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Thread: Update on pberggren

  1. #2531
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    Phil, you just posted post number 6000 congratulations, sweetie cool
    I think we need a batcake
    Last edited by Alysia; 06-16-2014 at 02:43 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.

  2. #2532
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    Sweetie, I found more new links, so I am going to post them here, first, and then under them, to collect previous links, (from my previous posts on that thread) so you can have it all at one post, nothing to be missed, to prepare for your meeting with your lung doc, and for others around here who might find some of those useful.

    I read in Hebrew site of lung diseases, about new med which is based on blocking the activity of certain protein in the body, which is called: interleukin IL-18. It is a cytokine that promote infections in lungs and other tissues. Then I found it in English:
    Promising new drug target for inflammatory lung diseases -- ScienceDaily


    good article about Bronchiectasis : discussing seriously many options of meds: btw, they mentioned malnutrition as a symptom of it and the advice is to get good nutrition. BMI should be normal.
    Treatment of Non-Cystic Fibrosis Bronchiectasis | Archivos de Bronconeumología (English Version)

    the following links are about salt therapy, which started in Israel :
    http://israel21c.org/health/salt-the...-of-fresh-air/
    What Is Salt Therapy - Salt Therapy

    the next links are collection of previous links that I posted already:

    New advances in the therapy of non-cystic fibrosis bronchiectasis


    Azithromycin for prevention of exacerbations in non-cystic fibrosis bronchiectasis (EMBRACE): a randomised, double-blind, placebo-controlled trial : The Lancet

    in the followong link there is evidence for a device that can help to clear the airways:
    : Triangle Wave, Waveform | Effective Clearance | inCourage® Airway Clearance Therapy
    it looks nice in this video:
    https://www.causes.com/causes/660769...e-vest-therapy


    a new med which was developed in Israel :
    : Glassia - Kamada
    The explanation is this: in some cases there is a deficiency of Alpha -1 Antitrypsin which destroys the lung tissues. In order to know if you have that deficiency, you need to do 2 blood tests: 1. To find if you have that deficiency. 2. To see if it is genetical.
    Now, if it is genetical, then the med that is in that link, is already approved by the FDA for use. If it is not genetical, the med is in experimental use still. but might help as well.
    there is a connection between that defieciency and wg, like in this link for example:
    Wegener's granulomatosis and alpha1-antitrypsin-defici... [Chest. 1999] - PubMed - NCBI


    another link:
    Current devices of respiratory physiotherapy

    another good link with lots of suggestions
    Five Techniques to Clear Mucus From the Lungs
    need to get to each part to learn more.

    if I will have more, I think that I will edit this post so that all the links can be in one post. I will write it as a reason for the edit.

    5 July: adding more link, general one :https://www.thieme-connect.de/produc...s-0031-1279824
    Last edited by Alysia; 07-05-2014 at 06:15 PM. Reason: adding more link.
    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. #2533
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    WOW Alysia, you are a good researcher and a loving friend and we're ALL lucky to have you on our team. I hope and pray that one or more of these drugs and techniques can help Phil to get better.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  4. #2534
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    Alysia is my lifeline....... and so are you Lisa along with everyone else on this Forum.
    Phil Berggren, dx 2003

  5. #2535
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    Quote Originally Posted by pberggren1 View Post
    Alysia is my lifeline....... and so are you Lisa along with everyone else on this Forum.
    Thank you you are my lifeline as well and all of our weggie family here
    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.

  6. #2536
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    Made it Calgary just fine. Alysia did all the driving. She is very tired now and just got up from a nap and now going to have a shower then we will go out to eat. I will finish nebulizing as well. Tomorrow we head downtown to the Respiratory Therapist and then over to Foothills for a few tests and then to see the lung doc. After that we will head to Banff for a few days for some R & R. Then who knows after that.....
    Phil Berggren, dx 2003

  7. #2537
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    I know Alysia doesn't want to post the pics of herself here, but we would love to see some of the scenery that she is enjoying for the first time. Maybe YOU standing in front of a big mountain or lake, or something of that nature!
    Anne, dx'ed April 2011

  8. #2538
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    I will try to get some pics for sure.
    Phil Berggren, dx 2003

  9. #2539
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    Let me tell you how if feels like to be with Phil
    It’s a matter of heart and breathing:
    I will tell you heart to heart
    please don't hold your breath

    he is heart breaking with his struggling to breath
    but he is also taking my breath away
    with his gold heart full of kindness,
    his sweetness and courage

    so in every breath that I take
    I pray to God to help him.

    Please send your prayers for today's meetings. Hoping for good news.
    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.

  10. #2540
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    I'm sending him all my love & best wishes
    And to u you Alysia for caring for him x


    Sent from my iPad using Tapatalk

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