Radical Immune System Project: Fun With Lymph!

Dear Friends,

I’m home from the hospital again, just in time to celebrate the inauguration. Yippee! There’s still a bunch of fluid around my heart but they think it will eventually come off with all the steroids they put me on. Some of you have been wondering why Charming Hostess and I have been lying so low for the last several months. The following explains all, if you like health drama:

September: Virus attack October: Immune system reaction, falsely diagnosed as pneumonia

November: Into hospital where I was informed I should be dead already. Thanks! Emergency procedure to drain my heart and lungs of fluids. Immune response addressed with drugs

December: Tired but OK, taking meds to fix up swollen weeping heart

January: Immune system freaks out about original virus, this time falsely diagnosed as a flu. Eventually back to hospital where symptoms are treated and immune response addressed again with drugs, this time for 3 months so they really crush my rampant rebellious immune warriors. Also, they put me through a battery of other tests. I do not have lymphoma and so far I do not have lupus.

So it looks like my immune system may be a bit buggy. However, there is not consensus on this. The Infectious Disease doc, who studies people and viruses all the time, said she thinks my immune system is totally fine and I just pulled two bad cards–a flesh-eating bacteria in 2004 and a virulent heart-eating virus in 2008. The Cardiology doc said what happened to me is kind of unusual–it’s not so weird that the myocarditis and pericardial effusion would come back, but they are not usually preceded by flu-like symptoms. She’s curious about why the virus was able to get my immune system to respond so aggressively, continuing to do so way beyond the point of reason. Well, it is MY radical militant immune system, after all.

The most alarming yet fascinating doctor was the immunologist. He primarily studies auto-immune conditions. He was not at all interested in what the other docs had asked me about. He was mostly curious about my skin (every rash I’ve ever had and when) and hair (which has all fallen out now twice, each time 3 months after a big sickness). He reached his hand into my abdomen and popped my spleen around audibly, which was disconcerting. He played all my lymph nodes, he tickled me with feathers and poked my toes and legs with pins. After all this fun, he diagnosed me with an (unknown) vasculitis and told me I would have an incurable auto-immune disorder for the rest of my life.

So I am a little confused right now, waiting another couple of weeks for lots of lab results and going to various docs twice a week for the next month at least, yuck. Still, I am home from the hospital, resting up, and hoping to soon resume my life with some modicum of normalcy.

Thank you, my dear friends and family for being so supportive in this time. Your kind words and tasty food have sustained me and AnMarie and we both really appreciate you all. I look forward to becoming more healthy so that these sickbed chats are a thing of the past and Charming Hostess can get back on the road.

Many kisses and hugs to all of you.




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Charming Hostess | San Francisco, CA

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