My Disease - CVID

I have a Primary Immune Disease called CVIDCommon 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 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.

1 comment:

  1. 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 Thanks!