A Delayed Diagnosis Gives Way to Online Support for CVID Patient

October 29, 2015

by Shane Johnson

I have had severe allergies and asthma my whole life. Every time the weather changes I end up with multiple infections generally worse during fall and winter. These infections include: upper respiratory, sinus, nose and throat, ear Infections and even a kidney infection or two.

I’m 31 now and because of my poor health I was forced to miss a lot of school (which led to extra bullying), and I have lost countless jobs over attendance issues.
Over the last few decades I have seen approximately 6-10 primary care Dr’s, maybe 6-8 pulmonary specialists, 2-3 asthma and allergy specialist, Been hospitalized at least five times for asthma attacks (one of which I needed to be in the ICU with a plastic tube down my throat breathing for me for almost 5 days). During my last hospital stay in September 2015 I was lucky enough to be assigned a pulmonary doc who checks every patient for CVIDs and he found that my IgG and IgM levels were super, super low and my IgE is very elevated.

At first this info scared the hell out of me, just what i needed was more health problems. but as I started my research and talking to my physicians it all fell into place. I have been experiencing symptoms of this disease my whole life and only now in my 31st year do I have an answer to why I’m always so sick. I just started my infusion treatments to build my immune system back up but I feel recovery is gonna take some time. At this point it’s too early to tell if I will need treatments my whole life. That’s kind of a scary thought, but if it makes me healthy enough to keep up with life and make a livable wage I’m willing to do whatever it takes. My main goal now is to work up to home infusions. My energy levels have been completely null lately so I also need to find some natural ways of boosting my daily energy, and trying to get into a sleep schedule.
I strongly advise anyone with this condition to immediately start doing your own research. It can be overwhelming at first and definitely confusing unless you have medical background, but I found today that just having an idea what’s going on during treatment makes it more bearable. Also find support! It’s a rare diagnosis but there are plenty of us out there (apparently the term used to describe us CVID patients in the community is “Zebras”). Seriously though, I joined a group on social media and within days I was in direct communication with people that share my diagnosis. I also found an Aunt of mine in the group, I had no idea she had CVIDs and may never have if not for the internet!

Stay Connected

Sign up for updates straight to your inbox.