I know these pages and posts can be overwhelming, so here is a brief summary of events to this point. Thanks for visiting!
Late 2017- A UTI that evolved into fluctuating fevers as high as 102, abdominal pain and severe fatigue. Throughout 2018 I saw more than a dozen physicians and specialists, had 10+ scans (including PET), an upper endoscopy, a colonoscopy, several days in-patient at Methodist, and countless blood tests August 2018- I was diagnosed with Common Variable Immune Deficiency October 2018- Started immunoglobulin infusions to treat CVID October 30, 2018- saw a hematologist who has extensive knowledge of CVID who believed that it was not an appropriate diagnosis for me and discontinued the infusions. He focused on improving my sleep to enhance my body’s ability to heal by prescribing PT to control muscle spasms in my neck and shoulders and a medicine that allowed my body to reach “deep sleep” more easily. I saw this physician 2 more times before the end of the year, as he monitored my progress. My sleep improved so I don’t tire as quickly, but the fevers and fatigue have persisted. Currently, we are in a bit of a holding pattern to see if my progress continues, as I continue to get a better quality of sleep.
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 ***Update-My first treatment was this past Monday and the treatment itself went well. I haven't felt the best the last couple of days, and it can take as much as several months take to reestablish my levels and feel "better." But I am still encouraged to have a plan and be on the right path.
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!
