How to Live your Life with CVID

September 20, 2007 at 3:18 pm 5 comments

For the past 6 months I have been freaked out about my diagnosis. I was really sick in March; I came down with a really bad lung infection secondary to a cold that I had caught from some family members. I developed swollen, painful nodes, my hives went into overdrive, I was dizzy all the time and my knees, elbows and hip joints began to swell and get painful. Additionally, I developed acute pain under my left rib cage. I felt like my body had just decided to fall apart.

In the meantime, I was getting bored with my job. I had held the same position for almost four years. I was feeling unchallenged, under appreciated, micromanaged and generally unhappy. My wife implored me to find something new. “Quit and I’ll be your sugar mama until you find a new job,” she would regularly say.

But I had great insurance and was not in the greatest health. I had just begun successful IVIG treatments, at $10,000 a pop that stuff ain’t cheap. Also, I was having CAT scans, expensive blood tests, regular visits to the emergency room. I felt like my health was a huge question mark and I didn’t want a change in insurance to suddenly cost me exorbitant amounts out of pocket. Additionally, I had great long term disability insurance. If I need to be out for extended periods receiving chemo for lymphoma or colon cancer or whatever, I would be well taken care of.

But as the docs look at me (and keep looking) they don’t find anything worrisome about my condition. I have no signs of lymphoma. I have no symptoms that could be construed as some sort of serious autoimmune disorder like Sjogren’s or Lupus or MS. I have your basic run-of-the-mill CVID issues…

and I have always had a dream — to live and work in New York City.

The doctors are still trying to find out why my hives are so bad and why my gut hurts so much (they think the two symptoms may be related) and there is some streaking in the fat that surrounds my colon. I am scheduled for a colonoscopy later next week to see if I have any serious gastrointestinal issues.

I just gave notice today at work, I will be starting a new job, a more interesting job in a great area, with really interesting people in 4 weeks. The insurance isn’t quite as good: there is a bigger copay on drugs, I have to pay more for my wife and kid. But it’s in SoHo.

I don’t know if something is seriously wrong with me, it seems always right around the corner. But when I walk down the street today I keep my eyes straight ahead. There is plenty to see in Manhattan right in front of you.


Entry filed under: allergies, autoimmune disease, Chronic Urticaria, Common Variable Immunodeficiency(CVID), cvid, disease, doctors, Health, hives, immune system, immunodeficiency, IVIG, medicine, Primary Immunodeficiency, Uncategorized.

Herpes-related Colitis in Person with CVID Visiting the Ass Man

5 Comments Add your own

  • 1. Visiting the Ass Man « The Idiopath  |  September 25, 2007 at 3:52 pm

    […] successful IVIG infusions and it was time to figure out why I was still experiencing all these crazy symptoms. The best place to start, she asserted was with the colon. People with CVID often have issues with […]

  • 2. Christine`  |  November 29, 2007 at 11:05 pm

    ……I, too, have just been t his summer diagnosed with CVID and will get my first infusion treatment in Dec. The gut problem and hives are candidas or “yeast”; a fungus that pops up when your immune system is low and from overuse of antibiotics. Take probiotics in vitamin capsule form and also get some diflucan from your doctor. Good luck.

  • 3. Stevie Schneck  |  October 17, 2008 at 9:51 am

    Hello. I found your info very interesting. I have several questions about Chronic hives. Please email me. I really need someone to talk to who understand. thanks

  • 4. Kathy  |  January 30, 2009 at 6:24 pm

    I have CVID as well as my son….oh the beauty of genetics. I have been doing SubQ for about one year and it wporkd much better for me. No more migraines, no more aseptic menegitis, it only takes one hour instead of 8 hours I love it. My son does much better on the regular infusion for some reason. He was having lots more breakthrough infections with subQ might have been a fluke but we put him back on regular infusions. I can relate to stomach problems. I spent 9 days in the hospital recently with inflammation in the colon, ulcer in the rectum and esophagus. I was throwing up in my mouth all day for 4 weeks and sick sick sick. I started on MiraLax (over the counter) twice a day when I got out and it helps some. Good Luck. Keep your chin up. I have been on infusions for 5 years now and still have breakthrough infections almost monthly.

  • 5. donna  |  April 7, 2009 at 8:06 am

    How to find financial coverage for treatment.


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