lung issues

[Middlesista]

Glad to hear your appointment is Monday .... Work on getting a plan in place and move forward in a positive direction

[renidrag]

Hope things go your way Monday, we are all on your side and will be thinking of you. Best to you.
Dale

[Pete]

Hope all goes well tomorrow, Vdub!! Let us know what happens.

[Alysia]

Good luck tomorow vdub. Ask him to consult with dr. Speck at mayo if needed. I have his contact details if you want.

[vdub]

Wow, so many friends! Thanks, guys -- I appreciate the well wishes and will be certain to let you know what the outcome is. I don't actually expect much from this apt except to be scheduled for more tests. Its going to take a while.

[Debbie C]

Wow all this waiting has made your hair turn grey !!! Good luck tomorrow, will pray they find out something. Can you take a copy of your x-ray or that scan that you showed in the beginning of the thread so he can see what was up way back when ??!!! Let us know when you get home.

[Lilly]

Hi Vdub, So sorry about your lung issues. I am having problems in both areas myself. But mine are a bit different. (so far) I have had "traveling lung infections" for right at a year now. Dr. just treated with back to back antiobiotics. Nothing was working. So did bronchoscopy and found out I had MRSA. So treated that. It did help for awhile...(they always do) but my SOB and night wheezing are starting up again, and plus I have been very hoarse for the year also. Last month I broke out in a rash on my legs and ankles, looks like red dots all over, some larger than others. I assumed a flare, because that was always my MO when I was having a flare during the first 10 years of having wegs. But my new Rheumy was taking lots of precautions before he wants to diagnose a "flare". He sent me to my EENT to scope my throat because of my being hoarse all the time. EENT said "inflammation of unknown origin" So Rheumy put me on 40 prednisone, I've been on it I guess, close to a month.....Getting the MOON FACE!!! So now Rheumy ordered a CT of throat and chest. I hope to get those results today. And on top of it all, last week I got a UTI with lots of blood cells in it. I haven't had problems with my kidneys before, so I was afraid. My cultures came back with positive for UTI, and E coli. So now I'm just playing the "waiting game, as they get results of my CT scan of throat and chest. Its frustrating, so very frustrating isn't it? I hope you will get some answers soon. I feel like all of us are just waiting around, being studied by the doctors, because they really cant understand what is going on and why.....they can only treat the symptoms....and sometimes I just feel like a freak of medical nature, because doctors just do the best they can, trying not to give us too many meds, infusions, etc. Well, got a bit long with my post. I will be seeing how you are doing, and praying you will be getting better soon. Blessings,.......

[debra]

Lily, hi... I hear ya Lily... At least you're doctors believe wegeners exists! Mine say its to rare! Rare my a**!!! Lily, curious about the throat issues. Has anyone told you, you're voice is different? This is what I'm getting for the last year or so? Being told my voice is completely different. I agree it is. My doctor, regular primary, could see changes even in my throat? Tonsils ect. But, oh no, wegeners is to rare, so... Lily, good thing I've learned patience, never knew I'd need so much... Lily please post back and let us know, how its going... Nice seeing you, again... Deb.

[Middlesista]

Lily - sorry you are hitting a bump in the road but it sounds like you are doing all the right things - still stinks that this is happening to you. Once your team has all the info they need they will get you back on track.

Vdub- thinking of you

[Alysia]

Lilly and vdub, dont allow those docs to let you wait. Wait for what ? For worse ??? Just demand diagnosis (wg, we know what is the source of the inflamation) and treatment asap.
Lilly, in the years that I was smoldering before the acute onset, I was hoarse. Not any more since rtx.