Update about IVIG #2

I just wanted to take a minute to update you on what has been going on. I was supposed to have treatment (IVIG #2) this past Friday but was still experiencing side effects from the first one and made a decision not to do it. We have been talking to the immunologist every week on the phone and she keeps assuring me that the next one wouldn't be as severe: she planned on adding more fluids, steroids to help with any inflammation that would occur, and a much slower infusion rate. Although all of these things sounded helpful, my anxiety continued to grow. The past two weeks my emotions have been haywire and I felt like I wasn't ready, mentally or physically, for another attempt at an IVIG.  As this fear grew, my Mom and I started talking to my primary doctor about what she would do. Although, she did not know why my body was reacting in this way she did feel that my IV should be delayed until I felt better or my headaches were under control. With this advice, and a ton of personal research, I called it off.

I am happy to tell you that I am out of the house, sitting on my computer at a coffee shop, finally having relief from my severe headache and feeling a little bit more like myself. Unfortunately, feeling like myself also comes with my fevers and fatigue that have returned in full throttle. Of course I am frustrated that I can't catch a break right now but I know we are going to work this week to make a decision. We are looking into changing the IVIG brand or possibly doing SubQ injections which are smaller, more frequent injections of IgG that come with few side effects (but are a lot more work and more costly). Ultimately, the decision is up to me- which is terrifying because I don't know what is right. I wish someone would glimpse into the future really quickly and let me know which door to open. I'm sure I will take all of my doctors advice to heart and we will get me fixed up in the foreseeable future- I just hope months like this come few and far between.

I will do my best to let you know my decision and the new treatment dates as soon as I know! Keep me in your thoughts because your support has been so helpful to my mental state. Thank you!!