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Thread: John's Home take....Yeah I've lost count!

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    Default John's Home take....Yeah I've lost count!

    John is home again! This was a crazy hospital stay. He had a total of 7 plasma exchanges, another RTX infusion, pulsate steriods and began oral cytoxan. He was in ICU for a total of 4 days. After having a heart cath done we found that he has a 80% blockage in his secondary artery and an aneursym in his main artery leading to the heart. He will go back to the cardiologist for a re-check in a couple of weeks.
    This trip was especially stressfull due to the fact that some of his family flew into town. Of course they have read up on WG on the internet so they are experts and I (the one living it with my husband knows nothing). It's sad that anyone would want to cause problems and make this about anything OTHER then John getting the help he needs. I don't think people understand what stress this causes to the patient and their spouses and children. Unless you live IN the home and care for that person you have NO CLUE what it is like. I can't just buy a plane ticket and visit and then go home and NOT have to deal with it. I don't think (unless you are dealing with it) how although it is not happening to you physically that it is HAPPENING to you emotionally and mentally. I don't think that people realize that money sometimes is secondary when it comes to being with your spouse. I have talked with all of you. I have talked with the doctors. I know his case is rare. And if something were to happen to him (I hate the thought of that) I never want to regret NOT BEING THERE WHEN HE NEEDED ME. It makes me sad to think everyone doesn't feel that way about their spouses. It makes me feel sad for their spouse....I can't imagine not loving them enough to want to.
    Ok so off the rant..
    Surgeon came in before we left and looked at Johns toes. His feet have become a very sensitive topic. However we had good news! She said that his color is coming back in 2 of them and she has high hopes that since the plasma exchange that the blood flow may return and he will not lose any of them, worse case scenerio right now is that he loose part of his little toe and just the tips of a couple more. YAY (Best news of the week...other then going home).
    He added 8 new medications to his already stocked pharmacy.
    One of the things we talked with the dr about last night was...."Did the tapering off of prednisone cause this" and the answer was "Most likely". Oh My Lord...I'm terrified of when they start the tapering again.
    His color is back! Last night he sang on the way home (Chicago an awesome 80's band) When we got home he watched Wrestling (something he had not watched in months!) And actually went to the bedroom and went to sleep (normally he was up all night in the recliner) I'm hoping for some better days.
    I don't know how many of you believe in God, but there were days that I was angry at him. I couldn't pray due to feeling that he had betrayed us in a way. I'm over that point but thankful for the ones who prayed in our place. You ALL are a walking testimony. I know my husband is!

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    awsome news. Prednisone tapers are like that though...It goes horrible one time and then maybe not horrible the next time. Id like to say he will learn the difference 100% between the pain and symptoms of wegners and the pain and symptoms of a taper but I would be lying. You do get better but are never quite sure. Toes are good.
    lightning crashes
    leigh

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    That great news , thinking of you all ,DEE x

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    Awesome news Staphanie!! It sounds like things are FINALLY under control.

    Don't fear the next pred taper. When he's better, and the time comes to start the taper, ctx and rtx will surely allow for smooth sailing. Yes, my glasses are rose colored, and I'll keep wearing them with you in mind.
    ~ Chris ~
    (Female )

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    That is good news Stephanie, let's hope John will continue to improve. Please do not loose your faith and please do not give up on God. He does things for a reason, and we may not never understand him.
    I hope my wife sticks with me like you stick with and support your husband if I ever get as sick as John is (although my wife stuck with me for 44 healthy years so far, and if you knew me you would know that is a pretty good test of being loyal to someone - LOL).
    Our prayers and thoughts are with you, John an your family. Rudi K.

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    Stephanie,
    I'm glad to hear that you and John are back home, and he seems to be feeling better...at least in better spirits it seems.

    It is interesting after being diagnosed how people start acting. My conclusion, people are CRAZY! I'm sorry that you've had to deal with these people when you were going through such a hard time. One thing is for sure, you find out who your friends are when you're faced with adversity like Wegs.

    We'll all keep thinking of you both. Take care
    Nicole

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    Great news Stephanie and John. YAHOO

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    Fantastic news Stephanie.
    Keep up the great fight John.....steps forward from now on.
    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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    Great news, Stephanie, hope things continue to improve!

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    Wow, this is great news!!! Keep singing, John. It's good for the lungs.

    And Stephanie you are absolutely right that no one else knows the whole story unless they've been there day in and day out. Good for you for standing strong.

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