Breathing Problems -- Where's It Coming From?

[JanW]

I am launching this thread in my new official position as subglottic/tracheal stenosis nag. Yes, I know that there is a tracheal stenosis section, but some of my new WG friends may never had heard this term or may not know that the asthma or brochitis that the GP has diagnosed might actually be a windpipe problem that he or she is not aware, and is not aware is symptomatic of WG.

My story briefly is that I woke up one morning in 2005, and immediately realized that something wasn't right. In a couple of months I was diagnosed with adult onset asthma. Fast forward to four years later (asthma not much improved despite many meds, allergy shots and reflux meds...only thing that seems to work is pred...first clue), and a throat CT shows a narrowing of the windpipe. Pulmo then orders a follow up on the radiologist's suggestion that WG be explored, and dismisses it because on chest CT the trachea looks clear (for those following this still -- the trachea and the subglottis are not the same anatomy). Six months, one saddle nose and one visit to WG expert ENT made clear that not only was more airway closing, but if it closed a little more it would not be "compatible with life." Obviously, by that time I had a rheumo in on the care and the official WG diagnosis was made.

I had the surgery done yesterday (a balloon dilation with special incision that this doc and two others in the country do), am home today and feeling 1000% better. Not even a sore throat. So if anyone has questions for me about breathing problems, ask here. And as Sangye suggested, I will try to get the other doc's names for our members around the country.

[elephant]

Jan thanks for starting this thread. Again I applaud you! So glad you are better, it is a new beginning for you. :)

[LilyPony]

Jan, thank you once again. I'm starting a notebook for the apparently very long medical journey I'm heading on.

[Sangye]

Great idea for a thread, Jan. I keep meaning to ask you if you'd done pulmonary function testing (PFTs) anywhere along the way. If so, did they show upper airway restriction? Can PFTs differentiate between asthma and SS, or hint at SS in any way?

[JanW]

They do more than hint, Sangye, they SCREAM! if you look at the flow volume loop, it will show where in the airway the obstruction is occuring. Unfortunately, this is a small diagram at the bottom of the page. The charts that show your response before and after albuterol are the top part of the chart. Although I got little relief from the albuterol, both pulmo and allergist missed this multiple times. I probably had these tests done once or twice a year, and it was on the basis of this test that my asthma was diagnosed. My ENT was the person who told me about the flow volume loop. Easy tests for the asthmatic to do at home: get a peak flow meter (your pulmo should be instructing you to use this every day anyway). Find out from your pulmo what your peak flow should be for your weight and height. Mine was 400. (I am 44 years old and weigh around 125) I never got above 250, and more recently was at 150 (that's when I stopped using it -- got scared). I just did it today 24 hours post surgery -- I'm a perfect 400.

Another test is how you wheeze. If you wheeze when you exhale -- asthma. Wheezing when you inhale -- investigate this. There are sites on the internet with the sound of an untreated SS patient breathing. Listen and learn. I did and it still took six months and a hurting foot for me to take the proactive steps and get this straightend out. I am now amazed that I lived like this for so long.