flebogamma, was horrid!  Horrible pain, migraines and more after my infusion.  Needless to say I would have to pack breakfast AND lunch because I was there at least 6 hours.  We had just about got it down to a science on IV day:  Pack lots of food, take a pillow, warm socks, laptop and earphones so I can watch Netflix.  I had finally gotten on a product that produced NO side effects.  Amazing.  Then BAM a new doc puts me on subq.  Its not so bad, takes up a couple of hours of my time once per week.  The pump has this nifty little pouch you can carry it around in.  I actually went to Kohls on my second infusion carrying it around with me.  It should help keep my IgG levels more steady and consistent.  No more 4th week troughs for me NO-SIR.

It is quite the adjustment honestly.  Its not so much the needles that is hard.  It is all that PREPPING! My gawd! I am so freaking paranoid after watching the videos and working with the nurse 2 times I am almost positive I am going to get some horrid flesh eating bacteria in me from improper cleansing.

Ok sorry, crazy rant haha (sort of true though).  The nurse then sends you home with your supplies:  a big RED sharps container and a big box for all your needles, syringes, tape and clampy connector things.  I have no idea what they are called frankly.  Also a flip chart of the "best" places to poke yourself.  It could just be me, but I cannot reach my own tush if you paid me a million dollars.  I'm sure there is an "inch to pinch" but I can't reach it.  If I was 20? Maybe.  My seven year old would be happy to stick mama in the butt with a needle but I didn't offer.

First thing I did wrong when I was on my own?  Forget to let it come to room temperature.  LAME.  So that put me back an hour.  No biggie.  EXCEPT I forgot by then my Emla cream had worn off.  It's this nifty numbing cream you put on to help the bite of the pokes not feel so.....pokey.

Secondly, my child, had to TOUCH everything.  No, not just point and ask what it was, she needed to POKE it.  This produced a screech from me and then the wasting of many more packets of alcohol wipes.

All in all, I must say, it is not that bad.  I have a rash now, but maybe that can be attributed to the cream? It's my 3rd subq and first rash and first time with the cream.  So I'm going to blame that instead of worrying about it.

I think the funnest part is my daughter trying to film me with my crappy cell phone (God, please give me an android phone, I really really really need one, really) (Oh and did I say I really NEED one?).  I was going to attach but it is NOT being cooperative.  Stage fright possibly? I will also attach a picture for those of you who need a visual :)  Until next time....ta ta!



  1. Thank you for sharing your story. Our sixteen year old daughter was diagnosed with cvid yesterday. We have a lot of research to do between now and Tuesday. Would you say all in all that the subcutaneous is a better route to take.. again.. she's only sixteen and scared to death of the thought of a bunch of little needles in her belly. :(

  2. Awww poor thing. The good news is getting a diagnosis is normally the hardest part. And usually children do the best on treatment. Very resilient. If i were a teen i would personally opt for ivig. Its waaaay less if a commitment. You get it every 4 weeks, recover for a day or 2 then move on wit your life. The negatives are some have crummy reactions but not all. Migraines and nauseas and fatigue are most common. Tips: hydrate well before like double the normal amount, gatorade on hand for the migraine (pain meds dont work) and make them go SLOW!!! Like 6 hours. Too fast is the #1 reason of side effects. She may feel like she hass the flu for a couple days. She can always switch to subq later. Given it time to work - 6 months to a year. Expect her to lead a normal life, really. There is nothing this disease should hold her back from. Would be happy to give you my number if you have questions or just need to talk to someone who has this disease! Also my favorite support group is and please check out

  3. Sorry for the typos im in a little tablet haha

  4. I have CVID too. I know the pain and how bad it hurts. I dont get mine at home because I still get really sick from them. I have to James Care. I started getting my IVIG at the age of 12. There is times when I ask why do I have this? But I stop and think it so I can show others that they can do what ever you want. God gives you want he knows you can handle. I still have days where all I want to do is sleep and do nothing because my body wants to just stop. I know the feeling all to well how you feel. But when I go to James Care I see people who have to harder then me. All I can do is pray for them and show them God. Let God help you show his love tho you.