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Thread: wheezing stenosis?

  1. #51
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    Quote Originally Posted by Kim McCormack View Post
    Hi Mrtmeo (again, my stenoses are small and many. Certain lobes have gone but it has been over a very long period of time (decades) and so the working lobes have kind of overcompensated and got bigger. There has been no decline over say six or so years and I do everything I can to keep it as open as possible. I work in a quite demanding job full time and the only indication to the outside world is that I get puffy going up stairs and if I am exherting. My breathing sounds a bit strange and I have to be so, so careful with chest infections. My worst problem with chest is often getting docs to take what I am saying on board. I often end up in confrontation just to get properly treated.
    It is so sad that just getting drs familiar with vasculitis for earlier diagnosis is hard enuf without fighting pride and arrogance to get treated properly.

  2. #52
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    Exactly! The renal team are so fantastic and a brilliant support. They have a modern outlook and they involve me in everything. The pulmonary just add worry and fear to me with the absence of anything coming close to care or support. You are right they will not communicate with experts in this area and I am not given any explanation as to why. They will barely communicate with me.

  3. #53
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    Quote Originally Posted by kmac14 View Post
    Exactly! The renal team are so fantastic and a brilliant support. They have a modern outlook and they involve me in everything. The pulmonary just add worry and fear to me with the absence of anything coming close to care or support. You are right they will not communicate with experts in this area and I am not given any explanation as to why. They will barely communicate with me.
    Thank God for sites like this and the vasculitis foundation support for helping us learn everything about our disease in order to get proper treatment.
    If Drs could only treat this disease with the same seriousness that they give to Cancer, we would have better care.

  4. #54
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    Quote Originally Posted by kmac14 View Post
    Exactly! The renal team are so fantastic and a brilliant support. They have a modern outlook and they involve me in everything. The pulmonary just add worry and fear to me with the absence of anything coming close to care or support. You are right they will not communicate with experts in this area and I am not given any explanation as to why. They will barely communicate with me.
    i have heard the same thing about pulmonolgists in general, and experienced it. I wonder why. There must be some good ones out there.
    Anne, dx'ed April 2011

  5. #55
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    Quote Originally Posted by annekat View Post
    i have heard the same thing about pulmonolgists in general, and experienced it. I wonder why. There must be some good ones out there.
    Mayo in Phz, Dr. Vaszar, great pulmy. I know way more about lung functions than I ever wanted to know...it's all good! And he's funny! LOL!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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