IDIOPATHIC SUBGLOTTIC STENOSIS – UPDATE

Last thursday I underwent Microlaryngoscopy. Which is a laser and balloon dilation on my throat for my Idiopathic Subglottic stenosis. You can read more about my journey here. Basically, It’s scar tissue growing in my throat for no known reason (Idiopathic). So over time it makes it very difficult to breathe and do day-to-day activities. Like carrying my children, taking laundry up and down the stairs of course exercise and pretty much anything else that involves movement! I am so pissed off that I even have this pointless disease but there is absolutely nothing I can do about it, so I have to live life as normal as I can.

Really, I try not to let it stop me. I still exercise, at home, because the heavy breathing is pretty embarrassing, so I am pretty damn proud of that! And hello, motherhood, you really can’t stop, when your child wants to be picked up, you pick them up. When your child wants to play chase, you chase them. It’s an absolute struggle but I am not going to sit around on my bum feeling sorry for myself. I may as well move (and still be pissed off)

Back to the surgery…I had the surgery on thursday. Recovery, I feel didn’t happen so quickly this time around. It hurt more and I was tired beyond the usual 24 hours expected after a full anaesthesia. But let me tell you, I am ELATED! I let myself recover for a few days then on Sunday I did a really good warm room detox restoration yoga. I tried it a couple of weeks back and although it wasn’t too challenging moves wise, it was difficult to breathe through such consistent movement. So I went back this past Sunday and it felt SO GOOD! Monday is always leg day. The past few weeks have been very difficult. I think I spent most the time trying to catch my breath than working out but this past monday it was AMAZING to just feel the pain of my legs and not of trying to catch my breath. I was still out of breath but how normal people feel. It may sound silly to the regular Joe, but I almost wanted to cry from happiness of getting through a workout, that my body is more than capable of doing and not feeling like I’m going to die from not being able to catch my breath!

At this stage it’s a life long issue. It’s just a matter of when it will come back verse if. So I want to enjoy it as much as I can and hopefully I can get at least another 2-3 years out of it like I did this time. Maybe next weekend we will go on a family hike because we CAN!

Photos from the weekend of clearrrr breathing!

IDIOPATHIC SUBGLOTTIC STENOSIS

We went to the lake to celebrate Joe’s grandparents 65th wedding anniversary and then on sunday the boys went to monster trucks!

IDIOPATHIC SUBGLOTTIC STENOSIS

IDIOPATHIC SUBGLOTTIC STENOSIS

IDIOPATHIC SUBGLOTTIC STENOSIS

IDIOPATHIC SUBGLOTTIC STENOSIS

IDIOPATHIC SUBGLOTTIC STENOSIS

Her little loves

12 Comments

  1. Darivett C. September 12, 2017 at 8:48 am

    So sorry for that Sarah! Must be annoying having to deal with something like that. my husband suffers from severe acid reflux which causes constant throwing up of whatever he eats. He’s learned to deal with it at this point. I hope you continue to have several clear breathing days girlfriend <3

    Reply
    1. Sarah September 12, 2017 at 9:20 pm

      Gosh that’s got to be hard to live with too.
      Thank you, lovely!

      Reply
  2. Monica September 13, 2017 at 11:29 am

    I’m so so so glad you’re doing better since the surgery, Sarah! That’s such great news!

    Reply
    1. Sarah September 13, 2017 at 12:04 pm

      Thank you! x

      Reply
  3. Elizabeth September 15, 2017 at 7:27 am

    I’m so sorry you have this disease! But I am so glad that the surgery went great! Praying that you’ll be able to get that 2-3 years, and that it won’t come back!

    Reply
    1. Sarah September 15, 2017 at 7:40 am

      Thank you, Elizabeth! x

      Reply
  4. Shadell September 17, 2017 at 5:33 pm

    Im so sorry you are dealing with this! My heart seriously goes out to you and I’m amazed at your strength Mama!

    Reply
    1. Sarah September 17, 2017 at 8:51 pm

      Thank you, lovely xx

      Reply
  5. Tawnya Faust October 29, 2017 at 10:03 am

    I’m so so happy to see someone else with this condition kicking ass, working out, staying positive!! You are a light and I’m so happy you posted your post in the group 🙂 I used to blog too but have since stepped away but I often think about starting again just to talk about ISS in a positive light. Anyway, I’m Tawnya! I’ve had ISS for almost 4 years now and I can relate to so much of this post, mostly I’m just thankful to hear of someone still really LIVING and not using this illness as an excuse! Keep on pushing through girl… we’ve got this!!!

    Reply
    1. Sarah November 2, 2017 at 9:48 am

      Hi Tawnya! I actually first found you from your blog about 3 years ago! We both see Dr Bosch. Thank you for the kind words. I feel like at this point in my life with such little kids I HAVE to be positive and live life how I would with or without ISS. It definitely gets me down and I get really pissed when I am in the thick of it and need another surgery but I still have to keep on going. Stay in touch!! x

      Reply
  6. Aimee Demonte November 14, 2017 at 1:07 pm

    Hi my 7 month old daughter got diagnosed with subglottic stenosis 6 weeks ago, unfortunately she can’t have the laser treatment or the dilation treatment she need reconstruction surgery.

    Had any of your treatment affected your voice? Or do you know of anyone needing the more invaluable surgery that has had positive outcomes?

    I’m scared for my little girl and don’t know what to expect, if anyone can give me a heads up that would be great

    Thank you in advance

    Reply
    1. Sarah November 14, 2017 at 1:18 pm

      Hi Aimee, I’m so so sorry to hear that. I cannot imagine how you feeling having no clue. And your poor sweet girl. There is a group on Facebook I think you would absolutely benefit from. Hearing other people’s stories and their outcome having had the major resection surgery themselves. Look up the group on fb “living with idiopathic subglottic stenosis”

      My voice has not been affected as yet with either of the minor surgeries I’ve had. I also know everyone’s stories are different.

      Hugs to you and your sweet baby girl xx

      Reply

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