IDIOPATHIC SUBGLOTTIC STENOSIS

Idiopathic Subglottic Stenosis (ISS). It’s a mouthful. Literally. It’s the narrowing of the upper airway, caused by inflammation and scar tissue. Idiopathic means there is no known reason why this occurs. It was a long journey to finally get this diagnosis.

My Journey…

Shortly after I had Noah I started to feel like I was out of breath. At first I put it down to carrying a baby in a baby car seat and also a baby bag everywhere I went, but it got worse. Now I was feeling out of breath all the time, walking, talking, singing songs and reading to Noah. It almost felt like something was obstructing my throat rather than my lungs not taking in enough air.

Finally I had enough and went to my family doctor. I went for blood and heart tests, which all came back healthy. Next I went to a Pulmonologist he thought maybe I had asthma and gave me a puffer and said it may help, it didn’t.

Lastly, I went to an allergists, thank god, because he was the only doctor that took one listen and knew I had to see an ENT. The most obvious doctor for me, one would think. FYI I am allergic to absolutely nothing. It was a long wait but I finally saw an ENT. Almost instantly they knew what the problem was. I had an endoscopy, which is a camera that goes through your nostril down to your throat to see what’s going on. As suspected, my throat was narrowed by scar tissue. It was a bitter-sweet moment. I finally found out what I had and we could move forward in treating this problem. However, it’s not as simple as having a procedure and your healed. As my ENT put it, “its nots a matter of if but when” Idopathic subglottic stenosis will return.

Yes, you may be thinking, big deal. There are worse things out there to have, that is absolutely true. But, don’t be fooled, Idiopathic subglottic stenosis is a really shitty thing to have. It was debilitating for me. I was a new, young mum and I was completely out of breath for the first 10 months of my son’s life. The allergists said I sounded like Darth Vader, which should give you an idea of how loud simply breathing was on a daily basis even when sedentary. Honestly, I feel like it robbed me of my first year with Noah. Unable to catch my breath when reading him a book, singing nursery rhymes, taking him for walks. I became less social because I was so embarrassed of how loud I breathed and I became less active simply because I just couldn’t breath.

I hated every minute of it. It took 8 long months before I finally saw an ENT and was diagnosed. 8 months of breathlessness. It was awful. A time I should have been able to really enjoy as a first time mum.

6 weeks after my initial ENT visit, in December 2014, I had the surgery on my throat, which is a laser surgery that takes about 20 minutes. They laser the scar tissue and dilate the airway. It was instant, I could breath immediately after! It honestly did feel like a miracle. I have been lucky to not have had any more procedures since then. I do have some signs of it coming back but for now its manageable and I can still live my life and workout. A reason why my fitness journey is so important to me. I am so grateful and lucky to have gone this long without needing to have more procedures. I know some woman are not as fortunate and need surgery every few months.

I am so happy I can keep up with my two very active, happy, heathy, gorgeous babes.

 

 

 

 

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