I am approximately two years diagnosed
with CVID and these links are for you to refer to as I do research. I am under the care of an immunologist and they are the experts. This site is intended to chronicle my journey and help you on yours; creative, health or otherwise. Please always seek out help if you feel you need it. I am not an expert and so I say the following to you.**
**If you are concerned about any medical or psychiatric symptoms, please contact your family physician or licensed mental-health care provider. In the event of an emergency, please contact 911 (in the US) or present at your nearest emergency department.
The below information is curated by me and I do my best to weed through the newest information. If you have suggestions, recommendations, thoughts, something to add you can always send me a message here.
From Primary Immune
Common Variable Immune Deficiency (CVID) is one of the most frequently diagnosed primary immunodeficiencies, especially in adults, characterized by low levels of serum immunoglobulins and antibodies, which causes an increased susceptibility to infection. While CVID is thought to be due to genetic defects, the exact cause of the disorder is unknown in the large majority of cases.
The clinical course and symptoms of CVID vary widely from mild to severe. The immunoglobulins affected also vary. For example, some patients have a deficiency in all three major types of immumoglobulins: immunoglobulin G (IgG), immunoglobulin A (IgA), and immunoglobulin M (IgM) while others have a shortage of just IgG and IgA. The diagnosis is made by finding that functional antibodies are very low or absent.
Onset of symptoms, including frequent and unusual infections, may first occur during childhood and adolescence; however, for many patients, the diagnosis may not be made until the third to fourth decade of life.
People with CVID have trouble fighting off infections because of a lack of antibodies which are normally made to resist invading microbes. As antibody production is impaired, vaccines are not effective. Recurrent bacterial infections, particularly affecting the upper and lower respiratory tracts, such as in the lungs, sinuses, or ears, are common. Recurrent lung infections can lead to chronic lung disease and potentially life-threatening complications.
CVID diagnosis revealed
After a 5 day stay in the hospital when pneumonia got trapped in my lung lining. Thankfully, my mother (a pharmacist) asked to have this test done. Otherwise I would most likely still be sick every other week, which I was from age 18-39 years old.
I have been diagnosed with CVID for about two years, after having chronic infections since around the age 18. I was somewhat of a sick child but I'd say more "snotty". I always walked around with a stuffy nose.
My first years of illness that I can recall were mostly gut related with a little ear and tonsil infections sprinkled in. Chronic IBS, stomach issues, and more that attacked my digestive tract. I didn't tell anyone until I told my mom at age 22 (when my dad was dying) I thought I had stomach cancer. It was chalked up to me doing too much, something I've heard all my life and the stress related to my father who was in the process of dying and living with Lymphoma which eventually he died of. My doctors believe it's very possible that my father had CVID and it turned into Lymphoma (cancer is common in CVID patients, specifically Lymphoma, and specifically in women, more on that later- I need to do more research.) There is no way that we have to know if he had it. A Stanford doc has told me that he may be able to test his DNA post mortem but we're really not sure and I haven't gone down that path because I'm not sure it' necessary.
I think what matters is that I believe he had it. He suffered from similar ailments, ear infections and immune issues like psoriasis and more. He chose not to do chemo-therapy when he was diagnosed because I believe he was scared. See, what I've neglected to tell you is that my brother was diagnosed with testicular cancer at age 22, was hospitalized for a year and a half when I was age 14, my mother went with him to M.D. Anderson in Houston, Texas (where we were all born) and I stayed with my dad who was diagnosed 6 months later. He lived. Thank god. He almost didn't. More on that later because I suspect it's a huge part of my bipolar and mental issues I have developed. I'm not saying they caused my bipolar or immune issues, it's just a part of my story.
My illness started to move into my lungs and ears and sinuses. Chronic bronchitis, tonsillitis, and ear infections. I married at age 24 and waited 7 years to start having children since we were young and still developing our careers and our marriage. When I was ready my body started to reject pregnancies. It was a terrible time in my life, and I performed all the way through it. I've had 7 (maybe 6, one was so fast we are not even sure it would be considered valid) pregnancies and two children. I would go through it again, however, to get these two kiddos.
I was finally diagnosed after a five day hospital stay when pneumonia to stuck in my lung lining. I am missing all of my immunoglobulins. That means I have zero antibodies that help fight off any infections. For about a little over a year I received IVIG, and intravenous medicine that spins out healthy peoples plasma and allows me to live. I have insurance through my husband. Otherwise I'd literally be screwed as the medicine I receive is between $5000-$10,000 a pop depending on what you receive and how often.
Don't have health insurance? Read here about ways you can appeal.
About 8 weeks ago I switched to weekly subcutaneous infusions that my husband or mom give me on Monday evenings. I do them on Mondays because this medicine is strong, expensive, and knocks me out. I take a hefty dose of allergy medicine to help with the side effects of the medicine going into my skin. I put an ice pack over my tummy as I receive it so that it doesn't result in such bad welts.
I do it on Mondays so I can take a dance class during the day, receive my treatment, be able to rest for 3/4 of the day and take another dance class at 5 pm on Tuesdays. I wear tight pants to keep my tummy from hurting since it's sore the whole day and when I move it is sore. I hold my tummy while working out in my awesome U-jam class that I take, not teach. This class has really helped me this past year. It helps keep my mind calm.
Some of the less serious side effects you may feel after receiving IVIG or Sub Q treatments.
I combat these issues by drinking as much water and electrolytes as possible on the day before, the day of, and the day after receiving treatment, which means Sunday-Tuesday for me.
One random mental issue I deal with on Tuesday nights is forcing myself to not stand front and center in the class on and also not to push myself beyond what I can handle. I know to a normal minded person this would be considered a small decision, but for me it's a difficult one. I often stand in front in my class because a) I'm a dance fitness teacher myself and it helps other people in the class to have another person to look at. In addition, I work harder in class, so do other people and I'd be lying if I said it doesn't feed my performer ego side. I talk to myself before hand and literally say "okay this workout is for your mind and your body, Molly...not to perform, push yourself beyond your boundaries".
Sometimes I succeed and sometimes my ego takes over.
I developed a sense of shame as I continued to be sick. Friends and family didn't mean to sound annoyed when I got sick but that's how my mind took it. I'm always front and center in the room, in my daily life, I'm loud, people are comfortable with me leading them, but it can get annoying. I know I've said, "jeez that chick is so dramatic, she's always sick" a few times in my life about people I know.
Looking back, I see myself pretending not to be sick so I wouldn't be missing from events and letting people down. It started a pattern in my life that I think has royally f'd me up, mentally and physically. I finally feel like it's time to unpack it all in order to help others who may be going through the same thing.
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