Diagnosed with Common Variable Immune Deficiency at 62

My medical journey began in 2009, when I was 62, but I didn’t have real answers for another two years. After months of severe abdominal issues, my gastroenterologist diagnosed lymphocytic colitis, a chronic disease. After months of rest, diet change and medication, I was finally feeling well again when I had a sinus infection that required antibiotics.

After only a few days on the medication, I was hospitalized with C. difficile. After five days in isolation and two types of treatment, I was discharged. It took months before I started to feel well again. At one of my follow-up appointments with my gastroenterologist, I asked if these problems could be a result of an immune deficiency. Although he didn’t think so, he referred me to an immunologist. Shortly afterward, I became the patient of a wonderful, caring and highly trained immunologist. Many immunologists also are allergy specialists, as mine is.

After a series of blood tests, my immunologist explained that my immune system was non-existent. He told me I had a chronic disease, Common Variable Immune Deficiency (CVID), which weakens the body’s ability to fight disease, results in serious fatigue, and can have a variety of other effects, often upper respiratory and gastrointestinal, which vary in severity from person to person. Sometimes the pneumonia vaccine can jump start the immune system. Unfortunately it didn’t do that for me.

Next, my immunologist offered two options that would help but not cure me. One was to take a low dose of antibiotics for the rest of my life. The other was to receive intravenous immunoglobulin (IVIG) monthly for the rest of my life. After a great deal of research and discussions with my family physician, I opted for the latter and began infusions. Am I well? No. But I am far better than I was. I have improved because of having an excellent immunologist and knowing how to take care of myself.

I now know that my immune “tank” often feels empty about a week before I am due for another infusion, particularly in times of stress. I know that I must eat and sleep well and the see the doctor immediately if I feel I have any infection. Although my life expectancy likely will not be affected because I was diagnosed before too much damage was done, I cannot look forward to the quality of life I once had expected. People who have been ill repeatedly will understand what it is like to finally have a name for what is wrong with them and know that they can get help!