Good morning. Today I have an infusion, I have to get one every 4 weeks to the day due blowing out my immune system from manic and hypomanic episodes that lasted for long periods of time . Approximately twelve years ago I spent six weeks at Cleveland clinic because I was so sick after nearly two years of continuous mania and hypomania mixed in with rapid cycling and mixed episodes. I had also been quite sick as a teenager after getting mono, pushed to compete in a state competition while working full time plus, developed Epstein Barr virus and was sick for a long year and continued to have medical issues as continued to age.
While at the Cleveland clinic they found out that I have an immune disorder called hypogammaglobulinemia or it’s more common name Common Variable Immune Deficiency (CVID). There are five Gamma proteins in your body that help you fight infections and build up immunity to resist infections through exposure (igA, IgE, IgG, IgM, and IgD). It is most common to only be missing one or two. I am missing three. It is a 1:50,000 people kind of thing. The proteins I am missing help to 1). protect against bacterial and viral, 2). fight the first sign of any infection and is found in the lymph node system, and 3) are found in the mucus and gastrointestinal systems as well as the tears and saliva. For me it means that I used to catch a lot of colds, bronchitis and pneumonia before I started IVIG infusions every month and I still have a lot of gastrointestinal issues. I had to be on a Long Term Disability Leave from my job due to the symptoms for nearly two years and slowly worked my way back to working after diagnosis. So these infusions help me be able to work most of the time. The one scary statistic for this disorder is that the people diagnosed with it are at a 80% higher chance of developing cancer, particularly lymphoma. So for now my small group of nurses keep coming every 4th Saturday to keep me functioning.
The double edged sword with this one is there are three meds that they give for side effects: Benadryl, Tylenol, and Salu-Medrol. The Salu-Medrol is a steroid and steroids are not a great mix for people diagnosed with Bipolar Disorder. I am usually wiped out the day I get my infusion. But the next can have a little bit of mixed state or elevated mood due to the steroid used.
Overall all though I don’t min…it is a little boring to be tied to my armchair for 5 hours every fourth Saturday but I don’t get infections usually. and I am a bit of a germ-a-phobe when it comes to things like sharing drinks, food, washing my hands, etc.
Al handle today well. Nervous Nurse Nancy (Not her real name) was our nurse today and she is the sweetest lady but she appears to get very anxious about things. Al has been one of those things. He was awesome today though and laid done most of the day and slept by my my side. (Totally unusual for him. He thinks our home is his house and that every visitor is here to see him.) Nancy was relieved I could tell because her anxiety level did not go down today. She stood up during the entire infusion!
I regret that my Bipolar Disorder was not caught and understood sooner. I think that if I were probably to really think back that I was experiencing signs of hypomania in high school. I wish my parents would have pushed the issue for me to get the helped I needed while in high school so that maybe by the time I reached college and had my first manic episode I would have considered seeking help versus thinking that it was just normal productive behavior. There is a possibility that the CVID I have had a child onset and an adult onset for me and that it was just missed because they didn’t know enough about the disorder at that time. Whatever reason I have it, it is what is. 12 years ago I was so grateful to finally have an answer and now it is just part of my life routine.
Thanks for letting me share another part of my story with you today.