Thursday, July 5, 2012

Diagnosed at Last!

In 2002 customers started asking me if I had asthma.    "Do you have a puffer or something?" they would ask uncomfortably. For about a year, I too had been noticing it, a wheezing sound during exertion.......mostly with playing tennis, jogging, and climbing stairs. By 2003, however, I noticed the wheezing sound even at rest, accompanied by a constant urge to cough and clear my throat.

I started with my general doctor who incorrectly presumed asthma, and sent me home with a Pulmacort puffer. This was followed by an allergist, who tested me for everything under the sun.  She ran the computer simulated candle test on me.  "You're not doing it right."  she said, as I blew on the mouthpiece till blue in the face. "Try again.  I need you to fill your lungs fully and exhale completely until you blow all the candles out." She was baffled, as she couldn't even get a result on the test; I absolutely could not exhale fast enough to blow the last two to three candles out. "It's as if you're an eighty year old smoker." she concluded.

Next I saw an ENT doc.  He did a couple tests, saw nothing, and prescribed me Paxil and Prevacid, assuming it was panic attacks or acid reflux.  Crying uncontrollably on the way home, I resolved to just forget about it.  Maybe this was just stress?  Maybe it's just not bad enough to keep trying different doctors.  So I wheeze a bit, no biggie, I am still capable of running a normal life, right?

My resolve lasted about six more months. Constantly out of breath, panting al the time, I vowed to start seeking a diagnosis again.  Dr. Heithacher, a second ENT doctor was the first doctor who thought scoping down my throat was a bright idea.  Heithecher did a bronchoscope and CT scans and he said, "Heather, I don't know what you have, but you have something, and I'd like to help you find a diagnosis."  I felt so much relief knowing I now had an advocate.   After seeing the scans, he still didn't know what it was, but he did know who I should see next.

I was extremely nervous on my three hour drive to my referral in San Francisco.  After arriving at UCSF, Dr. Dedo's staff ushered me into a very small room with many many plaques and recognition in the ENT world, clearly this guy was 'the man'.   "It feels like you're breathing through a straw, right?". he says confidently. "Heather, I have an explanation for your shortness of breath, in fact I feel certain of it without even having examined you", he says.  He called it IPSS, an acronym for Ideopathic Progressive Subglottic Stenosis.  He loosely attributed the cause as female hormones, and asked me to stop using birth control. He said I would need a series of three surgeries to make it go away.

For a second opinion, I flew out to Rochester and saw a Mayo Clinic physician.  "You're seeing Dr. Dedo?" he asked.  "He invented the Dedoscope, which we use here at Mayo to keep the airway open while operating.  My recommendation would be to go back to UCSF and do the series with Dedo."   So that's what I did.

Dr. Dedo assured me that I would need a series of three laser laryngoscopy procedures, spaced out by three months each. He said my now 6mm trachea would be back to a normal 11mm.  Little did I know, I would continue to be treated by Dr. Dedo for 9 years.

After my third laser surgery, my airway narrowed once again 10 months later, as the scar tissue closed in.  Feelings of devastation crept up as the realization hit me:  My subglottic stenosis requires surgery yearly..........I would need treatment every year............FOR THE REST OF MY LIFE!!!!!!!!!!!!!!!!!!

1 comment:

  1. Dear Heather Anne,
    FYI, there is a thoracic surgeon at Mass General who specializes in subglottic surgery, in particular, idiopathic subglottic stenosis. Good luck.