User Tag List

Likes Likes:  0
Page 4 of 4 FirstFirst ... 234
Results 31 to 34 of 34

Thread: Grrrr!! Medical Mistakes

  1. #31
    Join Date
    May 2014
    Location
    Delta, BC
    Posts
    578
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    Jacquie, you are a good detective/researcher/librarian! I'm glad you're getting to the bottom of things... Slowly but surely. I'm also hopeful that the IGg issue could help Phil as it sounds as though some of the issues/infections are similar.

    I'm curious, forgive me if I've missed this somewhere, how did they decide you don't have Wegs? I had it suggested and supposedly ruled out a number of times over a number of years before they found my stenosis and worse inflammation in my nose and throat and then decided that I do have it after all (according to the ENT. Everyone else is treating me for it but not coming right out and saying I have it, then referring to 'the Wegener's' as if it's been confirmed. (?!?) so I'm wondering what made them decide for certain that your issues are not caused at least in part by WG.

    I don't know whether this will be helpful, but I have had all of those same pulmonary function tests over the years, and the spirometry was always a bit off (something about the inspiratory loop flattening, which if I understand correctly means that my inhalation was somewhat restricted). This was reported to be evidence of upper airway obstruction that nobody ever really explained... It was treated as mild asthma with salbutamol, which seemed to help when I had mucous stuck in my throat and trouble breathing. It wasn't until three or four years later that a new ENT found the subglottic stenosis, which must have been what the obstruction was all along. (Unless it was just one of the globs that got stuck).

    sorry for the grossness but I guess with the mucous and globs it may help others to be specific/descriptive.... Yuck! (Btw, the guaifenesin helps me wth that too.)
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  2. #32
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by BookNut View Post
    Phil,
    The long term antibiotic treatment is something that is often prescribed for breathing and sinus problems. It is also often prescribed for COPD. My pulmy informs me emphatically that I do NOT have COPD, even though it was there in my online chart. BUT, he did say it might be helpful for my current problems. The ENT said the same. It is 500 mg tablets three times a week of Arithromycin to start with. After a period of time, we switch to a different antibiotic within that particular class of antibiotics. Macrolides...or something like that. They have been found to have anti-inflammatory properties that help in cases like mine.
    Phil, do you hear her ?
    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.

  3. #33
    Join Date
    Feb 2013
    Location
    Near Rochester, NY
    Posts
    699
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by pberggren1 View Post
    What therapies have you tried so far for the bronchiectasis?
    Yes...brochiectasis is lung damage that can be brought on my a number of "injuries", including those you mention and cystic fibrosis. The bronchiectasis that was revealed by a CT scan awhile back is very mild I am told. I take mostly asthma meds and allergy meds. The usual...zyrtek and singulair. Then I use Symbicort twice a day. I have albuterol in a nebulizer for asthma flares. Like right now I have to use it every three hours. Once the pred taper kicks in, I wil no longer need it. Although the wheezing never goes away, even with pred. I have tried budesonide in a nebulizer, but it seems to result in all the mucous drying up and plugging up the lungs and sinuses, and then I am really in trouble. I also started betamethasone in my twice a day sinus rinse. That did wonders....for awhile. And then it seemed to plug me up the way the budesonide does. I think I will try it again....but only about every three days and see if that works. I also have a flutter valve that I tend to forget, since I don't see that it helps. But my pulmy is alwyas nagging me to use it.

    One thing that scared me in the article I read re IgG2 deficiency.....The article seemed to be directed to physicians, and it made a statment like this. I don't have the exact quote, but it was basically "Don't underestimate the possibility of death in patients with this deficiency." I suspect that the reason might be that it seems to take a long time to diagnose it.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  4. #34
    Join Date
    Mar 2009
    Location
    Swift Current, Saskatchewan, Canada
    Posts
    6,076
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default

    That last statement is a bit concerning for sure. I will have to ask my docs about the IgG. I use combivent maybe a couple times a day. It doesn't seem to help much at all. The only thing that seems to help is frequent nose irrigation and nebulizing saline.
    Phil Berggren, dx 2003

Page 4 of 4 FirstFirst ... 234

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •