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Thread: pberggren memorial thread

  1. #351
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    Quote Originally Posted by mrtmeo View Post
    Wow, Alysia,
    Phil looks really good in those picks.
    Phil allways looks good. we have the say: "you don't look sick". even when he was in bad shape he still looks good. here is a pic after he had chest tube number 7 inserted and was already on Oxygen 12 or more. when he was at the ICU I didnt take pics of him.


    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. #352
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    he was smiling a lot, even when he was in pain or working hard to breath. never complained. allways grateful. very brave and inspiring.
    this is a pic from the same day:

    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. #353
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    to those on facebook, video of Phil singing to me "you are my sunshine" at Aug 29, day before I went to Israel. (I came back at Sep 16)

    https://www.facebook.com/video.php?v...type=2&theater
    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. #354
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    Quote Originally Posted by mrtmeo View Post
    What happened that brought him down so far in the ICU?
    that is a very good question. I am not sure. at the beginning there were ups and downs according to the collapsed lung which was up and down. then about before chest tube number 6 he started to become more and more SOB. from that point there were better days but his shortness of breath became more and more severe and he needed more and more oxygen. the triger for the ICU was lung infection of Ecoli and yeast. I can't believe the nurses were so dirty not to wash hands and touch his nebuliser or oxygen without gloves but I cant see any other way that Ecoli entered to his lungs. then they couldnt tell if it is WG and/ or infection and/ or somthing else. in restrospect I now think that it was also the Fentanyl (opiod, narcotics, for pain) that made him more and more SOB. he became more and more SOB after procedures in which they encourage him "to use the pain button". I am raging about it. how I wish I knew it on time to save him. I think that evntually this is what killed him because the white blood count showed at that day normal numbers and wg was treated by pred rtx and Igiv and the lung was up.
    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.

  5. #355
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    some lessons that I learned in the hard way: if anyone here can use them to save life, please do.

    it means that you must insist on things. being assertive. I fighted. the staff saw me like a mediterranian wild girl (and there was the news on TV about war in Israel, which didnt help my reputation as peacemaker). I tried to insist on the following (but the Fentanyl, which I didnt know was in issue) but they didnt listen to me:

    insist on being in a clean room. no more roomates. touching the patient only with gloves after washing hands. especially when touching things that are connected to breathing like oxygen and nebuliser.
    just imagine that about 4 times a day at the ICU I was asking staff to put on gloves b4 they touch my sweetie or his other things. I also needed to ask them to change the nebuliser and oxygen lines after starting antibiotics, not to bring back the germs. I dont understand why it was not part of their protocol. shame on them.

    NEVER USE Fentanyl or ather pain killer that suppress the breathing.
    in fact ASK ABOUT ANY MED, WHAT MIGHT BE THE SIDE EFFECTS.
    we did it about couple of antibiotics but since Phil was on the Fentanyl since day 1 from the ER, it was kind of obvious going with it. how I wish I knew then what I know today.....

    dont let an unexperienced enthusiastic ER resident play on your body. ask for an expert.

    insist on vasculitis expert being involoved since day one, eventhough it doesnt look like WG actvity. with this nasty disease you can never know. I think in retrospect that the collapsed lung, because of hole in it, might be the result of WG smoldering or even flaring in a particular way. like the hole we have in the saddle nose, it makes sense that there can be also holes in the lung as a result of WG. also vasculitis expert can give good ideas like the Igiv IV which we got after consulting with Dr. Speck. in retrospect I wish we were consulting with him earlier, like Lisa marie on facebook suggested. Phil trusted his docs.

    so next lesson is: NEVER TRUST YOUR DOCS. search and ask and challenge them and ask for more opinions.
    you can be kind and polite but allways be suspicious.

    if I forgot something I will write more later.
    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. #356
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    Quote Originally Posted by Alysia View Post
    that is a very good question. I am not sure. at the beginning there were ups and downs according to the collapsed lung which was up and down. then about before chest tube number 6 he started to become more and more SOB. from that point there were better days but his shortness of breath became more and more severe and he needed more and more oxygen. the triger for the ICU was lung infection of Ecoli and yeast. I can't believe the nurses were so dirty not to wash hands and touch his nebuliser or oxygen without gloves but I cant see any other way that Ecoli entered to his lungs. then they couldnt tell if it is WG and/ or infection and/ or somthing else. in restrospect I now think that it was also the Fentanyl (opiod, narcotics, for pain) that made him more and more SOB. he became more and more SOB after procedures in which they encourage him "to use the pain button". I am raging about it. how I wish I knew it on time to save him. I think that evntually this is what killed him because the white blood count showed at that day normal numbers and wg was treated by pred rtx and Igiv and the lung was up.
    Alysia,

    All plastics are porous and this is why they can't truly sterilize them unless they dipped it in iodine just before placing it in the tissues.

    What most likely killed him was the opiates.
    Opiates suppress the respiratory drive and so do most psychiatric class meds, such as benzodiazepines, ambien, etc.
    Combining those is what kills so many celebrities and millions of others per year.

    Keeping our vitamin D levels within the optimum range of 60-80 ng/mL can prevent infections, cancer, flu, colds, etc. I have seen it with many and it's in the literature.
    Anyone with an autoimmune disease or cancer should keep their D levels in the optimum range.
    D is our immune system modulating hormone and we can only get it from the sun between April thru August in the north.
    Unless you are near the equator, we just can't get any D from the sun in the fall thru spring months.
    This is why it is called the flu season because everyones D levels drop during this time.

    However, it is very important to note that Vitamin D can get to toxic levels if taking too much.
    I have found 48iu's per pound of body weight works for all my family and friends, but others may want to find what amount works for them by getting tested every 3 months.
    https://www.vitamindcouncil.org/
    GrassrootsHealth | Vitamin D Action - GrassrootsHealth | Vitamin D Action

    Dr Holick found that the more deficient in D, the genes express negative effects and with sufficiency, the genes express with positive effects.

    Did he have sepsis at all?
    Last edited by mrtmeo; 10-14-2014 at 05:15 AM.

  7. #357
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    Quote Originally Posted by Alysia View Post
    he was smiling a lot, even when he was in pain or working hard to breath. never complained. allways grateful. very brave and inspiring.
    this is a pic from the same day:

    OMG, he looks so good!
    Life is not fair.
    Why do they always take the angels away from us?

  8. #358
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    Alysia,
    Lung perforation can definitely happen with granulomatosis.
    Here is some literature on it
    Pulmonary surgery in immunosuppressed patients

    It is difficult to monitor vasculitis activity in the lungs due to the lack of scanning technologies.
    In the future, they may develop an ultra sound or MRI scan that can competently identify problems in the lungs.
    Having Weg's smoldering in the lungs but no where else is always possible and this makes keeping the disease in check extremely difficult.
    I don't know if the body can repair a lung hole or not, but being immune suppressed hinders our body's repair, but is necessary for remission maintenance.
    We all need to share the experiences and knowledge we gain from this disease and help everyone learn how to get well and what to do when things happen. This site helps provide this info.

  9. #359
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    24 hours from now is going to be the funeral. I just cant stop crying.
    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. #360
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    We will all be there (via cyberspace) as a combined Group to lend support to you and to Phils family during this most difficult of times.

    Please know that we will all be holding your hands and helping you to get through each day
    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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