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Thread: pberggren memorial thread

  1. #811
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    Keith, great point, I had not even thought of... This thread leading to Phil's posts ect. Phil lives on here and in heaven... Alysia, you Realy are a great writer! Amazing... Deb, with love, always... Xox...
    Live,love,and laugh...

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    I copy Phil's letter about his ballon dillations which he wrote to the unit where he was treated, after his pulmy passed and he waited to get a new one. I think it contained good helpful info. And also the wisdom and kindness of my beautiful dr. Phil.

    Dear Dr. Tremblay,
    I offer you and your team and all your staff that worked with Dave my deepest sympathy and condolences. Dave is a great loss to so many. And you are right, he cannot be replaced. When I first heard of his passing on the National CTV news on Monday night I was in shock. I couldn't stop crying for a very long time. Even though I barely knew the man I felt so close to him. He made me feel so at ease with my lung problems. I was so blessed to have him on my team of docs and will forever miss him.
    I'm not sure now who I will see for my bronchial balloon dilations but I think I should give you a general run down of my history first. I'm sure you are already going over Dave's patient files but here is my history nonetheless.
    I was diagnosed with Wegener's Granulomatosis in Spring of 2003 at age 26. I was a young healthy male until that point. Onset was very fast and severe over a 7 week period. I had lost about 40lb, nose was totally caked up and plugged, coughing up blood and mucus, trouble breathing, hearing loss, joint pain, etc. I was treated with oral Cyclophosphamide and prednisone. I responded well to treatment but hearing did not return. I got hearing aids in 2005.
    I flared in 2004, 2007, 2008, 2011 and 2013.
    All of these flares but one I was treated with oral cyclophosphamide. Now we are using Rituximab thankfully.
    In 2010 I came down with a bad lung infection that turned out to be Mycobacterium Abscessus Lung Disease. My doctor at the time, Senyo Taboto, Nephorlogist, wrote a paper about me with another resident doctor at the time, Dr. Venkatesh. I found it on Pubmed.
    I was treated for a year on Amikacin and Clarithromycin and also Cefoxitin for the fist 3 months. The M. Abscessus also caused some cavitating nodules in the lungs as well. The WG previously caused some nodules but were not cavitating.
    Unfortunately the Amikcan made me totally deaf and I got bilateral cochlear implants in October of 2011. And at this time the scar tissue in my bronchi also started to manifest itself.
    Dave first saw me in Nov of 2011 and did a bronch to see what it was like. I had a lung infection going on at this time and didn't know it.
    He did a rigid bronch with balloon dilation in Feb of 2012. That was successful and had another follow up dilation in April of 2012 but unfortnately I got a bad lung infection right after but was treated successfully with an antibiotic. I think it was Azithromycin if I remember correctly.
    My next dilation with Dave was in Oct of 2012 and I again immediately came down with another lung infection. This time I think it was treated with Aclavulanate successfully.
    The next dilation was in April of 2013 and yet another lung infection right after. I forget which antibiotic I was treated with this time.
    The next dilation was not a regular scheduled one. I had called in because the breathing was getting worse and I was scared. Dave got me in the following week in August of 2013. This dilation went very well and I walked out a healthy and happy man.
    My last dilation was Dec of 2013 and this was the worst lung infectin I ever had. I started using Aclavulante but by the 4th day I was getting worse so I went to the ER back home in Swift Current, SK and was admitted immediately and treated with IV Ceftriaxone and Azithromycin. I was released a week later and was much better.
    Since then I feel the breathing has not improved to the point it was before the last dilation. I use Combivent nebules at home and also Advair. I find the combination of these helps a bit but not very much. I have also started back on Bactrim Single Strength 3 times a week to see if this helps with the frequent lung infections. Previously I was taken off this because it was thought I may have had interstitial nephritis from the Bactrim.
    My main doctor overseeing the WG is Bonnie Richardson in Regina, SK. She is a Nephrologist and very well versed in Vasculitides. Our concern now is: are these dilations necessary so often?
    The reason we ask this is the fact I have got 4 lung infections in the last 5 dilations. Dave's theory was that I always have a mild infection going on and then the stirring up of things with the bronch just sets things up for the perfect storm for a lung infection. I have to agree with him there, that makes perfect sense.
    I also asked Dave back in August about using an antibiotic for a few days before each dilation to stave off potential infections. He did not like that idea because he was worried that would cause me to build up resistance to key antibiotics that could potentially be life saving down the road.
    At the last dilation he also had a CT ordered of the chest and took a quick look at it before I went under and said there was something new but didn't look serious. I will discuss this with whoever takes on my case. Dave also found some slight tracheal stenosis I believe back in April of 2013 but said it was not serious at that point.
    I feel at this point that I am losing ground with the breathing. Dave wanted me to come back in April for another dilation, but now I feel I want to push that back as far as I can. I almost feel that these frequent dilations may be doing more harm than good. But of course that is why I am asking you and your colleagues. You guys are the experts here. And I trusted Dave 100%, so now I am putting my trust in you.
    I am not sure who will be taking over my care now. I'm sure I will be pleased with you, but I see also Alex and Paul have impressive resumes as well.
    I am willing to travel to Calgary whenever needed, so if you want to see me in person for a visit before I need another dilation please let me know. I understand that you, or whoever you choose to take on my case will probably want to see me in person to go over things with me.
    Again, thank you for your time and I am so sorry for your loss. I was truly blessed to have Dave as my top doc.

