I am doing the Couch Potato to 5K (C25K) training plan. I have attempted to complete the C25K plan three times before and never made it past Week 2 before I quit. I am now into my 4th week, although I am repeating Week 3 because it is still way too much work for me to run 3 minutes.

There are 3 reasons I want to run a 5K and this post is about reason #1.

Nine years ago I was diagnosed with idiopathic subglottic stenosis. We were living in Missouri at the time. I noticed I was beginning to have trouble breathing and my breathing was very noisy. At the time I was teaching at Missouri Southern and I taught a 3 hour night class once a week. I was barely able to talk for more than 5 minutes without significant coughing and wheezing. I also noticed things like I couldn’t walk up the stairs with a basket of laundry without being totally out of breath and having a coughing fit. I went to the doctor, my family practitioner. At first I was told that I had asthma, even though I had never had asthma my entire life. I was put on 2 different inhalers that did nothing for me except make me nervous. I went back to the doctor and she started hinting that I might be anxious. That just made me mad. It was the old, “Sick female and I don’t know what the problem is, so we’ll just assume that it’s anxiety.” I told her that yes I was anxious because I was a healthy female in my early 30s, I couldn’t breathe, and she couldn’t figure out why. In the midst of that, we moved to Baton Rouge…

Once we moved and got decent insurance I went back to the doctor. I decided that I would go to a specialist this time, since my family practice got me nowhere. I was split between seeing a pulmonologist versus an ENT, but ended up with the pulmonologist. It didn’t matter anyway because they both worked in the same building and couldn’t diagnose me so they bounced me back and forth between the two of them trying to come up with a diagnosis. The pulmonologist put me through some pulmonary function tests that came out abnormally, but didn’t fit the pattern of asthma. Then he put me on a prescription cough medicine. It had no effect on my cough or breathing, so he scheduled me for a bronchoscopy a few weeks later. The bronchoscopy is an outpatient procedure that required me to be sedated so that he could take a scope and look down my trachea and into my bronchi. Here’s a picture from that test:

WARNING: Get your mind out of the gutter. These are vocal cords–not the other thing you might be thinking.

That opening beneath my cords is my trachea. It should be wide open–about a quarter to half-dollar size. Instead, mine was about the diameter of a drinking straw.

After the bronchoscopy, my doctor admitted that most people he worked with were elderly and he wasn’t that familiar with 30-something year old tracheal anatomy, but he didn’t see anything particularly alarming, so he referred me to his ENT buddy. The ENT did nasoendoscopy in the office. He was perplexed and couldn’t figure out why I was obviously having significant dyspnea (difficulty breathing) especially on exertion, inhalatory stridor (noisy breathing on inhalation only), and coughing. The ENT kept asking me if I had ever had a history of being intubated or if I had any trauma to my neck. No…and no. Once I saw the picture from my bronch, I essentially diagnosed myself. I asked, “Isn’t my trachea unusually narrow?” The ENT said that it was narrow, but since I didn’t have any history that would justify the narrowness he was flummoxed. (Note to medical and allied health personnel: Just because you don’t know the cause of something doesn’t mean the symptoms don’t exist.) He had me do a C-T scan with contrast and still couldn’t figure me out, so off he sent me to New Orleans to see another specialist…a laryngologist.

For those keeping score, by now a year had passed, I was going to doctor #5, my breathing had gotten so bad that I couldn’t carry on a conversation without gasping for breath, and I still had no diagnosis. I was about 3-6 months out from needing an emergency tracheotomy.

I met with the laryngologist in New Orleans shortly after and he uttered my diagnosis of idiopathic (unknown cause) subglottic (just below the vocal cords) stenosis (narrowing). He looked over the photos from my bronchoscopy, the films from my C-T scan, and then did rigid laryngoscopy on me. Then, he scheduled me for surgery a couple of weeks later. I could have kissed his feet when he told me that what I had had a name, that I wasn’t crazy, and that the situation was fixable. Before surgery I had to see a rheumatologist since sometimes subglottic stenosis is caused by a several different auto-immune disorders, particularly Wegner’s granulomatosis and sarcoidosis. The rheumatologist examined me, took LOTS of blood, ran a bunch of tests, and pronounced me free of any auto-immune disease.

The surgery was an outpatient procedure that looks like this:

The thing about ISS is that since no one knows what causes it, you can’t treat the cause but can only treat the symptoms. It is much more common in women, esp ages 30-50, so it is suspected that estrogen plays a role. However, ISS is also very rare so there is not much research being done. It is often misdiagnosed, as in my case, and mistreated, with some people having to get trachs. I was almost at the point of being trached before being properly diagnosed. The thing about ISS is that one surgery is not enough. It usually happens again. That is true in my case. I have had a total of 3 laser surgeries in the past 9 years. That’s actually pretty good. Some patients have to have surgery every year. The only “cure” for ISS is a tracheal resection. This is a VERY serious surgery in which the diseased part of the trachea is removed and the trachea is sewn back together. The risks are great (death), there is a week recovery in the ICU and one’s chin is frequently sewn to the chest to avoid accidentally hyperextending the neck and pulling the resected trachea apart. There are also frequently significant voice and swallowing problems as well. My laryngologist and I have laughed at the irony of a speech pathologist having a voice disorder. I also have not have the resection because: (1) The laser surgery is working for now. (2) I don’t want a surgery in which I flirt with death unless I am in absolute dire straits and (3) My stenosis is so high up, 8 mm below my vocal cords, that a resection would result in significant voice changes for me. Since my speech and voice are my job…well, I don’t want to go there.

So, I am in terrible aerobic health because off and on for the past nine years I have had fluctuating breathing ability. I went to my new laryngologist in Milwaukee in January 2010. Some minor stenosis is coming back and I have scar tissue in my trachea from my previous surgery. Here’s the most current state of affairs:

The tracheal rings should be even, but you will notice some irregularity. That's the stenosis returning and the residual scar tissue.

Therefore, I have a constant cough because every little bit of mucous gets caught on the scars and stenosis. My mucous elevators (cells responsible for helping get rid of mucous) have been damaged from the surgery as well. I also still have the inhalatory stridor and shortness of breath. People comment on it periodically. However, I’m not gonna let a pesky thing like breath support stop me. My trachea is fairly open at the moment and I am going to seize this opportunity to get my heart and lungs into shape. Overcoming ISS is reason number 1 to run…

(P.S., Sorry this is so long. However, people with ISS scour the net for information and so I tagged my blog so people can find this post. There is not much info out there on the WWW. That’s why I went into such detail. Well, plus I’m just darn wordy too.)