I have a Primary Immune Disease called CVID - Common Variable Immunodeficiency, also called Hypogammaglobulinemia, is a relatively common primary immune deficiency and affects males and females in equal numbers. The exact incidence is unknown but is about 1 in 50,000.
After the birth of my daughter in 2003 is when I really started to get sick. As a matter of fact, I had bronchitis a few days after I had her. It went downhill from there. It was bronchitis about 8 times per year. Then I started getting sinus infections with them, then ear infections, ear tubes, sinus surgery, strep 7 times in one year, pleurisy. You get the picture. There is nothing like trying to take care of a 1 yr old and going to work with a 103 temperature. My insurance company had me marked as "drug dependent" due to the fact I had been getting cough medicine regularly for years.
My final straw came when I was scheduled for surgery and I came down with pneumonia AGAIN. I demanded my doctor check my immune system and low and behold, it was low. Further testing confirmed that I had a Primary Immune Disease.
What does this mean? To me....it was a blessing. There was a name for it. I wasn't crazy. I was not a hypochondriac. And, AND blessed be, there was a treatment! I receive monthly IVIG infusions that have dramatically reduced the number and severity of my infections. The infusions are literally other peoples immune systems being pumped into me once a month. I consider myself lucky as I do not have some of the ailments the others like me have, irritable bowl, lung disease, etc. I woke up one day with arthritis. Literally overnight. It blows. I cannot be treated by modern arthritis medications as they all lower the immune system.
What you should know. We get sick A LOT. We suffer many other ailments BECAUSE of this disease. I will often say I am fine even if I am not. I am not a germaphobe but do not want people with even a cold over at my house. Why? Your cold could be my next trip to the hospital. CVID was once explained to me as being 1 step away from being a bubble boy.
I am hoping this section of my blog will educate people just a little bit. Please donate blood. It takes 10,000 donors to make 1 bottle of my IVIG product. The next time you say "oh God now whats wrong with you?" stop and think for just a moment, that it's out of our hands. I cannot take vitamins to help, drink green tea, or take B12 shots. Try to be patient and understanding, there may be more going on than meets the eye.
I was surfing the internet about lung disease and found your blog. My husband also had CVID w/ GLILD and was seen at National Jewish. Is there anyway you could email me? I don't think we have met anyone with both! I couldn't find anywhere to send you a message. My email is ap21ril@yahoo.com. Thanks!
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