September 27, 2006 at 10:00 am (Uncategorized)

I just returned from a week-long trip to the East Coast, where I met with my team of sarcoidosis specialists in Philadelphia to see whether the sarcoidosis in my heart and lungs has remained dormant on a lower dose of prednisone.

Cue the orchestra. Call in the choir. Join with me in singing, “Alleluia!”

The cardiac MRI and the echocardiogram revealed no evidence of sarcoidosis in my heart and lungs. This doesn’t mean I’m cured, but it does mean I can continue to whittle away at my prednisone dose. I’ve worked my way down from 40 mg. to 15 mg., and now, I have my doctors’ blessing to spend the next six months chipping down the dose to 10 mg.

As good as this news was, it was even better to learn that I didn’t have to return to Philadelphia for re-testing for six months instead of sticking to what had become my usual every-three-months routine. The cardiologist felt that assessing the difference between 15 mg. and 12.5 mg. of prednisone was a tad of overkill, so I can wait until March to get my next cardiac MRI.

Like I said, “Alleluia!”

Assuming my symptoms don’t flare up (and I am strictly forbidding this from happening), this six month period between check-ups will give my family the longest stretch of a normal life we’ve had since my almost three-year old son Andrew was born. I was diagnosed with sarcoidosis when he was three months old, and since then, I’ve had to travel to doctors at least every three months. Andrew has grown up accustomed to the rhythm of packing our bags and decamping to a hotel, where Mommy then disappears for days on end to mysterious doctors. But now, instead of having to balance the holidays with another trip to Philadelphia, we can spend Christmas and Chanukah at home, without worrying about anything more significant than whether or not to teach Andrew how to ski this year or to just focus on sledding and ice skating.

Alleluia indeed.

Several people have wondered if I’m cured, if these positive test results mean that my battle with sarcoidosis is done. I have no idea, and at this point, I don’t really care. I broached this topic with my cardiologist and pulmonologist in Philadelphia and encountered a first-rate dose of doctorly waffling. But hearing both that “anything’s possible” and that people with my “degree of organ involvement” are unlikely to go spontaneously into remission made me resolve to push aside the question of cures and focus instead on the known quantities of 5 mg./day less of a toxic drug flowing in my blood and six months of doctor-free time with my family. There are also the pressing questions of Andrew’s Halloween costume, an upcoming writing project, and cleaning out the garage to think about. I’m unpacking my bags. It doesn’t get much better than that.


  1. Paul said,

    Allelluia Indeed!!!


  2. Mellissa said,

    Congrats on the great news. Definately enjoy your dr free time. And the time you can spend with your family now.

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