5 Months In Update
I have had 5, once a month IVIG treatments since my CVID diagnosis in October of 2025. Some things I have learned:
The needle is thick. Often it takes multiple sticks to get the needle in properly. Seems like the top of my hand works best but that stings pretty much for the entire 3.5 hours. Also, when they bandaged it this last time, I was gushing blood as I started to leave. Good times.
Hydration is key. Even if it is just so I can honestly say to the nurses prior to the procedure that I have been drinking water and tea constantly for the last three days…it matters.
While I have fortunately not had any measurable side effects, I have noticed the following things, my energy increases immediately following the procedure and the week before my next one I have next to no energy. I wonder if this is common. My skin is the same. By the end of the cycle what starts feeling like mild eczema feels like oh…leprosy?
I’m 68. Probably have had CVID for many years prior to the diagnosis. It’s heartbreaking to be surrounded by people much sicker than me during these treatments. Makes my own struggle feel selfish and whiny. I keep my chin up and endure as I know this is my new normal. The support staff at my facility has been terrific. The hardest part for me is knowing so much of my life is in the hands of the Pharmaceutical Industry and Health Insurance Company.
My sincere love and prayers go to all who find themselves in similar situations
I’m Michael
I have CViD