- Data Quality: 1 star
- Sex: Female
- Age: 40y
- Condition: CVID 2 additional condition(s)
Quality of Life:
- Mental: Mild
- Physical: Mild
- I am: Good
- Female, 40 years
- Madison, WI
- Primary Condition
- First symptom
Complicated CVID patient with zest for life looking for tips, alternative perspectives, and friendship networking.
So the last doc I saw (GI) said "well, you're a complicated little thing, now aren't you?" haha, which is pretty much the story of my life since 1998. The short, short story is that after 6 years of upper respiratory infections and shorter periods between antibiotics, I was diagnosed with Common Variable Immunodeficiency (CVID). Basically, my body went wonky somewhere in my late teens/early twenties and decided to stop producing antibodies. By the time I was diagnosed at 31, i had completely depleted my IGA and IGM resources and my IGG was at 33 (normal is 600-1600). I get monthly infusions of polygam (50g) over about 8 hours.
We were mostly thrilled and thankful to finally have a name for what was going on and that there was a treatment. What we didn't realize was that it was just the beginning of my body going wonky!
Off the top of my head, these are some of the procedures/surgeries/issues I've had since 2004:
Spleenectomy, Hysterectomy, 2 lymph node biopsies, 2 liver biopsies (one transjugular), bronchoscopy, endoscopy, 2 bone marrow biopsies, colonoscopy
Developed allergic reactions to clyndamycin, cephalosporins, dalaudid (generic morphine), macrobid, sulfa drugs, levaquin, and ciprofloxacin.
The CVID has now attacked my liver, causing mild/moderate fibrosis, which in turn has caused hepato-pulmonary syndrome. Blood shunts away from my lungs and doesn't get properly re-oxygenated, resulting in lower pulse ox in general.
All that being said, I live a fairly active life. I work full time, try to stay in shape and be as healthy as possible. Would especially love to hear from patients with similar issues, but looking forward to connecting with anyone who is struggling .
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