    Sincerely,
    Phil Berggren
    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.

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    Great letter by Phil,and idea.Letters can be more effective than face to face consultation.Most docs are swapped with patients,and Clinic time can be curt.Respiratory dilations are usually done sparingly.Sounds like Phil was being cautious for good reasons.
    "You can tame anything,except the human tongue"

  4. #814
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    Thanks for sharing that, Alysia. Phil did a great job writing it and it was interesting to read.
    Anne, dx'ed April 2011

  5. #815
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    Wow
    Very well written. I remember how devastated he was when his doc died.

    Did he ever get a reply from these new people?
    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

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    Quote Originally Posted by mishb View Post
    Wow
    Very well written. I remember how devastated he was when his doc died.

    Did he ever get a reply from these new people?
    Yes. they invited him and dr. Paul Maceachern (Phil mentioned him above) became his new pulmy. dr. Paul is a much better dr. then the one who passed. actually dr. Paul was the only true saint in Foothills Medical Center. he is the doc that I drove Phil to meet on July 13, 2014. he was the one that I called on the corridor when my sweetie felt bad and the nurses ignored him. he was the one who came to the ICU devotedely, consulted with dr. Specks for my sweetie and told us that he will personally call the rheumy who was supposed to be "on the case" but did nothing. he also sent me an email after my sweetie passed. he is a humble dr. truelly caring, compassionate, kind, gentle and professional. he is also very good looking. it was funny how Phil's sister said that there are some good looking docs and Phil's mother said she was impressed by dr. Paul. anyway he is not as handsome as my beautiful stunning Phil.
    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. #817
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    I'm glad he was the best
    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

  8. #818
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    17 months today since my beautiful Phil flied high.. I wrote this for him:

    Sweetie,

    When I see
    YELLOW fields of mustard..
    While driving in the highway
    (spring is already here)

    It reminds me
    of the mustard fields we drove near
    On that sunny Monday's morning
    On our way to Calgary
    You - sitting near me
    Filled me with so much joy
    I was supposed to drive you back home
    instead, I accompanied you
    on your last way HOME

    So when I see it
    I want to pick up some flowers
    to make for you a beautiful bouquet
    just to make you smile
    Your cute melting smile

    When I see
    RED fresh strawberries in the market
    It reminds me
    how I went to buy some for you
    trying to feed you, you ate so little

    and then I want to buy big fresh
    red strawberries
    to wash them, to cut the leaves off
    to put in a nice plate, for you
    with vanilla ice cream beside
    (not as sweet as you are)

    When I see
    BLUE skies, so clear and blue..
    (It is spring)
    It reminds me
    of your gorgeous blue eyes
    I could have dived into them endlessly
    Such beautiful good blue eyes
    Reflecting the beauty of your soul

    and with an endless longing
    I remember how I looked into your eyes
    and you said: "we have each other" ♡

    When I see WHITE linens
    It reminds me
    how you came to me in a dream
    sitting with me on a white bright bed
    Telling me:
    "I want to tell you something - "

    and then I know what you wanted to tell me:
    that you have made it to heaven...
    that you are in peace now
    in the presence of God

    And when I see the RAINBOW
    With all its gorgeous colors
    I know that God allowed you to send me a gift

    a gift of FAITH,

    HOPE,

    and LOVE.

    Thank you, sweetie. I love you all the way to heaven, trillion times & more ♡


    2016-03-02 14.59.58.jpg
    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.

  9. #819
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    It's a beautiful poem, Alysia. Thank you. XXOO
    Anne, dx'ed April 2011

  10. #820
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    Alysia, so beautiful... Wow, you're really an amazing writer! This photo, is very sweet... Phil is the man... Such a sweet man, always the first to want to help... I really miss him here... Wish I was as lucky as the others here that had interaction with him, though I was close! Remember alysia what I confided in you??? Ya, I was pretty close! Alysia, I love you... God bless you... And bring peace to you... Deb... Xox...
    Live,love,and laugh...

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