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Thread: lung issues

  1. #81
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    All the best vdub, when the going gets tough. the tough get going, looking forward to hearing about the new and improved vdub, and seeing a pic of you in the red rocket, take care and stay strong.

    Regards Woz....

  2. #82
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    Best of health to you vdub.
    We will all be thinking of you and will be sending great healing vibes, when you need them
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  3. #83
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    I am wishing you all the best vdub, stay strong and take good care of yourself. We will all be looking forward to your speedy recovery and hearing from you soon.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  4. #84
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    Good luck Mate, wishing you all the very best with your forthcoming surgery.

    Post or whine whever you need to, we all need to get it out there one way or another,

  5. #85
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    Alysia, how does this issue track with what Phil had? Is there any similarity or is it totally different?
    Wegener's (​GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  6. #86
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    Quote Originally Posted by vdub View Post
    Alysia, how does this issue track with what Phil had? Is there any similarity or is it totally different?
    Hi vdub.
    So, as far as my poor medical understanding is: Phil didnt have paralyzed diaphragm. He had, among other issues, pneumothorax which sounds like "the opposite". If I understand correctly, your lung extanded beyond where it should be. Phil's lung collapsed inside. The thorachic team did consider a surgery to "strech" it back up but Phil was too sick in all ways to be able to survive a surgery. This is what they said and he also felt so.
    He also had sats around 90 then down to 80 and he had to increase the oxygen all the time. His lungs were very damaged not only because of wg but also because of the m. Abscessus that he had in 2010.
    They insert many chest tubes to try to inflate the lung back up. But it was possible only half of the way up. They said that a hole in the lungs caused it and we waited to the hole to be healed. In vain.

    My beautiful Phil also had bronchial stenosis. He explained to me that the laser and the cutting, if done, might lead to more and more damaged tissues in the area then to more cutting and make it smaller and smaller leading to an end. This is why he went for dillations.
    BUT the problem was that in 4 out of 5 dillations he got severe lung infections and as a result the infections continued to create more and more damage to his lungs.
    Eventhough we talked here in the forum about taking antibiotic few days before the dillation, and his wg doc also reccommanded it, his previous pulmy refused and Phil ended his last dillation with crazy lung infection on Dec 2013. After that he wrote a letter (I will post it on his thread) to the new pulmy who decided that Phil will not do anymore dillations.
    Phil tought that after all the dillations caused just more damage to his poor lungs.

    But you have subglottic stenosis. I posted on Victor's thread about tracheal stenosis, some info about a surgery that Gwen did. Maybe it might be relevant for you ?

    My advices from my sweetie's experience:
    ask about starting antibiotics few days before.
    Dont allow them to use Fentanyl or hydro morphin as pain killers. They supprese the breathing. This is what killed Phil eventually.
    Will they insert a chest tube to drain the fluids ? If so make sure that they will do it in a CT room and think in advance according to what they see, where is the best location for it. Make sure it will not get stucked by mucous etc. Causing it to stop working.

    I will try to post a picture of the xray of my sweetie's lungs.
    Last edited by Alysia; 02-18-2016 at 12:58 AM.
    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.

  7. #87
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    2016-02-17 13.44.37.jpg

    If you look at the left side up you can see one chest tube and also a bit above is the void where the lung had collapsed. There is also another chest tube more down which, as you can see, collapsed and didnt do what it should. Although its more painful it is better to have a bit wider tube.
    I think someone who understand xray could tell that his lungs were in a bad shape. Cavitating nodulles and damaged tissues.
    Last edited by Alysia; 02-18-2016 at 12:59 AM.
    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.

  8. #88
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    What a well thought out reply and explanation of Phil's situation! :-) That's exactly what I was looking for. Thank you very much! Yes, Phil's issue was quite different from what I have. Nevertheless, I think I can learn from it. Thanks, vw
    Wegener's (​GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  9. #89
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    Vdub,do you know when they plan on the surgery ?
    Alysia,that was a very good explanation, your English has really improved since you first started here !
    Life isn't about how you survive the storm, but how to dance in the rain !

  10. #90
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    VDub,

    I'm just not active on here as much as I used to be so just seeing this. I hope everything goes well to you and sorry you are going through more issues.
    ~ Bob

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