22nd-29th April 2024

Elizabeth Cheek

My Primary Immunodeficiency (PI) journey started about 32 years before finally diagnosed with CVID. The majority of my infections were sinus and lung. I had 8 sinus infections in 1991 and due to this had deviated septum repair. Unfortunately, this did not help and surgery was not fun. I was able to work and live a very active life despite the infections but when had bronchitis which early on lasted a week a two it was hard. Later my lung infections along with sinus would last months. I worked as a RN and by this time in my career I was working in offices or hospitals as a case manager. Over the years I continued with infections and so many dosages of antibiotics and steroids. I had a second sinus surgery in 2005 but to my horror did not help any of my infections. I was seen by an allergist for 21 years who aggressively treated my infections. He never checked me for PI and said I was more prone to infections due to my allergies. He had an immunology educational background. He messed up! My PCP who I had for 30 years before he died was a jewel and so kind to me when I was sick. The last 15 years before diagnosis I was sicker, infections lasted longer and more severe and basically could only work full time and then had no ability to do much else. I had some rare virus’s that one caused bleeding vocal cords and another one such severely swollen tonsils my Dr. and I both feared I would need a tracheotomy. My PCP said he never saw anyone get so sick for so long. 2019 I finally spoke with all my doctors; PCP, allergist, ENT and cried that there was something wrong with me. I had infection for 6 months and was so exhausted. My ENT said he will order IgG, IgA and IgM but didn’t know what to do with results. He shared when he received referral years ago for my chronic sinus infections, he assumed this had been done by my allergist. I finally had my answers, low IgG and failed vaccine challenge which means I did not develop antibodies for certain vaccines primarily pneumonia vaccines and began subcutaneous infusions, SQIG. This replaces the antibodies, IgG that I don’t produce and retain. I did this weekly, 4 needles in my stomach, for 2.5 years. Unfortunately, I continued with infections for 2.5 years and it was felt I was not absorbing so switched to intravenous infusions, IVIG. I have gone one year without oral antibiotics and only one lung infection. The last year I have had about 5 colds that have lasted a few weeks to one month each and still working on getting IgG up so went from IVIG every 28 days to every 21 days and IgG finally 1257! In addition, due to my CVID I have iron deficiency and malabsorption so have to get IV iron periodically and take B12 and Vit D to help raise numbers. I have lots of GI issues and recently diagnosed type 1 diabetes, LADA after years of type 2 diabetes. It is unclear if received the antibody for type 1 from my infusions or developed from my CVID alone. CVID is immunodeficiency and immune dysregulation. Autoimmune diseases are not uncommon and I have 2. I also have autoimmune thyroid disease. Symptoms of iron deficiency, when I am low, I get really sick. My hematologist gives me IV iron when saturation less than 20%. By the end of 2020 I finally left work and got on SSDI. I was 58 and worked full time as a RN since I was age 21 so thankfully, I could stop. I am still having a lot of health issues but am starting to feel a bit better and working on getting back into life!

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