The story of Fay
Most wouldn’t have heard of this disease we certainly hadnt till May 2020.
It is rare & affects Females more, Males are a very low %. I am 65 it seems to be more in the 30s to 40s & there is no cure.
I started with a slight cough in April 2018, it wouldn’t go then wheezing in my throat, in October I saw my GP, he said heart related & I needed to see my Cardiologist, I did & had another Angiogram. That came back better than the last one so back to GP again & still no answers.
January 2019 I saw Cardiologist again general checkup time.
Thankfully on that day he heard me wheezing in my throat, I’d been telling my GP it was in the throat, he said I needed to see a ENT & to tell my GP this.
I had my daughters wedding in March so I went to him for a referral in April, I wanted to get the wedding out of the way first. My GP said cardio problem, but let’s do a CT etc as ENT would do that anyway. We did a Thyroid test & ultrasound then CT of chest & neck all on different days, by this time my shortness of breath was worse & wheezing on excersion.
Its now June I went back to GP & all test etc were ok, he then wanted me back to my cardio, but I didn’t go, my GP didn’t think i needed ENT.
So then I started researching all my medications I was on, & a couple did cause bad shortness of breath & coughing.
A different GP checked my medications & I was able to get off a couple, but it didn’t change anything. You can see how all these symptoms can be mistaken for heart or asthma related things.
So now heading towards end of 2019 & unfortunately struggling & getting worse.
Doing housework was hard & walking around the block was out of the question, talking on ph was hard too, gasping for breath in between talking, not to mention the tiredness I was having I just thought this is just me getting old or I’m imagining it.
My family had noticed all of these symptoms.
Come January 2020 things changed I got a new Cardiologist, my other had retired.
On my first visit he examined me throughly,
he picked up a heart murmur which I didn’t know about, & heard the wheezing coming from my throat.
He said I definitely need to see a ENT & had to go to GP for referral, of course he wrote this in his letter back to him.
He also booked me in for a Echocardiogram as thought I had a heart valve problem, I’m thinking ok maybe the heart valve adding to shortness of breath to?
I went back to GP & finally got my referral, by February 2020 I ended up finding out I had 2 heart valve problems (mild ) so I’m thinking again maybe it’s that.
I finally saw a ENT in April 2020 & he could hear on me walking in that I had a stridor in my breathing etc.
He use a scope up nose & down as far as the voice box but couldn’t see enough so wanted CT of neck & chest done at the same time, as last ones weren’t they were done a week apart. Also on my other CT it had a aid supple change which I didn’t know of & my GP had said nothing about it to me.
I then had my CTs done & I was told that my Trachea was narrowing, it was just below the voice box, the narrowing measured 8mm approx & I needed to see a ENT at hospital.
I was told once they see narrowing of Trachea they will act pretty quickly.
Now it is mid May 2020. Also on CT it showed mild emphysema so more reasons for shortness of breath. See where I’m going with all of this so many other things can make you think it’s was something else.
The Hospital did act quickly, I saw the top ENT & yes had another scope down past voice box this time.
He explained the Trachea has narrowed beIow my voice box & it is about the size of a child’s, 50% had closed up.
It is called SUBGLOTTIC STENOSIS & is rare & how did i get it, don’t know.
People that have had operations & breathing tubes in for long periods of time get it from scar tissue damage.
Autoimmune disease can cause it, Rheumatic Arthritis & damage done to Trachea can also.
So many questions, I didn’t have any of these things. Within 3 weeks I had my operation, Tuesday 16th June 2020. They took 2 biopsy’s then put 4 steroid injections into the narrowing. They then put a balloon in & expanded it to widen it again, the balloon is removed not left in, I stayed in over night because of my heart health.
There is so much to learn about this, it does come back & there is no cure, sometimes the op has to be repeated 3 or 4 times a year. I’m 8 months on now, I’m open & I’ve been having in office steroid injections into outside of my neck by scoping, this is regular it keeps me out of hospital & dilations, 5th injection coming up it’s now Feb 2021. Mine is unknown so is Idiopathic Subglottic Stenosis, I’m doing well & happy to breathe again.
I belong to a group called Living with Idiopathic Subglottic Stenosis.