Idiopathic Subglottic Stenosis

You know what’s nice? Being able to breathe. That’s one of a few revelations I have had since my surgery 2 weeks ago for Idiopathic Subglottic Stenosis. 
Last year, right before COVID-19 became a recognized threat, I noticed I was having a hard time breathing. If last year had been normal, I would have gone to my doctor about it. But last year was anything but normal. I didn’t want to go ANYWHERE and it became harder and harder to catch my breath. Getting into bed, getting dressed, or walking across my backyard had me breathing heavily. I had to catch my breath ALL the time–it was scary. 
I couldn’t stay at home anymore, I had to see my doctor and hope whatever was affecting me was treatable. This past summer the process started. My doctor said I had allergies and told me to take over-the-counter Antihistamine. I started those, but after a few weeks I realized that they were not helping. I went back to my doctor and he put me on a prescription medication for allergy treatment. He said I had ALL the allergies, inside the house and out. So, I filled my prescription and took it, as well as all the over-the-counter medications. By the time I requested a referral to a specialist, I was taking 3 medications for allergies and my breathing was only getting worse. 
I feel extremely lucky that the day I saw the Ear/Nose/Throat doctor, she noticed I had a whistle when I breathed. She immediately sent me down the hallway to have a laryngoscopy, where another doctor put a camera up my nose and down my throat to look at my vocal cords. She saw scarring on my trachea below my vocal cords and immediately went to get the surgeon. Luckily, the surgeon was in the office (which I was told never happens) and when he saw the image from my laryngoscopy confirmed a diagnosis of Subglottic Stenosis. 
After repeated questions asking whether or not I had had surgery recently or had been intubated–I was diagnosed with Idiopathic Subglottic Stenosis. Which means narrowing of the trachea (stenosis) below the vocal cords (subglottis) for an unknown reason (idiopathic). ISS is a rare disease that affects women almost exclusively. Of the 1 in 400,000 people who have a subglottic stenosis, 15% are from unknown reasons (idiopathic). That’s where I stopped feeling lucky–although I did ponder buying a lottery ticket after my doctor’s appointment.
I scheduled 3 surgeries that day, with 3 weeks in between each surgery. My surgeon said that I would need a micro direct laryngoscopy and bronchoscopy. Where he would expand my trachea with a balloon and remove the scarring. However, the scarring would heal and narrow my trachea again. But in his experience 3 surgeries would fix the problem, and none of his patients ever required a 4th surgery. Surgery #1 is done and I just had a follow-up with my doctor, with another camera up my nose; and he said everything was healing well. I am scheduled for a 2nd surgery with the chance that I may not need a 3rd, as the scarring was not as bad as it COULD have been and I am healing very well. I won’t know about having a 3rd surgery until after the 2nd. But, I do know that my voice will be very rough for a few weeks afterwards. That I will be drinking a lot of apple juice and that chicken noodle soup will be my main meal. I hope that the oral steroids won’t mess me up as much as they did with my first surgery. And I know I will be able to continue breathing.
Also, after my follow-up appointment I got an answer to one of the questions that had been nagging me. When did this start? The answer still makes me shake my head, but after discussing symptoms of ISS with my doctor, he agreed that the scarring of my trachea started just over 10 years ago–10 years! I don’t know how and I don’t know why, but I do know when and that helps a bit.
My second surgery is scheduled for November 10th. I expect it will go as well as the first, and I or Arthur will keep everyone updated. Thank you for being patient with my availability to take calls while I heal.