I understand. The thing is to have compassion for yourself, that you are suffering with this stinking disease, and at the same time remember that you have it very good. You could have Wegs in a 3rd World country.
I understand. The thing is to have compassion for yourself, that you are suffering with this stinking disease, and at the same time remember that you have it very good. You could have Wegs in a 3rd World country.
Thank you for all the good advices
You are probably right about that! But actually, I think I read somewhere that autoimmune diseases isn't very common in 3rd World countries. At least if you compare it to 1st World countries. One theory is that we are too hygienic..
sounds logical
Hi Elena, I was watching Oprah one day and she talked about Norway. You guys have one of the most desireable places to live because of education, health and time off ...ect. It just makes me want to come and visit!
Elena - In response to your question about stents, I know that docs here for the most part do not place stents because there is some concern that granulomas can grow around them, leading you to be much worse off that before. So, if they talk about a stent, always ask about the risk of having a foreign body placed in your body if you have an autoimmune disease (for instance my ENT will not repair my saddle nose using any synthetic products (although he could) but rather, will take cartilage off of my own body. The theory being that introducing something foreign into our bodies (in all but the rare instances), can dredge up inflammation that would be better off laying dormant.
And I just caution you not to assume your surgery will be anything like mine. Only three docs in the world do the surgery the same as he does...please make sure that you know exactly how they will do your surgery. It is a serious surgery.
Yeah, I know Norway usually scores pretty high on those lists. I know that the healt care system i the us, for example, is very different from here Still a lot of people always find some things to complain about..
Jan - I'll make sure to ask my docs about that! I won't need one though, if I'm lucky Your surgery does sound much the same as what little I have heard from my docs, but I'll find out more about it anyways. And I've still got my mum with me to the hospital, and she's always asking questions about everything. I'm getting the best surgeon, in this field, in Norway, so at least I'm pretty sure he knows what he's doing.
Keep asking questions Elena and don't be afraid to speak up to the medical staff. Wegener's is a rare disease and you can't assume that the doctors you will come into contact with will know much about it. I'm afraid that many of us have found out that you have to become your own expert so that you can spot when things are going in the wrong direction. With any luck you will have at least one doctor who is a specialist in vasculitis and this is the one who should make all the final decisions.
We are lucky to live in the age of the internet which allows easy access to information on all the various drugs and as patients, we often have more time to read up on this stuff than the doctors do!
Hi Elena I too have stenosis in my trachea and also in both bronchis. While in the hosptial the thoracic surgeon tried to put stents in for me after many discussions etc of what to do and unfortuneatly after 2 hours of trying he was unable to get it in (it was what they call a Y stent) specifically made to fit but it was just too narrow an area and could not get it in. Because of all the trying to get in it irrated my trachea and caused a lot of swelling in an already small area and I spent 5 days in ICU as my breathing was almost non existent. As the swelling went down it improved. I had about 7 dialations from Jan. thru to May and then did 3 months of cytoxan. Last cytoxan treatment was July 22. Things seem to be regressing and I am having another bronchoscopy and Dialation on Oct 5 and then will be doing another 3 months of cytoxan. I was really leary of the stents and in some ways I am glad they were not able to get them in. I have heard alot of negative, that the stenosis granulomas can grow over them, they can cause infections etc. Don't know how it would have worked for me but I have to look at is as a sign that it wasn't meant to be.
Take Care. Cathy
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