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Thread: My Mother

  1. #1
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    Post My Mother

    Here is my story of how it all began my mother wasn't feeling her best for months and of course her family practitioner said it was her potassium well April 15 she went to the hospital after being in the bed for two weeks she was told she had pneumonia which she did then by the next morning the antibiotics were still not working so they tried several different ones still nothing and she started to get worse they put her on a respirator . The next morning one of the Doctors told us we had to transfer hospitals because there was much more going on and she needed to be at a better hospital that was more equipped for her situation to find out what was going on or we were going to loose her .so we had her transferred right away . ICU in the new hospital the Pulmonologist and nephrologist were baffled why nothing was working so over a week almost two of blood test and cultures sent off to California finally one of the test showed this rare disease Wegeners Granulomatosis we were all terrified as my mother so close to death they started treatment of cytoxin immediately and prednisone . The the antibiotic finally started working to kill off the pneumonia .
    Her kidneys were being watched very closely and all of this went on for 2 more weeks . Thank you lord she pulled through she is just now after 6 weeks out of the hospital still doing rehab and treatments every two weeks and slowly getting strength back her muscles still weak but getting better !This is the most scary thing she or our family has ever had to deal with . Of course so many details to go along with all of this but ,I'll say we are so Blessed to still have her and learning more about this as we go along . So now I've moved my parents here to Alabama with me and in the process of their transferring . Thank you for allowing me to share bits. Of our journey (:
    Last edited by Katrina; 06-07-2014 at 03:16 PM.

  2. #2
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    Welcome!! SO glad that you have found us. I am very sorry about all you and your family have gone through. But you have found a wonderful group of people who will give you tons of help. You only have to ask. I hope your mother will also join when she is feeling better. You will see from my signature that I do NOT have Wegeners. I was mis-diagnosed with it just before i joined. But I have many similar issues, and I have made lifelong friends here. You will find strength for your spirit and answers to your fears and worries here. So...now you know why I offer an enthusiastic welcome to you!!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  3. #3
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    Hi Katrina and welcome.

    I'm so glad that you decided to do some research in to Wegener's on behalf of your mother, and found this forum.
    Thank goodness for the doctor that decided to transfer your mum.

    Now that she is on the correct medications she should be feeling a lot better in no time.

    Read as many posts as you can on here and put a word into the search bar eg cytoxin, and you will find many posts on that specific topic.
    Also, don't be afraid to ask as many questions as you need to, in order for yourself and the rest of your family to understand what your mum is going through.

    Keep you chin up and let your mum know that we send her best wishes for a speedy remission.
    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

  4. #4
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    Another welcome Katrina. I am in Tx and my daughters did what they could to keep me alive also. This forum will be a tremendous blessing to you and your parents. Thank you for sharing your mom's experience and give her a big hugfrom all of us. From experience we all know that there is lots more you could have said. When you have time and want to express hers or your thoughts and emotions, fears and questions, please do. I have found in a short amount of time that this is a safe and comforting forum. Continue in your faithfulness and we echo your gratitude that your mom is still with us.
    Here is a hug for youBeverly

  5. #5
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    Welcome Katrina so glad your Mom is doing better and getting the correct treatment. Sound. like you all went through a very rough time. This is a good place to be if wegs is involved. We have an excellent support system here and a comprehensive archive with tons of information. there are many loving and caring people here.

    I wish your Mom all the best and hopefully she'll be strong enough to join the forum soon.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  6. #6
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    welcome Katrina.
    you and your mother had being through such scary journey. Thanks God she was dx on time and got the correct treatment. It might take some time but she will feel better and better as her treatment will proceed. she is blessed to have you by her side. continue to ask whatever you feel like. we are with you now.
    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. #7
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    Welcome, Katrina, and best wishes to your mom; I'm glad it sounds like she is responding well to the treatment. Thank goodness the WG diagnosis was made in time to start treatment and save her. I also had severe lung involvement that looked like pneumonia, after a couple of years of recurrent ear and sinus infection that also turned out to be WG. It took the severity of the lung issue to get me diagnosed, and about the same time I developed a saddle nose from the sinus involvement, which sort of clinched the deal, along with a positive nasal biopsy. I was put on Cytoxan and prednisone, same as your mom, and this cleared up my lung issues in short order, and they haven't been back. It did take me about 6 weeks as well to start getting my strength back. The sinus and ear issues have dragged on due to the nature of the damage done. I'm off CTX and on a maintenance med, MTX, and currently 15mg. of pred. Various stresses in my life have probably kept me from going into a remission, but I'm pretty well stabilized and functioning quite well anyway. Stress is the big one; if your mom is lucky enough not to have to work, is able to rest a lot, and is not subject to much stress, remission will come more easily for her. I hope that is the case! Everyone's case is a little different, and many are able to return to work and responsibilities with little or no problem. Best to her and you, and keep us posted on her progress.
    Anne, dx'ed April 2011

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