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Thread: Jack - Rembered

  1. #41
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    Quote Originally Posted by Alysia View Post
    RIP dear Heather...
    Anyone know what happened to her ?
    Her daughter on Facebook said they think it was her heart. She had mentioned her heart problems to me. It didn't sound too good. She had other issues, too, besides Wegeners. I think these included lupus, respiratory issues, and I don't remember what else. But she was on a lot of pain killers and on oxygen the last time I saw her. Her Wegs may have been somewhat in remission, but I'm not sure about that. It's hard to say, maybe we will find out more later.
    Anne, dx'ed April 2011

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    Some friends on facebook wrote that she had Bechet and not Wg.
    I remember the lovely photos of you and her, Anne....
    Heart breaking....
    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. #43
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    Quote Originally Posted by vdub View Post
    I haven't been on the forum in a long time. I came on today because I had been thinking about Jack and was surprised to see this post as the first in the new post list. Several years ago, Jack said "just because you have one bad disease, doesn't mean you can't get another". He was so right. I have been focused on the diseases I have and not the ones I could get and skin cancer wasn't even on the radar.

    I had a biopsy taken a couple weeks ago and the lab test came back today - positive for cancer. Not a real big deal, though, at least I don't think so. It was a real small spot and they think they got it all even though it was a fast-spreading variety. I have a follow-up in a couple weeks to see anything is remaining. I'm not too worried.

    And if that isn't bad enough, I had to go off the mtx to prepare for my knee surgery and my rheumy wanted me to stay off to see if I would continue in remission -- nope, didn't work out that way. Started flaring -- extreme fatigue, joint pain, dripping nose, cough, shortness of breath, the whole 9 yards. So, rheumy put me back on mtx a couple weeks ago -- its just now beginning to kick in and I'm feeling a little better.

    I'll get a candle on for Squiggled. On edit: The candle is in-place for Heather. Can anyone think of others that I might have overlooked? Thanks, vw
    I am sorry vdub. sounds too much at once. But I can also hear your courage and strength and to know that you can handle it. Sending my prayers and lots of love <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.

  4. #44
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    What terrible news. I don't think I knew Heather, but the loss of any Weggie always hits hard. I hope her suffering was minimal. May her loved ones find peace and comfort.

    Vdub, I'm glad the mtx got the Wegs dog back to sleep for. So sorry you had to flare to find out you still need it. Sending you hugs and wishes for strong health.

  5. #45
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    Quote Originally Posted by Alysia View Post
    Some friends on facebook wrote that she had Bechet and not Wg.
    I remember the lovely photos of you and her, Anne....
    Heart breaking....
    I saw that, too, but know from talking to her in person that she had WG. She had more than one thing, and Bechet's could have been in there, too, though I only remember her mentioning lupus and her heart problems in addition to WG. She also had some kind of severe pain in her legs that may not have been WG related.... my memory on that is foggy. I think the WG was a little more controlled currently than some of the other things, but she definitely had it. We talked about the fact that asthma inhalers didn't help her breathing because she had WG and not asthma. She even gave me an inhaler she didn't use, and was planning on giving me another one. (I'm OK on inhalers at present.)
    Anne, dx'ed April 2011

  6. #46
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    I have been thinking about Heather a lot and here is the link to all of her posts. They are in reverse chronological order, so you need to scroll down to see the first one. Then you need to go to page 1 to see the rest of them. http://www.wegeners-granulomatosis.c...776&pp=&page=2 .

    I have seen references on Facebook to the fact that she also had Bechet's. That is not mentioned in these posts, that I saw, but I'm having a hazy memory of her mentioning at some point that it had been added to her list of diagnoses. In fact, it may be the one that killed her, because of the heart issues... though that is only what I'm getting from posts on FB. We know that WG can involve the heart, too, but Bechet's may be a more likely culprit. I just don't know that much about it and will try to find out more.

    So, here's the list of things that Heather had, that I know of: WG, lupus, RA, and Bechet's, plus maybe an existing heart condition that was aggravated by those....maybe I'm forgetting something. How unfair that such a wonderful person, or anyone, would be hit with all of those. We will never understand, but it does seem that if one is pre-disposed to autoimmune diseases, they may end up with more than one. We have seen that on here.

    Just wanted to share, because Heather eventually became more involved with FB and stopped posting on the forum. The whole time she's been active on FB, she's been in and out of the hospital pretty much non-stop, and when home, has been on oxygen and strong pain killers. May her soul now fly free, with all the pain and suffering a thing of the past.
    Last edited by annekat; 09-25-2015 at 03:28 AM.
    Anne, dx'ed April 2011

  7. #47
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    Thanks vdub, for putting Heather's candle up. And I'm sorry to hear what you have been going through. I'm glad you are upbeat, optimistic, and not worrying about the small spot of cancer that they probably got all of. Glad you are back on track with MTX, too, and it gives me insight as to what would likely happen if I were to go off it myself.
    Anne, dx'ed April 2011

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    Heathers daughter said that she had Wegeners and Bechets
    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

  9. #49
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    Quote Originally Posted by mishb View Post
    Heathers daughter said that she had Wegeners and Bechets
    Here is the link to Heather's introductory thread. http://www.wegeners-granulomatosis.c...-meet-you.html
    For some reason the one I posted above has stopped working, if it ever did. At the time she joined the forum, it seemed that the Wegener's dx was bothering her the most. She said her kidneys were operating at 50%, but she was put on MTX, which seems wrong to me. It should have been something stronger like CTX or RTX. She mentions an RA doc, and I don't know if that means a rheumatologist or that she had rheumatoid arthritis. In any case, she already had lupus when dx'ed with WG, and she didn't mention Behcet's, making me think that dx was added later. Her daughter also mentioned that she had fibromyalgia and several people mentioned heart problems that were aggravated by her autoimmune diseases, including Behcet's. I don't know that we will ever know the answers, but it looks to me like she needed better care all along.
    Anne, dx'ed April 2011

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    Of course, the WG mom community is heartsick whenever there is a death. I have thought it worth mentioning that I did not think her care was adequate :-(

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