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Hello all,
I thought I would send an update. Almost everything I have learned about WG has been on this website so hopeing someone can learn from me.
First of all I already was scheduled to come...

Hi Brooke,
Good luck on your appointment. I'm going to just miss you
I go to Mayo next week . I start my first round of RTX. How did
The RTX go for you? Did you do it at mayo? I
Doing my first...

Hello All,

I hope everyone is doing well. I have not been posted in a while but I have been reading here and there.
I have been to Mayo a few more times since my last post. I had the throat...

Hi Bob,
Sorry it's taken me so long to respond. I am so glad that you didn't have to go through with the surgery. :rolleyes1:
Are you still wheezing?
I saw my regular Doc yesterday and after...

Hello Bob,

I'm confused, they didn't do anything while you were in surgery?

Jodi

Hello all,

I have had a crazy week and wanted to share with everyone. I had my surgery last Wed April 6th. We came home the next day and everything was good. I felt good friday and Saturday...

Great news! I hope you continue to feel good!

Brooke-I am on prednisone still, 10 mg and Methatrexate. Dr. Kasperbauer also put me on Keflex. I go back in 6-8 weeks for recheck and I will see Dr. Specks at that time too. He will decide then...

Hello All,
I am back home from Mayo! The surgery went really well. I can breath so much better. Yay!

Thank you all for all the good luck wishes.
It turned out to be a really long surgery...

Hello All,
I am back at Mayo and scheduled to have surgery tomorrow on my throat. I am so excited, but nervous to be having the surgery done. I have read all the posts on this site about Treacheal...

Thanks all, yes it is great to see one of the "greats" when it comes to Wegeners. Dr Specks ok'd for me to have the throat surgery but I need to get the infections under control first. He put me on...

Hello all,
I had a great day at Mayo, by 9 am I had blood drawn, urine sample done and a chest xray. I then went to pulmonology floor to do the dreaded breathing tests. Ugh! After that, I met with...

Hi Lisa Marie,

I feel your frustration! The first time I went to mayo I didn't have a Wegs diagnosis and I was really frustrated because the docs said I had severe Acid reflux and they put me on...

Hi LisaMarie,
How is it going at Mayo? I have appts on March 16 and 17 at Mayo. I am seeing Dr. Specks and Dr. Kasperbauer. Dr. Kasperbauer is the throat specialist. Who are you seeing? I hope...

HI Simon,

I have been on oral Methetrexate for a year now. I started off at 10mg week but am now up to 20mg a week. I take mine on Saturday night at bedtime. When I first started taking it I...

I have been intubated for surgery serveral times but they always use a LMA tube, this tube is much smaller and doesn't go as deep. As far as the trach goes I have come really close to having one...

I work in Dentistry and have for 20 yrs now. I was a Dental Assistant but now am an Office Manager. When I was assisting I noticed that certain cleaners, chemicals, sterializing procedures really...

Hello all,

I now carry Hud's Obit in my purse to remind me how devastating this disease can be. Rapid City is a small town and no we do not have a Vasculitis center. Most of the Doctors here...

Hello All,

I read my local paper's Obituaries today and their was a 36 year old male who died of Wegeners!

The obit read- "he waged a brave and courageous battle against a rare disease known...

Thanks Sanyge for the very valuable information!

I used the Neilmed for years and then my ENT told me about a product that Waterpik makes. Its called Sinusense and it is like the Neilmed bottle but it takes batteries and it pulsates! It's great...

I would also be interesting in the information you have gathered about disability. I currently work full time but recently asked my boss if I could take a day off per week, to rest and go to Dr's...

Thanks Mark for the info on Mayo Rochester. I called to get an appt right after I read your post. Dr. Specks appt coordinator had left for the day so they are calling me back on Monday. I hope they...

Hello,

I like Sangyes quote that Mayo Arizona was amazing but JHU was even better. I feel bad now because about a year ago I went through the hoops and scheduled at JHU in Baltimore. Before I...

Thank you all for the info. Yes I do usually have lab work done about every 3 months. The only test I took at the Dr yesterday was a Urine test, no blood work was done. I do have a Rhuemy but she...