When Sick Is Normal
The Tipping Point:
My daughter was born the year I turned 30, and by that time I was perpetually sick. I would attempt to exercise in the times I wasn’t sick, only to bring on another round of being sick. My life was a battle of trying to be well. I was on antibiotics, steroids, inhalers, nebulizers, allergy meds and nasal spays- just about any medicine my doctor could think of. He sent me to all the specialists and each had their own diagnosis: COPD, asthma, reflux, allergies, etc., who in turn prescribed more medications for each of their diagnosis.
As a graphic artist, I could work from home, so I struggled with trying to manage sickness, be a Dad and care for our little girl and continue to work. In addition to the physical distress my body was in, I was also beginning to have vision problems in my left eye that required surgery. This ultimately deteriorated over the next year leaving me without sight in that eye.All of this while barely keeping my head above water physically. When my doctor told me I was allergic to everything in the Dallas area and needed to move to get well. So, in search of better health, we moved to Highland Ranch, Colorado where I took a full-time position with one of my clients.
In the first two weeks of the move, I developed a detached retina. Several surgeries later, I was told “You can either live with being able to sense a bit of light with that eye, or have it totally blacked out.” The retina just wouldn’t heal properly. I opted to keep what light I could see. After that, I met my new allergy and asthma specialist. At this point I was told that I didn’t have asthma, allergies, or any discernable problem in those areas. This doctor’s opinion was that my immune system wasn’t working properly and was causing my body to present as if I had all of these other issues. This was why I couldn’t fight off infections or heal properly. He turned out to be Kaiser Permanente’s top immunologist! The move to Denver was God sent. Finally, I might have an answer.
My physician began with the process of elimination to rule out Auto Immune Diseases, Cancer, etc. Emotionally it was a roller coaster- waiting for the phone call each time I was tested for a disease, thinking this could be the answer and I could get well. Test after test, up and down, I would tell myself, “Whatever it is, we can beat this.”
The initial blood results showed below normal IgG and almost no IgM and IgA. What this basically means is that my body was not making the antibodies needed to fight infection. Because there are many things that can cause a “suppressed” immune system or a Secondary Immunodeficiency the doctor tested away, ruling out one thing after another. At the end of this list was Primary Immunodeficiency in which the genetics of ones own immune system just doesn’t work properly.
I was finally referred to Colorado University Hospital for the Titer Challenge Test, where they inject you with several vaccines and see how your body responds. After three weeks I returned to see if my body did anything. The normal response is an increase in antibody titer. My response was across the board negative. I did not have any increase in antibodies. The diagnosis could now be confirmed.
I remember sitting on the stairs when my doctor called with the verdict. Still hopeful when the phone rang, thinking “no matter what, I can beat this!” Then I heard words like Primary Immune Deficiency (PI), Common Variable Immune Deficiency (CVID), genetic, not curable, lifestyle changes and some success managing with IvIg every 3 weeks for the rest of my life! After communicating the diagnosis to my wife, I began thinking, “I can’t beat this.”
I have a rare Primary Immunodeficiency called CVID, a genetic inability to fight infection. No diseases to fight, no treatment plan to cure me – nothing but the unknown.
In many ways, the year following diagnosis was harder than before. I was still getting sick every quarter; still on all kinds of meds, and worse, I was experiencing major fatigue and sickness from the Ig infusions. My day consisted of working for a couple of hours and then crashing on the couch watching the world go by. The emotions of helplessness were real and I had to fight off depression. People around me didn’t get it. They thought I had AIDS or gave me the ‘you don’t look sick’ verbiage.