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What a difference a year makes

May 7, 2008

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.

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9 Comments leave one →
  1. Kevin permalink
    May 8, 2008 6:06 pm

    Very positive story. I’m nearing the 2 year anniversary of my diagnosis with Churg Strauss and it is very similar to yours (except I had heart involvement). It truly is amazing what a difference a year makes – my wife and I (and my parents) spent my one year anniversary snorkeling in Maui… it was a wonderful, symbolic life-affirming event. Now a year later, we have a four-month-old son and life goes on as it always has. Prednisone truly is a wonder drug – people can complain all they want about weight gain and night sweats, but the fact is that it is our lifeline. It is incredible how a dose of prednisone can take me from outright sick and asthmatic back to perfect health in 90 minutes. Congrats on year 1 – its good to know there will be many more to come.

  2. May 8, 2008 8:13 pm

    Thanks for commenting, Kevin. Maui sounds like a good 2nd year anniversary, thanks for the idea! :)

  3. Austin permalink
    June 19, 2008 3:49 pm

    What an incredible story. I think we all take our good health for granted at times until we read a story like this. Thanks for sharing!

  4. July 6, 2008 11:09 am

    For information and support, see http://www.vasculitisfoundation.org

  5. September 23, 2008 11:42 am

    Hi John.

    A positive story, and one that I can relate to…I was diagnosed with CSS back in June, came out of the hospital with 12 different meds and now I’m down to 3 including one for the asthma.

    Actually just came back from a long delayed (26 years delayed )honeymoon in Maui also. :)

    I’m on pred and a drug called Immuran, which was a step down from the Cytoxan I was originally prescribed.

    Anyway, I have started a blog about CSS, because I am finding that most folks are not aware of this disease and I think that people should be made aware that this disease exists and what to look for.

    Lew Newmark

    • Tina permalink
      November 19, 2010 12:40 pm

      Hi John, I am really glad to hear that you are doing well. Sadley, my 21 year old daughter was not properly dioagnosed and passed away August 14th of this year. I do not understand why , she displayed all the symptoms, asthma that was worsening, ear infections, 2 sets of tubes put in her ears, congestion, coughing. Her last visit to an ER, they kept her for phenomonia, but within days her lungs, heart and kidneys, were already displaying nicrosis. It really hurts to know that with a proper dioagnosis, I could have had her with me a lot longer. She had been displaying health problems for about a year, it seemed to go very fast. I hope I am not upsetting you, I truely wish you health and happiness. I just needed to hear from someone who is experencing this disease first hand, and could possibly share any information with me would be greatly appreciated. If not I understand. Thank you for reading this, TIna Bennett my daughter was Erika Bennett.

      • November 19, 2010 2:30 pm

        Tina,

        I’m so, so saddened to hear this and terribly sorry for your loss. It is so tragic to lose someone so young. It’s *not* normally a syndrome that affects people who are so young, which also must have made it harder for the doctor’s to diagnose it. It was an incredibly frustrating process to get a diagnosis for my Churg Strauss, it took months to get a diagnosis. The symptoms are so varied and unusual that most doctors don’t understand it at all. Even today, when I meet a new physician, they ask me what to look for. I have to tell my doctors to look at my eosinophil count because it’s not something they normally pay attention to. For me, major symptoms have receded, but I still have tinnitus in both ears and frequent ear infections. Of course, it’s terribly inconvenient and painful, but I feel fortunate.

        I have a 30-month old son now, and I’m thankful that I got diagnosed before any major damage occurred. As a parent, I am deeply affected by your story. And frustrated and angry, too. Our medical system is so much better year after year, yet doctors and hospitals continue to make errors that shouldn’t be so difficult. They’re human, I get it, but still, it’s so frustrating and tragic.

        I hope you heal soon and keep your daughter’s memory alive and remember all the wonderful times in her life.

  6. Elaine permalink
    January 24, 2009 11:07 am

    Hi All,

    Recently been diagnosed with CSS (Sept 08), been on Cyclophosphamide for 3 months intraveneously as well as Prednisolone (down from 60mg to 15mg to date). Started Azathioprene but am aggressively intolerant to it (severe sickness etc) so am awaiting consultants advice as to what is next.

    Unless you have this syndrome/disease no one understands the kind of toll it takes on your body and mind. Extreme tiredness, dizziness, heart palpitations (my heart was involved also), the list goes on and on… Although I am determined to be well again.

    I am in the UK and my health care practitioners are second to none. The Cardio Consultant that I had the good fortune to attend me (Thank God for him) when I was first admitted to hospital, came up with the diagnosis. He saved me from severe internal damage and possibly even death. Its lonely having this condition and Lew, I couldnt agree with you more, health professionals should make more people aware of this disease and the signs and symptoms to look out for.

    I wish you all continued Good Health because, if you have that, you undeniably have everything!

    Elaine X

  7. afulford permalink
    March 5, 2009 6:27 am

    I read this blog with huge interest and can relate to it totally. My mother came down with Churg Strauss a few years ago and it was an extremely traumatic experience. She also started with various ailments such as asthma, rashes and cramps and got progressively worse and we had no idea what it was (neither did the doctors). It finally got so bad and she was in such severe pain that we had to call 999 (we’re in the UK) and an ambulance rushed out. It took 9 specialists to come up with the diagnosis and after treatment she made a recovery. Unfortunately she did suffer some neural damage in her feet, which causes some trouble from time to time, and she still has the asthma but other than that she is back to her normal healthy self. I think the worst part was the not-knowing – watching someone you care about get progressively sicker and not having any explanation or anything you can do to help.

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