Prior to being diagnosed, immune deficiencies were not something I was aware of (aside from AIDS). Growing up I was never tested for immune issues and never did it cross my mind that I had one. It wasn't until I was 30 years old that I was sent to a hematologist who almost instantly knew I had CVID.
What has come of that has been nothing short of the hardest trial of my life, and that of my sons as well.
When I was diagnosed with CVID, (common variable immunodeficiency) I was devastated. This disease is incurable, has many risks of cancer and autoimmune issues, and the only treatment involves IV's and needles. Not too long after I started treatment, with monthly IV's that would last 5+ hours and cause me to feel like I had the flu for a week after, my 6 year old son was diagnosed as well. I will never forget him watching me hook up my infusion at home one night and saying to me, "your life is really awful." "Why?" I asked. "Because you have to do this the rest of your life." My heart shattered. He had no idea that he would have a much longer journey then I ever would.
My son has no immunity to illnesses. Where a normal healthy person would have immunity to germs they were in contact with, or were vaccinated against, he doesn't have anything.
His immune memory,so to speak, simply doesn't work. Because of that, he has no real protection from germs. His weekly treatments provide him with immunity from hundreds of donors. The immunoglobulin infusions are literally like getting a blood transfusion, except they include only the IGG portion of the blood plasma. The donors immunity is then used by his body to help protect him from getting sick frequently, and to save his body from permanent organ damage from repeat infections.
The hardest part of being a parent to a child with CVID is that you feel totally alone.
Like no one else gets what you go through each and every day, each and every infusion. Because these diseases are not well known, most people do not even understand what you have, let alone what the infusions are like. I have to hold my screaming 6 year old down, and stick 2 needles into his little body, as a pump works to put the medicine slowly under his skin into the subcutaneous layer. The process is long, the treatment painful, but the alternative is too awful to think about.
Before this, I was never a germ-a-phobe...well okay, I was never okay with sharing drinks or chapstick, but that's another story. Now I feel like if someone has a cough I must retreat like they have the plague! As do most CVID patients, we have issues with our lungs, so getting a cold that lingers in the lungs is just not good.
With school starting in a few days, I worry about my son. I want him to be a normal little boy, enjoying first grade and making new friends. But I worry. Worry about germs in the classroom. Worry, about the what if's with the disease. Worry about his weekly infusions and if he will ever get used to them and not fight and scream when he gets them. I just pray he feels comfortable enough to tell his friends about his disease, and it doesn't make him feel isolated and weird. I'm thankful I can share in this with him, and truly understand what he is going through.