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Thread: Tracheal Stenosis

  1. #21
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    Quote Originally Posted by DuaneHart View Post
    I also had HUGE outburst of Vasulitis lesions on my legs--some were 3-4 inches in diameter.
    I've had those. Awful. They took a long time to heal, mostly because I was sensitive to all the wound dressings.... If you get stuck, I have suggestions that worked for me.

    Quote Originally Posted by DuaneHart View Post
    I meet with them Friday for education on two different meds they may begin, Cellcept being one of them.
    Cellcept is a breeze. I was on it 2.5 yrs and will probably go back on it after this ctx is done. It worked great and had almost no side effects.

    Quote Originally Posted by DuaneHart View Post
    I am currently taking 17 different meds daily.
    *Gasp*

    Quote Originally Posted by DuaneHart View Post
    I have total trust in my doctors here at Mayo in Rochester.
    That's good news. They have a great reputation there.

    Quote Originally Posted by DuaneHart View Post
    I do not seem to have the sinus, respiratory problems that it seems that most of the other people here seem to have. Mine is mainly the skin problems and feeling like completely sh***y all the time. Can anyone relate to this?
    Yup. I don't have any upper respiratory stuff either (sinus, etc...). Mine is all lungs, joints and skin. The skin is doing okay now. I feel lousy all the time, too. Things can improve. The fact that your Wegs isn't affecting more areas bodes well for you. They'll figure out what to do.

  2. #22
    Doug Guest

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    Duane- In time, you probably will feel better, maybe even great! Continue to have a positive attitude, feel good to know you are receiving treatment at a respected WG treatment institution, and try to be patient with the course of your disease. Each person is unique in how the disease affects him or her, and that means anything we tell you, as weggies, reflects our personal experience but may not, ultimately, reflect yours. May your aches and pains be fewer tomorrow than they are today!

  3. #23
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    Just posting to say that initially, I didn't have tracheal symptoms when I was first diagnosed, - my tracheal stenosis came apparent a few years later, although it was misiagnosed as asthma for 7 years, which was pretty miserable. If in doubt, get it checked out with ENT xx
    Wegeners Granulomatosis diagnosed May 1995. Tracheal Stenosis since 2000.

    Proud mum of 3 beautiful girls, post cyclophosphamide (so it really can happen!) xxx

  4. #24
    Doug Guest

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    Gwenllian-

    Because you were misdiagnosed for seven years with asthma, can you suggest anything that might help others avoid that problem? Did your ENT know you were a weggie, for example? Did the possibility that your "asthma" might be tracheal stenosis occur to you? Did you bring that possibility up with your ENT? What was the doctor's response? I know some doctors don't like to be out-guessed by patients! Was the doctor an ENT, for that matter, or a GP or other specialist? Having been through that wringer, what would you recommend to other weggies with breathing issues to avoid misdiagnosis? I think I understand the symptoms, but I just can't imagine how miserable you must have been until your doctor got the diagnosis right! It's a bit distressing to learn that what didn't hit you (or us!) the first time around might the next time, though I guess I realized that possibility existed.
    Last edited by Doug; 09-08-2009 at 10:22 AM.

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    Gwenllian change your signature to "happy momma of 3 babies", you are an inspiration to all the young ladies comming onto the forum
    Jolanta

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    Quote Originally Posted by Doug View Post
    Gwenllian-

    Because you were misdiagnosed for seven years with asthma, can you suggest anything that might help others avoid that problem? Did your ENT know you were a weggie, for example? Did the possibility that your "asthma" might be tracheal stenosis occur to you? Did you bring that possibility up with your ENT? What was the doctor's response? I know some doctors don't like to be out-guessed by patients! Was the doctor an ENT, for that matter, or a GP or other specialist? Having been through that wringer, what would you recommend to other weggies with breathing issues to avoid misdiagnosis? I think I understand the symptoms, but I just can't imagine how miserable you must have been until your doctor got the diagnosis right! It's a bit distressing to learn that what didn't hit you (or us!) the first time around might the next time, though I guess I realized that possibility existed.
    My experience was quite extreme really. I experienced awful breathing difficulties since i was 18 years old, but i was continually diagnosed with asthma. I told my consultant at the time that i did not think i had asthma, but i was constantly dismissed. I even took family members to my doctors appt to back me up, but to no avail. I looked up tracheal stenosis up on google in the end, and thought I might have that - BUT STILL, my consultant said I had asthma. My doctors even refused to believe I was having a flare up of Wegeners, and I was left untreated until 2006!!!!

