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Thread: Hospitalized currently praying for a miracle

  1. #21
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    Default Re: Hospitalized currently praying for a miracle

    So did their presence help or hinder your healing?

    She has been transferred it did havento be intubated. She couldn't tolerate a regular face mask and wouldn't tolerate the bipap. I'm hoping and praying this is a blessing in disguise as you all say it's not the end.

    @drz What hospital did you have your care at?

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  3. #22
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    Default Re: Hospitalized currently praying for a miracle

    I imagine seeing you mom intubated is horrible. Just think of her lungs getting a rest & healing. Now that’s all her body needs to do & doesn’t have to concentrate on breathing. We are all thinking of you & your family.


    Sent from my iPhone using Tapatalk

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    Default Re: Hospitalized currently praying for a miracle

    It is horrible. I'm praying her Christmas present will to be extubated. If only she could have tolerated the bipap machine she would not have required this intubation. Trying to stay positive is really hard. She is heavily sedated and I'm not sure how she will react when they begin lowering her sedative to get her off the tube.

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  7. #24
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    Default Re: Hospitalized currently praying for a miracle

    Quote Originally Posted by Krystlew420 View Post
    So did their presence help or hinder your healing?

    She has been transferred it did havento be intubated. She couldn't tolerate a regular face mask and wouldn't tolerate the bipap. I'm hoping and praying this is a blessing in disguise as you all say it's not the end.

    @drz What hospital did you have your care at?
    The intubation should help her body get some needed rest while the meds give her some help in healing.

    My daughter's story sound very similar to yours. I doubt i would have survived without her heroic efforts. She left her job and came and stayed near me for several weeks during my struggle, often sleeping or resting in a chair while I slept or tried to sleep. She was able to take some short breaks from my care and return home to be with her children when I was intubated. She spent many a night watching over me and talking with doctors to be sure I was getting the best possible care. She read bedtime stories over the phone to the youngest ones, one was only three, who seemed to understand that mommy was helping pappa get well since he was very sick. She had friends doing research on treating Wegs back in her home area, NYC. I got my care at U of MN since Mayo would not take me for in patient care since I had just gone on Medicare the second day I went into a local hospital where I languished for a couple weeks with several incorrect diagnoses, pneumonia being one them. It was a consult though at Mayo that got me a correct diagnosis from a blood sample and my records. They then transfered me a few hours hours later to U of MN hosptal where I got great care since they had experience treating Wegs and they consulted on my case with some of the best experts in the country. I have diabetes and am on a insulin pump which is also another autoimmune disorder that greatly affects ones my health in a negative way and also complicates treatment.

    I already had neuropathy and kidney damage from the diabetes plus a suppressed immune system before getting Wegs. I saw a dozen specialists over 2 and half years about the various GPA symptoms but got no help or a correct diagnosis till I was was knocking hard on death's door. But eight years later i am still here doing my best to take care of myself and hope things turn out as well for you. It is hard to view this as a Christmas blessing but being in the right facility and getting the correct care is often crucial to surviving a serious attack of Wegs (now GPA). Hoping for a Christmas miracle for your family. Best wishes.
    Last edited by drz; 12-26-2017 at 12:14 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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  9. #25
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    Default Re: Hospitalized currently praying for a miracle

    I understand the dread of watching your mom sedated and intubated. She is in the hands of Our Lord. We all pray for her, for you and for all your family.

    Drz, your daughter is totally amazing and a wonderful blessing.
    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.

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    Default Re: Hospitalized currently praying for a miracle

    Wow your daughter is awesome! I wonder if she ever felt guilty for leaving you once you were intubated, as that is what i am struggling with. The nurses keep assuring me she is comfortable. They went into to her lungs today to take a look around and didnt see anything too alarming i guess. Took some old blood samples to be tested and we know now there is 100% no active bleeding. I wonder if she is conscious as sometimes her eyes open and its just very disturbing knowing she is there hooked up to tubes and i am here at home. I once again have to remind myself this is in gods hands and the medical team. But like your daughter being there for you asking questions double checking things talking with doctors, thats exactly what my brother and myself have been doing for the past 3 weeks, we just hope no stone goes overturned and that all of this wasn't just for nothing. I wonder do you remember being intubated? And for how long do you stay that way! I guess she is not having anxiety anymore sedated atleast and her body can rest. I just dont want her to feel alone!!!!!! Sorry I have to go play Santa now. Thanks again for listening and encouraging words. I dont know what i would do without this website! God bless!

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  12. #27
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    Default Re: Hospitalized currently praying for a miracle

    Just for peace of mind, she is comfortable as she can be. I was intubated & unconscious for 10 days plus another 7 in ICU & recovery. Never knew a thing...seriously. The question is how long do the docs keep one in sedation...10 days to 2 weeks was the answer. Docs were about to unhook me when I spit the tubes out & guess I caused a bit of a ruckus as to where I was & all the crap that goes with recovering from sedation. But, the docs saved me & I recovered to remission with great protocols & docs. Best to you both.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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  14. #28
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    Default Re: Hospitalized currently praying for a miracle

    Hi Krystle, I just wanted to say that there are lots of doctors, specialists, who are great. But this disease needs doctors who KNOW and TREAT wegeners. I have had doctors say they are actually afraid of wegeners patients, simply because they have no hand on knowledge of treating someone with it. I do hope you can find some doctors who can jump in and have experience. I know how difficult it can be to find a good doctor. When I moved and had to find a whole new slew of specialists, it was so difficult. I actually looked at it like this....when I went in to meet a new doctor, I just simply told them that I had wegeners, and I am a patient who needs a doctor who feels dedicated to taking on my medical history. I was honest, not testing his abilities, just wanted to know if they would be able to be dedicated to me and my condition. I said I was fine if they say NO. That's what I NEED to hear, so I can move on to another. I have found a great group of doctors, and if my illness gets beyond their control, they know they can honestly tell me. I wish you and your dear Mother the best, Blessings, Lilly
    Life is a Gift~ Lilly

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  16. #29
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    Default Re: Hospitalized currently praying for a miracle

    I appreciate everything and all the words of comfort. I will read these stories at night to give me strength and hope. I pray for her complete rejuvenation of lung function. She was struggling so bad to breathe atleast while intubated she is no longer struggling. They went in and did a lung wash and a biopsy upon arrival to new hospital, they found a particularly nasty bacteria resistant to antibiotics present in her lungs. She may have acquired it at the other hospital or maybe has had it all along. Her biopsy did show granulomas. I can't be at this hospital as frequently because it is 2 hours round trip. But I have so many questions! It's been 4 weeks she has been in ICU and I feel she should be healing. No way to tell and it's this wait and see approach that drives me crazy! They have put a hold on any plasmapheresis due to the bacteria found in her lungs. I can't tell if she's just fighting pneumonia or wegners or her PF!! Thanks for listening as always!

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  18. #30
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    Default Re: Hospitalized currently praying for a miracle

    Thank you for the update. I hope that finding the bacteria and treating it will help your mom's lungs to recover. Weggies do have combinations of both wg and infections at the same time. Sending more prayers.
    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.

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