Stenosis Dilation Dilemma

[pberggren1]

Bob, did your doc at CC say if the Pulmo might do a bronchoscopy?

[Psyborg]

Bob, did your doc at CC say if the Pulmo might do a bronchoscopy?

No she didn't. I'd think that I'd need a driver for that though right? They didn't tell me to bring anyone. (though I probably will ). She basically said that she's not a Pulmonologist, and i needed one to verify what the PFT even showed.

[pberggren1]

No she didn't. I'd think that I'd need a driver for that though right? They didn't tell me to bring anyone. (though I probably will ). She basically said that she's not a Pulmonologist, and i needed one to verify what the PFT even showed.

Ya, you probably wont have a bronch done then right away. The Pulmy will most likely want to review the PFT and your case overall before deciding what to do next.

[Sangye]

If you're tired at 4mg, don't hang out there longer than 3 days. Otherwise it stresses your adrenals too much and you wind up having to go way back up on the pred for a long time.

[pberggren1]

If you're tired at 4mg, don't hang out there longer than 3 days. Otherwise it stresses your adrenals too much and you wind up having to go way back up on the pred for a long time.

Or you could try some grappa. I still have half the bottle left.

[Psyborg]

LOL...I'll take a pinch

I'll take another mg tonight when I get home and switch back to 5 for at least another week. Probably too much stress from going way up for a week due to that rash I had.

[drz]

Glad they are going to follow up on it and help you sort it out. Hope it turns out well for you.

She wanted me to come up to the Clinic to see a Pulmonologist...which I'm set for next week (23rd). She said it could be asthma, but I really think not as it started at the same time as everything else.

They also want another x-ray, which I find aggravating as the chest x-rays are ALWAYS normal for me. I just know that something isn't right, but I can't begin to figure out what it is. Th trachea improvment has helped with some of the raspiness and weezing, but there is more deeper in and I can't seem to get that through to anyone.

[Psyborg]

Well..I'm trying to dose again with Prednisone. I tapered the last dose too fast and the rash returned...lol. That's what I get for second guessing the doctors orders.

It now sounds (totally without any diagnosis yet) like I have minor lung involvement. I was fairly unconcerned but I've gotten 4 calls in the last 3 days from CC so obviously it's serious enough to follow up with. The weird thing is my O2 levels and such have never been low through this. Xrays are all clean. I know it's something going on because I can feel it, especially with exertion. But it feels so minor right now I'm having trouble believing the sudden push for follow up. Not sure if that makes sense. I kind of feel like maybe they stuck to TS as the diagnosis and missed something here maybe?

[Sangye]

Bob, listen to your docs and get back there. Don't waste time. Lung involvement tends to progress slowly but you never know. If it is Wegs, waiting makes it more likely that you'll have to go on the big drugs to control it.

My O2 levels with lungs full of blood were 100% at high altitude. And 100% when they were filled with blood clots at high altitude. And 100% every time they've hemorrhaged since then. They always sound perfectly clear, x-rays either look fine or only a tiny bit of what looks like atypical pneumonia. PFTs are always good. The CT scans show the real deal. That's the only diagnostic test that is reliable for me.

[Psyborg]

I'll definitely do what they ask. It just struck me a strange since they kept saying "Oh it's not your lungs, it's the stenosis." Continued even when the stenosis reversed it self a bit, but then they got concerned with the abnormal PFT. They seem reluctant to point at Wegs too, but I know this raspy breathing started at the same exact time as the wegs.