    Eventually, in 2005, when I became pregnant - my breathing difficulties got so severe, that I was admitted to hospital. It was actually an anaethatist who listened to my chest and said 'that's not asthma' and within hours, I was having emergency surgery to save me and my baby's life, who was born prematurely as a result.

    I was so devestated and angry by the time i was correctly diagnosed, that i took the decision to take legal action for negligence against the hospital - for which i subsequently won the case, at the high court in london.

    I really hope that increased awareness about Wegeners stops that kind of thing happening to anyone else xx
    Wegeners Granulomatosis diagnosed May 1995. Tracheal Stenosis since 2000.

    Proud mum of 3 beautiful girls, post cyclophosphamide (so it really can happen!) xxx

  7. #27
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    Wow, I am so happy to hear you took legal action. That was so far beyond negligent.

    (BTW-- love your new signature!)

  8. #28
    Doug Guest

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    Quote Originally Posted by Gwenllian View Post
    My experience was quite extreme really. I experienced awful breathing difficulties since i was 18 years old, but i was continually diagnosed with asthma. I told my consultant at the time that i did not think i had asthma, but i was constantly dismissed. I even took family members to my doctors appt to back me up, but to no avail. I looked up tracheal stenosis up on google in the end, and thought I might have that - BUT STILL, my consultant said I had asthma. My doctors even refused to believe I was having a flare up of Wegeners, and I was left untreated until 2006!!!!

    Eventually, in 2005, when I became pregnant - my breathing difficulties got so severe, that I was admitted to hospital. It was actually an anaethatist who listened to my chest and said 'that's not asthma' and within hours, I was having emergency surgery to save me and my baby's life, who was born prematurely as a result.

    I was so devestated and angry by the time i was correctly diagnosed, that i took the decision to take legal action for negligence against the hospital - for which i subsequently won the case, at the high court in london.

    I really hope that increased awareness about Wegeners stops that kind of thing happening to anyone else xx
    Yours is an amazing story! A suit doesn't save you and your middle child the suffering you went through, but I hope the suit serves as notice to health care providers there that half the team is the patient. Whew!

  9. #29
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    WOW Proud MOM! I am sorry your tracheal stenosis was misdiagnosed. I too suffer from tracheal stenosis and after having a trach for "too Long" 7 1/12 months I know what your breathing difficulties were like.

    Each day I talk a walk up a very steep hill just to prove that I am now breathing again. It is such a treat to have the luxury of air. I have recently been told that my WEGS is still active, although I feel great, but the stenosis is a constant worry for me. I will go back to see my ENT just to be sure. Your story helps me know that I am doing the right thing.
    As someone stated in an earlier thread.....(sorry I have not been on for a while and I am trying to catch up) this disease can be lonely.

    Thanks to all of you who share your stories with both successes and set backs. It's nice to know others are in this with you.

    LIsa coffeelover

  10. #30
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    Gwenllian, I am glad that the anesthetist did the exam and noticed no problem in the lungs I know that my hubby does a thourough exam of both the lungs and airway along with a detailed medical history before every procedure. Our youngest son is now into 3rd year medical studies and having me as his "mentor" I try to have him talk to his friends about listening to their patients when doing an exam and piece together symptoms that do not make sense. I often wandered why physicians take so long to diagnose autoimmune diseases when practically all of us sufferers present with a multitude of simillar complaints. One would think that AI would be the first diagnosis out there. What I noticed thru his studies is that the medical schooling greatly lacks in coordinating between specialists and almost never teaches the young med students how to properly interpret someone with specific but not presenting at the same time ailments. I hope that somewheres in the near future there is going to be a strong lobby from the John Hopkins and such all over the globe to strongly address this inadequacy and make sure med students are thought how to recognize the signs of autoimmune diseases quickly.
    Jolanta

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