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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2 Comments

  1. aimee January 16, 2018 at 5:00 am

    Hey! I’m in N.C. and i was just diagnosed with ISS last week. After 2 years of misdiagnosis. Your story sounds similar to mine, but I’m a bit older. Yours was the first post I’ve looked out since deciding to go online to find support and more information. I’m scared shitless of the surgery. It sounds like yours went smooth. ??? How long before you had to undergo again? I’m trying to figure out how to read your other posts. I love them, I can relate!

    Reply
    1. Sarah January 16, 2018 at 6:12 am

      Hi Aimee! I’m sorry you have this same shitty disease (I don’t even know if that’s the correct term) it’s awful but now that you’re diagnosed you can have the laser and feel 100% better! It really is a smooth process. The worst of it is just being tired from the anesthesia! I went almost 3 years between the first and second surgery but a good 8 months of it was bad breathing. Doing ok now tho since the second surgery. I just hate jinxing things! There is a support group on fb that you should totally join. It’s called ‘living with idiopathic subglottic stenosis’ thank you so much for reading! Most my posts have a ‘similar posts’ option below each post or you can search. Otherwise my blog should hopefully be pretty easy to navigate? Let me know otherwise! Let me know how surgery goes! xx

      Reply

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