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Thread: 29 years survivor of WG; 11 years survivor of bladder cancer

  1. #11
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    Quote Originally Posted by willsy View Post
    Needless to say I am now written up in the medical journals!!!
    Always nice to have a celebrity on board in case we need one some time! LOL!

    Glad to hear your story!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  2. #12
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    Wow, sorry to hear you got hit so hard by Wegs & cancer. You sound like strong person, which is awesome. Even though it really sucks to get Wegs, it does help us to better understand our inner strength. do you agree? Even though it can be a rough ride, it does force us to grow as persons and I feel it has helped in better understanding other people too.

    Best of luck to you
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  3. #13
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    Quote Originally Posted by willsy View Post
    Hi Alysia - My total L lung collapse 29 years after WG diagnosis was a source of great interest among the thoracic unit at Adelaide's Royal Adelaide Hospital. Initially the drs were not sure that they were looking at a lung because of the way WG had distorted it. Several probings led to cave like dead ends then the very small probe began to enter an airway. My drs used a small balloon to coax an expansion of the narrowed airways. In doing so they released a huge amount of "muck". At the time my lung was silent eg I wasn't coughing. The procedure meant a general anaesthetic as the patient is not allowed to cough. The results were astonishing. I had lived with an upper L lobe collapse for 29 years and with advanced technology part of that collapse had inflated on a CAT scan in 2016. I went through our summer without my puffers but now that the weather has cooled, I need them. I am uncertain whether my current shortness of breath is a signal that the airways are closing again or whether my symptoms are a reflection of age. I will go back for a repeat of the above procedure in June-July and I suspect this will be a regular investigation. Needless to say I am now written up in the medical journals!!!
    Thanks for sharing. I am glad they were able to fix the lung collapse. Do you have a link to the article about you ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  4. #14
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    Welcome Willsy.
    You sound like a true fighter!
    Diagnosed April 1995

  5. #15
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    Willsy,
    Your amazing story promps me to ask how long we can live with GPA in general? I was diagnosed a year ago, but had symptoms for about 2 years before that. I am 75 years old and, like others, felt that I had lead a fairly healthy life. My question is this. My mother lived until 103. Am I likely to make that age or will this disease or its drugs get me sooner? Appreciate any feedback! Thanks.

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  7. #16
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    Quote Originally Posted by PCrowle View Post
    Willsy,
    Your amazing story promps me to ask how long we can live with GPA in general? I was diagnosed a year ago, but had symptoms for about 2 years before that. I am 75 years old and, like others, felt that I had lead a fairly healthy life. My question is this. My mother lived until 103. Am I likely to make that age or will this disease or its drugs get me sooner? Appreciate any feedback! Thanks.
    Few people make it to 100 regardless of their health. But taking good care of yourself will probably help offset some of the negative influences of the drugs and disease. Having Wegs tends to makes us more appreciative of life so you will probably have more joy in your life regardless of how long you live.
    Knowledge is power! Wisdom is using it to make good decisions!

  8. Likes Arleta, Pete, Alysia, Dirty Don liked this post
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