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Thread: pberggren memorial thread

  1. #131
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    I'm so glad there are people familiar with plasma exchange on here, to set Alysia's mind at ease! She is going through so much anguish; everything helps, and just imagine how it would be without this great community of helpful people.
    Anne, dx'ed April 2011

  2. #132
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    Quote Originally Posted by Alysia View Post
    Scary days and nights here. Blood tests are tiny bit better today. Today day 4 of plasma exchange. Tonight RTX. And tomorow they are going to skip one day of plasma exchange. It it how it should be done ? Please pray.
    i was pretty sick during my time of plasma exchanges and had many I know but I don't think they did them every day as some times the body needs a while to sort of recoup from the treatments. I know I also had daily lab work and x-rays too to help monitor my treatment and expect they are doing same for Phil and may be using this info to determine when or how often to do the plasma exchanges.
    Knowledge is power! Wisdom is using it to make good decisions!

  3. #133
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    I know Phil has emailed DR. Specks in the past so wouldn't that address be in his mail box of contacts. If those emails were saved wouldn't they turn up in a search of past messages. I have found some addresses that way from old emails. I would also call his secretary and find out if he is away from the office and who might be covering for him. Mayo is ranked number one in pulmonary in USA so they have a few very competent doctors in that department.
    Last edited by drz; 09-23-2014 at 02:27 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

  4. #134
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    Thank you so much for your wisdom & info & prayers & love & support. We couldnt have made it without you. Love you <3
    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. #135
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    At Monday night they gave my sweetie RTX but they gave it without solumrdrol before. I tried to insist on it, talking about the protocol but the bitch nurse kicked me out of the room and started it. The day after I asked the docs about it. They said that 80mg pred are enough and that rtx is not givven to people who are on high doses of pred. WTF ??? I think they are wrong. What do you think ?
    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. #136
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    Phil's lung doc talked with dr. Specks. He doubt that the plasma exchange will help and suggests IVIG treatment. They will take blood tests today. What do you know about IVIG ? The last 3 days the blood tests are getting better, sats are better too. I was happy about it but the lung doc said that it is not signficant and makes me sad and scared again. Please continue to pray. Thanks for being with us <3
    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. #137
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    I've been off the site for a while and am so sorry to learn to how poorly Phil is. Alysia, if it's any help, my plasma exchange was carried out on week days with weekends off. Thinking of you both and praying. Julie xx

  8. #138
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    "What do you know about IVIG ?"
    Not much, but this tells you the basics IVIG and Plasmapheresis

    Keep smiling and although doc doesn't seem too bothered about blood results improving, it's much better than them worsening!
    Diagnosed April 1995

  9. #139
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    Quote Originally Posted by Alysia View Post
    At Monday night they gave my sweetie RTX but they gave it without solumrdrol before. I tried to insist on it, talking about the protocol but the bitch nurse kicked me out of the room and started it. The day after I asked the docs about it. They said that 80mg pred are enough and that rtx is not givven to people who are on high doses of pred. WTF ??? I think they are wrong. What do you think ?
    I've never heard of having Solumedrol before RTX. I know they give a little shot of pred and Benadryl (for me it was 100mg pred each time) but never Solumedrol. I've had it (Solumedrol) before but not with the RTX, so don't worry about that part. It makes sense to not give high doses of steroids and RTX together.... too much of an immune compromise.

    There, one less thing to worry about.

  10. #140
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    Quote Originally Posted by Alysia View Post
    Phil's lung doc talked with dr. Specks. He doubt that the plasma exchange will help and suggests IVIG treatment. They will take blood tests today. What do you know about IVIG ? The last 3 days the blood tests are getting better, sats are better too. I was happy about it but the lung doc said that it is not signficant and makes me sad and scared again. Please continue to pray. Thanks for being with us <3
    I know very little personally. It is something that my asthma/immunologist is considering for me. It is designed to support an UNDER-ACTIVE immune system....rather than the overactive immune system that I THINK is part of the Wegeners scenario. I suppose it is possible that with wegs, the immune system might be over-boosted and need to be tamped down. BUT...this is COMPLETE speculation on my part. Sounds like Dr. Specks should know best. Hopefully the hospital doctors pay close attention to his recommendations. I am SO glad that you have been able to get in touch with him.

    And by the way...maybe you could encourage that bitch nurse to take some of her vacation time and get away from the two of you. You need much better than that!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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