Bronchial Tube Stenosis!

[Dev]

Hello, you guys.
Had my 5th successful Subglottic Stenosis surgery yesterday. HOWEVER! It appears I have scar tissue (stenosis) in my left bronchial tube opening.

My ENT didn't touch it, but said we had to keep an eye on it. It looked 'healthy'/no nodules or inflammation, just scar tissue banding. I have since rallied my other doctors and will be switching from Methotrexate to Imuran to make sure there is no more spread as well as a CT to make sure the rest of my lung looks good. JUST WHEN I THOUGHT I HAD THIS DIALED lol

Have any of you lived with this form of stenosis? I am still active (ride my bike and hike and all that fun stuff) so I am hoping that we can leave it/get it shot with steroids and dilate if we have to. Never had pneumonia or other lung illnesses. I hear this is pretty rare in our community

[Dirty Don]

Don't know what you dialed in, but it's so characteristic of 'us' to look good, feel well, then collapse. Just finished a simultaneous attack of GPA, Valley Fever, and Covid. Did NOT test positive for Covid, GPA scores were high but not bad, and had symptoms of VF...OK, so don't dial in things, I thought I was just tired...have a good one!

[Pete]

Dirty Don

Sounds like you’ve had a rough summer. Hope you’re back to “normal” soon!! 😎

[Dev]

Oh, Don! I hope you are feeling better, that sounds so rough.
That is a good point, I suppose. Set backs are all apart of this illness. I am just scared of this new development, but I hope I can live with it/treat it if I have to.

Like you say, we don't have a choice but to ride it out! No certainty with this illness.

[Dev]

Update on this, for anyone who comes across this looking for help!
I was able to get my bronchoscopy with a dilation down at Stanford with the Pulm. Intervention specialist Dr. Brian Shaller. The surgery went well (9/26), and I seem to be healing well from it.
I will be getting a second one in December. Dr. said that it isnt about getting the opening back to where it was, but to get it to where it will be open enough for me to function. I am hopeful that the close succession of surgeries will stabilize the stenosis in this area for a longer period of time. While it doesnt fix it, I am grateful and hopeful this minor surgery can maintain my airway enough for me to still run around and bike & hike :)
Also, it turns out that I have always had this stenosis (per CT scan from 2018), but it got set off by something (rheum. suspects Covid cough). Hope everyone is doing well ~