On Friday June 7th I was diagnosed with CVID; Common Variable Immunodeficiency. A brand new diagnosis (finally) and this one actually makes sense! Back Story: I have been sick for what seems like my entire life and with so many different illnesses I can hardly keep them all straight. IBS, Gastritis, Asthma, Celiac Disease, Allergies, Bronchitis, Strep Throat, Ear infections, Sinus infections, pneumonia, Eczema, Impetigo, Ring worm, Chicken Pox, (what my doctor said was the worst case she had ever seen and it took me months to recover) and Coxsackie Virus ( which I had as an adult and that is almost unheard of ). I feel like I probably missed a couple but you get the idea, I’ve had it all! A lot of times I have felt like a hypochondriac or like it was all in my head. But having bronchitis 2 or 3 times a year is not normal. Having 8 sinus infections in 3 years is also not normal. Only feeling “well” while on antibiotics is not normal. The way I feel every day when I wake up is not how a normal healthy person should feel. It is however my normal and I have just gotten used to it. The Appointment in May: For the past couple of years I have been having these awful Asthma flare ups and I had had enough! I finally made an appointment with an Asthma, Allergy and Immunology specialist for May 23rd. I had never been so excited for a doctors appointment because I felt like I was so desperate for relief. When the appointment came I thought I would be going in to say “ My asthma is terrible, my allergies are terrible, I’m sick all the time and I need better asthma/allergy meds” but I didn’t even get a chance to talk. Dr. Pasha only wanted to talk about one thing! My igA levels! What the hell is that, you ask? Well 6 years ago I went to a gastroenterologist because I was tired of getting sick every time I ate. There I was diagnosed with Celiac disease. Now, she said she couldn’t actually see the damage that celiac causes in my intestines like they normally do BUT I had significantly low igA levels and that was a pretty clear indication that I had Celiac. Oh and by the way I also had Giardiasis! Giardiasis is an intestinal (bowel) illness caused by a microscopic parasite called Giardia lamblia. Yeah, that’s right, a mother F’n PARASITE! Gross. I was treated for the parasitic infection and told to follow a gluten free diet and was sent on my way. Dr. Pasha came in with his computer and said “Let’s talk about these igA levels” I was like what? No, I want to talk about my asthma but yeah, ok I was told they were low. He goes on to say my levels were not only low but were undetectable and he wanted to do blood work to see if Any of my other levels were low. There is igA, igG, IgM, and igE. If the other levels were low there would be treatment. If it was only the igA I would be put on preventative antibiotics basically forever to keep me from getting sick. WHAT? He gave me the script for blood work and told me to make an appointment at the desk for allergy tests and he would see me soon. I’m like wtf just happened but yeah ok I’ll go next door and get my blood taken. So off I went. Two weeks went by and I heard nothing. And then I got a letter. “We have been trying to call you but your voicemail is full, you need to call the office right away so we can talk about you test results” Ok. I call and the receptionist says Dr. Pasha wants to see you tomorrow morning. Ok. The next day was an overwhelming whirlwind of knowledge. I was told I was deficient across the board. “You basically have NO immune system.” Let me hit you with a little science. My body does not produce the anti-bodies used to fight off infection. An antibody, also known as an immunoglobulin, is a large, Y-shaped protein produced mainly by plasma cells that is used by the immune system to neutralize pathogens such as pathogenic bacteria and viruses. igG is like the mother ship! It is the most abundant type of antibody and is found in all body fluids and protects against bacterial and viral infections. I have none of that! igA is found in the mucous membranes such as the respiratory passages and gastrointestinal tract. I have none of that. igM is found in the blood and lymph fluid and is the first antibody to be made by the body to fight off new infection. I have none of that! I don’t have any of it. None of the good stuff. It’s called CVID and it’s forever... The Diagnosis!: Common variable immunodeficiency (CVID) is an immune disorder characterized by recurrent infections and low antibody levels, specifically in immunoglobulin (Ig) types IgG, IgM and IgA.[1] Generally symptoms include high susceptibility to foreign invaders, chronic lung disease, and inflammation and infection of the gastrointestinal tract.[1] However, symptoms vary greatly between people. CVID is a lifelong disease. Cool. So this is what I know so far. I need treatment so basically I don’t get sick and die. I could start treatment or I could sign papers refusing treatment and take my chances... I choose treatment. I choose my health. I choose and better quality of life and I choose to fight this. Treatment options are limited, and usually include lifelong immunoglobulin replacement therapy. This therapy is thought to help reduce bacterial infections. This treatment alone is not wholly effective, and many people still experience other symptoms like lung disease and noninfectious inflammatory symptoms. Key word there is “lifelong” this will be my new life. This will be forever. This for me was the hardest part. It’s not a “treat and it goes away” kind of illness, it’s a “treat forever so you don’t get sick” kind of illness. I will be starting Subcutaneous Immunoglobulin infusions. Subcutaneous Immunoglobulin (SCIg) infusions are given by slowly injecting purified immunoglobulin into fatty tissue just underneath the skin. SCIg can be given at home, using a mechanical infusion pump. So I will be learning how to put needles into my skin that hook up to this pump that will fill me with the good stuff! The good stuff is the immunoglobulin that is separated from healthy peoples blood they donate. *So go donate blood because it’s important to people like me!* Luckily I can do this at home and I have loved ones willing to help me. This is all very overwhelming and it’s a lot to process. I have been on an emotional roller coaster and still don’t really know how I feel. I am happy to have an answer and I am looking forward to feeling better. If I feel better. The word “forever” is the scariest part but I am up for it. I don’t really have a choice. The purpose of this blog to help raise awareness about CVID and teach those around me about my illness. This is why I am tired all the time and this is why I am sick all the time. I also hope that my journey with CVID could reach someone else that has been diagnosed and is lying awake in bed searching the internet for every bit of information they can find. So stay tuned! I’m sure it will be a bumpy ride. Next stop, Infusions!! I’ll let you know how it goes 😉
