Just before Christmas last year (2017), I went to the doctor for a suspected UTI. What started as a UTI turned into fluctuating fevers as high as 102, abdominal pain and fatigue, that some days makes it a challenge so simply shower and dry my hair.
After months of more than a dozen physicians and specialists, 10+ scans (including PET), upper endoscopy, colonoscopy, several days in-patient at Methodist, and countless blood tests, in August I was diagnosed with Common Variable Immune Deficiency. Once we receive insurance approval, hopefully within a few weeks, I will start a treatment plan of immunoglobulin infusions once a week and if they are beneficial I will continue them indefinitely. ***Update- Insurance has approved SCIG Infusions and my first is scheduled for October 22nd
With 10 months of illness, and much uncertainty of what we were dealing with, we are weary. But I have an appointment on October 30th with a hematologist who handles many cases where IG infusions are necessary. We are looking forward to starting treatment and learning more about this disease.
We will continue to keep this site updated as I begin the infusions and come to better understand this condition.
We are beyond grateful for supportive family and friends who are walking through this with us. Thanks for your continued prayers! Our God is good and faithful even when we can’t see what is ahead!
Here are a few links, if you would like to learn more about this disorder and treatment-
CVID Info-https://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/common-variable-immune-deficiency/ https://primaryimmune.org/why-is-it-called-common-variable-immune-deficiency-when-it-is-a-rare-diseasehttps://ghr.nlm.nih.gov/condition/common-variable-immune-deficiency#resources
Subcutaneous Immunoglobulin Replacement Therapy-https://primaryimmune.org/treatment-information/immunoglobulin-therapy https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2801034/