Way Sick

[DEE]

I would let them know NOW

[Daggar]

Call your doctor and explain your issues ... if he doesn't seem to respond ... get to your hospital's ER.

[Sangye]

Bren, that doesn't sound like a cold at all. It sounds like major Wegs activity. Bleeding in the lungs will feel exactly like pneumonia. It can look like pneumonia on x-ray, too. If you go to the ER (and you should) they need to do a CT scan to get a better idea of your lung situation.

Also, if you're going to Mayo anyway, I suggest you establish yourself as a patient of Dr Specks (or any of the Wegs specialists). He can come up with a treatment plan that your local doc can follow. (If you only have your local doc consult with him, you are left to the whims of your unskilled doc.) It gives you direct access to the Mayo doc, too. Elephant and many others do this and receive excellent care.

[marta]

HI everyone, I have a few questions. I m new to the blog and a new to Wegner's.. I have been treating for 2 years I have limited Wegner's and subglotic stenosis . my Rhym Dr has only seen one of me and had not treated that person very long before he left that Clinic.. So I asked him if he would talk with Dr Speck he was agree to that so I will be heading to Mayo on Feb 28th. and seeing Dr Kaslebauer in ENT as my Subgotic area is closing up I have had 2 surgery's. so my Dr took me off all meds was on Meth and Cytoxan.. I have come down with a whopper of a cold in my chest and ache all over like I got run over by a steam engine, ears are playing some kind of games when I move my eyes .. I have had it for 3 days don't seam to be getting any better. cough all night have had 3 nose bleeds in 24 hours that last from 10 min to 30 min. we can not get my blood pressure under control at all. it was 159/99 to 111/80. not sure if I should let anyone know or let it run its course any advise would be so grateful!!! Thanks

Bren, I just read this and started crying because I so know what you're feeling right now. I was in the same boat and also feeling uncertain as to what to do next. My family convinced me to go to Emergency and it was the best thing I ever did, so that's what I would suggest to you. Go to emergency, bring your meds and your med history with you, and tell them what you're planning on doing with Mayo, at the very least they can ensure that nothing fails on you in the meantime, at best they might hook you up with someone in your area who has experience with this whacky disease. Or they can get you into Mayo sooner based on what's going on in your body. Take care of yourself. Please!

[Natalie]

Hi Bren , I havent meet you yet , Im Natalie I drop in every now and again to have a read up on posts and see whats happening with everybody and read the new members stories . It sounds like you do need some medical attention right away all your symptoms sound all to familiar . Take control and get some medical attention ASAP .

[LisaMarie]

Bren
If you have not already seeked Medical attention ...do so now...PLEASE...I will be at Mayo seeing Dr specks 2/21-2/25/11 is the plan...I see him 2/21 at 1400...so if you want I will keep you posted...Mark has already seen him and said to bring your own copy of med records because things get lost and mis placed soo if you can send a copy and keep a copy.......i was hospitalized in September with resp failure and somethiong unidentified in my lungs ..I almost died and like you thought prior to going to the doctor it was just a side effect of the drugs...and when he wanted me to make the referral to at pulmonary doc ...i didi not think it was that big of a deal...i ended up at the specialist office with Sats of 83% and spent 14 days in the hospital and am still recovering ...so please go to the ER ...Keep us posted

[coffeelover]

Bren,

Are you going to the Mayo in Rochester MN. I would call them and tell them you need to get in sooner. Be forceful...they will do it.

Sangye,

So glad you are feeling better.
LIsa (just catching up to these forums)

[Jack]

Sangye - unless I've missed it somewhere, I'm in need of an update!
How are things progressing now with this round of rtx, better or worse than expected?
How are you getting on with the wedge bed? Is it the success you hoped for?

[Sangye]

Rtx treatments : It's very unpredictable. I'll be doing okay one minute and the next I'm shaking and extremely weak. Overall it's been much better not having the weekly infusions, though. That was like going through the slapping machine before I even got back up on my feet.

I'm not struggling emotionally with the extreme physical weakness this time. I know it only lasts 6 weeks, and since I got my important stuff done ahead of time I'm not stressed out about not having energy. It's easier when you know what to expect, even if it's unpleasant.

Wedge pillow: I wish it were wider. I have a hard time getting comfortable or turning over. Gotta be very awake to do it because I have just enough room. I'm not always comfortable. Last night my neck was hurting and I removed the wedge pillow. Boy, my airway closed right up and I broke out into a huge sweat to boot. Back on the wedge! Because the rtx is wiping me out, I can't tell yet if the wedge is giving me more energy.

[Brooke]

Sangye - Can you tell the difference between the Rituxan Infusions? Can you tell a difference in getting 4 infusions in a month vs 2 ? I might be getting the 2 infusions this time.