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Living with CVID IgG deficiency

My cousin gave me a great idea, to spread awareness of what we both have. It is Common Variable Immune Deficiency (CVID). Few people realize what it is or what others are going through. Others have it so much worse than I do. I'm so thankful that I finally have a name to what is wrong and a treatment plan. For the last many years, I knew something was wrong, but never knew why.

I'm my case, my body doesn't create one small subclass of Immunoglobulin G (IgG). My overall IgG numbers are actually not horrible, but because that one small subclass (mostly affecting sinus, ear, and lung infections) doesn't work, my body can't look through the list of antibodies it learned to create and send the blueprints to the printer.

Every month, I have to get treatments, plasma from donors combined with medicines, which full in the gaps of the immune system parts I don't have.

For the last few years, I have been sick. Some days I felt better than others, but I have been almost always sick.

Here is a peak into my new normal. Not great, but not horrible. Actually, an improvement from the past. Just clearing the air and giving thanks for the blessing I have, which have allowed me to be diagnosed finally and get treatment.

Treatment day. 5-6 hours sitting in a chair getting medicine and saline pumped in via IV. Get a slight headache, but I'm typically doped up on 3 different forms of antihistamines (Benedryl, Claritin, and Chlortabs - all at once), so I sleep. I keep this up for several days, so most of it is done sleeping. Day 2 feels pretty good, even though I'm sleepy. By the end of day 2-day 4 the side effects occur. Kind of feels like a mild flu. Achy and tired, but the bone pain can be tough. The medicine accumulates in the bone marrow. At this point, I'm also recovering from whatever illness I had the week before.

For the next 2 weeks, I feel amazing. I haven't felt like that for so long, I didn't even realize that my good days the year before were actually so bad. By the end of week 3, I've gotten sick again. Doctor is looking into if tweaks in my treatment, which might extend the healthy time.

Day 21-28. I'm sick again. Usually a viral ear infection, but could head to my lungs, which almost instantly becomes pnemonia. I typically do 1-2 nasal washes and at least one chest percussion per day during this time. My days feel like they are largely spent trying not to get sicker. Then it starts all over. It will likely last the rest of my life.

I don't say this to get sympathy. I'm doing so much better than I did before and hope that it will be even better in the future. There are some who have multiple days of treatments (I only have 1 day), they don't get 2 full weeks of feeling healthy, they have more than just one subclass deficiency. I'm very blessed.

We are working on building awareness, as there may be others who were like me last week. They have been struggling with health for the last few years. Their doctors haven't thought to check their Immunoglobulin levels. If you know of someone like this, I encourage you to send them this link.

If you thought (I can't imagine anyone would but...) "Wow, she has a great life." I do, but it's not all sunshine and roses. Here is to being genuine and helping you appreciate what you have and how lucky you are.

I have 1,2,3,4,7,8,&10.

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