What is a trach?

[JanW]

I still ndon't see why it is so hard to believe that someone who is world-renowned in his particular (very tiny) medical specialty (throat and nose surgery on vasculitis patients, with a specialty in WG patients), says that he will not operate on anyone who is not in medication-free remission and I think it's really off base then to suggest that this surgeon must not have faith in his own capabilities with this surgery. I didn't get it wrong, because I asked specifically whether he had ever operated on anyone who was on medication for WG (after he announced that the number one qualification was six months med free remission) and he said once in his career he operated on someone who was on 2.5 mg of pred because it was clear that she would never be off pred. When you consider that a small portion of WG patients have this condition (less than 20 percent), and a large chunk of those have it with my severity (not very severe, totally functional nose with an intact tip and collasped bridge), it's just not that far-fetched that a guy who has done 150+ over the course of more than 20 years has only operated on people who are off meds. If he does mine while I'm still on, you all will be the first to know, but that would involve my rheumy moving him off of a position he's pretty firm with.

And I agree with the others that people who are in a medication-free remission are much less likely to post of support boards, particularly if they didn't form relationships here. But that doesn't mean that they don't exist in equal numbers to people who are extremely sick with this disease.

[Sangye]

Many people can't get off low doses of pred simply because their adrenals are permanently dependent on it, not because it would cause a Wegs flare. So they have truly inactive disease but the pred is necessary to stay alive. Such a scenario is not that unusual.

It doesn't make me question his skill or capabilities. I just don't understand the science behind such a decision.

[me2]

When I was about twenty I was diagnosed with Wegener's. I had suffered for a long time and was extremely ill. I was treated with Cytoxan and prednisone for about two years. I was then in complete drug free remission for the next twenty years. I then relapsed and have been struggleing ever since.
So, I am mentioning this so Jack can say he knows of one guy who had a long period of drug free remission.
In spite of years of recent battle with the disease I still have hopes of getting remission again. I think it could happen for anyone. This disease comes and goes in mysterious fashion and doctors are getting better and better at dealing with it. So are we patients.
I had the illness before the internet was created. I didn't meet or talk to another person with Wegener's for 17 years. Talk about lonely.
The first person I talked to was Marilyn Samson the founder of what is now the Vasculitus Foundation. It was so amazing to talk to someone who had the same illness. God bless her for her work on behalf of others with this disease.
We are so lucky now that we here all have each other.

[Lightwarrior]

I agree that we are lucky to have each other. I can't imagine getting through this without support, you were very strong.

[pberggren1]

me2 and Litghtwarroir, that is so true.

We owe Andrew so much for getting this site going and keeping it going. I have found so much support and comfort in this site because of people like you and Andrew. I am going to cry now - I am a little emotional at times. Especially lately not knowing what is really going on with me and planing to go the the Mayo Clinic.

Thanks to everyone on this site for encouraging me and keeping my spirits up.

[Jack]

I am going to cry now - I am a little emotional at times.

Things affects me like that sometimes. It is a combination of the Pred and the continuous underlying stress of the situation. Give yourself permission to just go along with it.

[Sangye]

I can't imagine going 17 years without knowing another Weggie! That's amazing. I went 2.5 yrs "alone" and it was awful.

It's so inspiring to hear of any long-term remission-- drug-maintained or drug-free. Twenty years, wow.

Jack and Phil, I'm constantly in danger of electrocuting myself by crying at this keyboard....

[JanW]

That's truly the wonder of the internet - - connecting people who would be very rare indeed within their local communities.

Always good to hear of others maintaining long-term drug free remissions. My rheumy has several patients like this also, although he cautions that this should not be the goal.

[elephant]

I will do what my wg doctors says to stay in remission. Yes, I am not perfect...still get sinus crap and rinse nose out once a day...I still have night sweats and insomia....but i am in a medicine induced remission. I should be in bed, but I am visinting my sister in Illinous and using her computer. So I have not been able to come on here. Good night.