Blog Bites Man

Four days ago on a Saturday, I biked 4.5 miles to 7th Heaven Yoga, took a 1.5 hour class, then biked another 4.5 miles home. What a difference a year makes.

A year ago I was coughing up my lungs in a hospital bed at Summit, unsure of what ailment I was suffering and whether it would ever get better. I had been admitted to the hospital on May 6th, one day after my wedding.

I had been feeling progressively weak and sick and asthmatic for months. A week before my wedding, I went to the hospital because things had become more dire: a rash had broken over my arms and head, terrible pain was striking without warning in my back and legs, and the asthma was totally uncontrollable. At the family physicians office, I was told there was blood in my urine and they sent me to the ER.

At the ER, I learned that my white blood cell count was through the roof and that I had thrush in my throat and mouth. Hematologists said it was cancer. Infectious Disease specialists said it was a massive infection. Another doctor suggested that systemic fungal infections cause all manner of strange symptoms. A dermatologist thought the rash could be from a staph infection. I was told it could be anything from HIV to Tuberculosis, and in fact for a couple hours I had been made to wear a mask to prevent spreading the probable infection. At one point, with my fiance in the room, they were ready to admit me to the hospital, which would force us to cancel the wedding or exchange vows bedside. She broke out in tears.

They decided it wasn’t TB and, against their better judgment, we checked out.

The wedding was a blur. Around 11pm of our wedding night, I excused myself, took Codeine and Tylenol, and fell asleep. The next morning at brunch, while trying my best to enjoy breakfast, I went temporarily blind in my right eye. I can still remember watching the blackness surround my vision and close off, literally a tunnel vision experience. I sat down with my parents and sister and casually mentioned that I couldn’t see from one eye. My sister, a nurse in New York, said “I’m taking you to the hospital.”

Eleven hours in the ER, 72 hours in the hospital, and finally a diagnosis. A pulmonologist looked at the collection of symptoms and said matter-of-factly that in all likeliness it was the very rare Churg Strauss syndrome, a syndrome that used to kill people just 30 or 40 years ago, but today which can be treated simply and effectively with Prednisone. A biopsy of my lungs and one on my arm confirmed that my body was overrun by eosinophils (Churg Strauss is characterized by systemic inflammation; the body responds by producing excessive white blood cells called eosinophils).

Apparently, when he uttered the diagnosis, the attending internist slapped her forehead (”duh!”) because “of course” that was it… it’s something every US-trained doctor studies as part of med school, it’s a good textbook syndrome, but rarely do they encounter it (only 3 out of 100,000 people are diagnosed every year). My family physician said something similar: they thought it was Churg Strauss, but because they had never had experience with it they were uncomfortable about making the diagnosis. And now when I look at the cases on the internet, I see photos of people with rashes on their arms that look identical to what I had

There was a time when people routinely died of Churg Strauss. And people can still be damaged by it if it’s not treated early enough. Fortunately, there’s Prednisone, and for those of us lucky enough to be diagnosed early, the disease (syndrome, really) is eminently treatable and rarely relapses. In my case, the doctor believed Churg Strauss was caused by a very uncommon side effect of a very common medication:

In rare cases, patients on therapy with SINGULAIR may present with systemic eosinophilia, sometimes presenting with clinical features of vasculitis consistent with Churg-Strauss syndrome, a condition which is often treated with systemic corticosteroid therapy.

My family members who were unlucky enough to see me suffering in the hospital were astounded to see how my body responded after a single dose of 20mg of Prednisone. I had been literally gulping for air with each breath, and two hours later was breathing almost normally. A day later it was like nothing happened. A friggin miracle drug, my friend.

Naturally, all this has given me a few insights and opinions about hospitals, insurance, and medical care. First, there is such thing as good medical care, but one still has to be vigilant. Summit was awesome, but the quality of nursing care varied greatly from nurse to nurse. One has to be demanding, sometimes, in order to get better care. Specialists are smart people, but myopic. Hematologists, Infectious Disease specialists, dermatologists, allergists, pulmonogists…. After that experience I’m happy to let my family doctor do the coordination and refer me to the right person next time. I have health insurance, and had a couple thousand dollars of out of pocket costs, but thankfully it wasn’t Sicko revisited.

Ironically, I had applied for life insurance right before all this happened. Minnesota Life extended an offer for a policy, then I was diagnosed with Churg Strauss, and then they revoked their policy. Can you say “assholes?” If I’m ever in Minnesota, I plan to jog several symbolic laps around their HQ. We called several other insurance companies. We called an insurance broker. No one wanted to touch me with 10 foot pole. But just last week, a company came through. The policy ain’t cheap; no preferred rates for me! But as we get ready for our son to be born, I’m thrilled to have it. I feel so incredibly lucky.