Teenage Immuno Ninja Turtles

Check out this hysterical video that used real life versions of the Teenage Mutant Ninja Turtles to describe immunodeficiency. It takes a couple of minutes to get to the good parts but it’s worth it.


September 26, 2007 at 1:13 pm Leave a comment

Visiting the Ass Man

For those of you who don’t understand the Seinfeld reference in this posting’s title, I visited the gastroenterologist today. I was referred by my immunologist. I had had three 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 gastrointestinal infection, inflammation, etc. because they often don’t produce IgA (I know I sure don’t). IgA are the antibodies that primarily protect the colon from infections. She believes that something may be going on in my colon that is stressing my immune system.

So, off I went to see if we could start to determine why I have chronic hives and now arthritis. The doctor said that a CT scan showed that I had enlarged lymph nodes in the fat around my colon and it looked like this tissue was inflamed. He doesn’t think that he will find anything related to my hives but is still going to do a colonoscopy of my small intestine to make sure. I asked if there might be any infections that would cause hives and he was doubtful.

Once again, I have no real answers about the cause of my hives but I will keep trying. I don’t really have a choice.

The Idiopath abides…

September 25, 2007 at 3:52 pm 1 comment

How to Live your Life with CVID

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.

September 20, 2007 at 3:18 pm 5 comments

Herpes-related Colitis in Person with CVID

The association between herpes infection and complications in CVID has been a subject of study for some time. Here is an interesting abstract the found high levels of the common herpes virus in the colon of a woman with CVID and chronic colitis. Valaciclovir was given to her and her colitis cleared up.

Just one more sliver of hope for someone out there with serious bowel issues.

September 13, 2007 at 4:46 am 1 comment

Clinical Trial for New CVID Drug

There is an ongoing phase II drug trial for people with CVID who have bowel issues. It sounds like it may be promising for the treatment of other autoimmune diseases. Check it out and see if it is right for you. Let’s hope it is effective.

September 12, 2007 at 7:58 pm 1 comment

Infusion-related Vein Collapse

Now that I know I am signing up for the IVIG long-haul, I have been thinking about the inevitability of vein collapse. Up until my CVID diagnosis last winter, I had always though that collapsed veins were limited to junkies and chemotherapy patients. They occasionally made it difficult for the executioner to find a good place to inject the condemned. They happened to others.

My sister was diagnosed with breast cancer about four years ago and was put on an aggressive and lengthy chemo regimen. Her veins collapsed one by one and she had to get an IV port implanted. The port allowed drugs to be infused close to her heart. The very idea gave me the creeps. I couldn’t imagine having a permanent opening into one of my veins. I had nightmares that someone would try to inject me with Pepsi or whiskey or Drano while I was sleeping. Of course if they were going to do that, a port wouldn’t really make it any easier than doing it with a plain old syringe! It just seemed weird and somehow dangerous.

Now that I have two uneventful infusions under my belt, it looks like I will need one every month for the rest of my life. Over time, losing the use of veins in my arms and legs is no longer a possibility, it is a virtual certainty. Certainly the primary immunodeficiency forums are replete with reports of this problem.

There are several options available to me:

I will weigh the pros and cons over the next couple of years. Hopefully, I won’t need to make a decision for a long time.

September 7, 2007 at 5:10 pm 2 comments

My CT Scan Results or Son of The Blob

I had an abdominal CT scan on Tuesday and the results just came back. I have a “borderline spleen” according to my immunologist. No, it isn’t a DSM III diagnosis, it means that my spleen is larger than normal but not large enough that it needs to be removed or treated. I am concerned because this began around the same time that I started IV immunoglobulin treatments. I am wondering if there is a causal relationship. My doctor says she has not heard any reports of IVIG being related to splenomegaly but I have read forum posts of patients who have experienced the same thing after their infusions.

I was also told that I have enlarged nodes near my colon.

My doctor says that there is nothing to worry about, there is no sign of lymphoma or tumors. We will need to monitor my spleen and the colon nodes over the next few months. Meanwhile the pressure under my ribcage increases, no sit ups, no running, no interactive sports…I worry.

September 6, 2007 at 2:51 pm 1 comment

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