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Thread: Hospitalized currently praying for a miracle

  1. #11
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    Default Re: Hospitalized currently praying for a miracle

    Tonight marks the 48 hour mark of her infusion of rituxan. they now want to take her for a CT scan in case of blood clots, but she is allergic to the contrast so she will likely need some other form of detection. She was seeming more alert and opening her eyes much more today than the previous week. Thank you all for your comments and stories and well wishes. It really does help tremendously through all this. I even shared some with my mother as inspiration that she can beat this! We definitely haven't ruled out moving her to her "home" hospital as the attending doctor here recommended transfer if the rituxan didn't show signs of improvement. He has been consulting with her rheumatologist and lung doctor. So they are not just shooting in the dark. We were told we should see improvement (not how much) within a few days. We are very fortunate she has no kidney involvement. Her Pulmonary Fibrosis is likely a symptom of the Wegners as i understand it and she didnt find out about the WG until 2 years ago i believe, but had known about PF for 5 years. Really weird thing is however that my grandmother (mom's mother) had IPF. Would never get lung biopsy we we have no idea what caused hers! I mean what are the odds. Anyways my dad is reluctant to transfer her because he doesnt think she can handle it right now and since these Doctors are talking with hers he seems to feel at peace right where we are at. We have a long road ahead for sure, but baby steps is right! Thanks guys!

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  3. #12
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    Default Re: Hospitalized currently praying for a miracle

    I do CT without contrast and it is good enough according to my lungs dr.
    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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  5. #13
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    Default Re: Hospitalized currently praying for a miracle

    She ended up getting contrast after a leg ultrasound showed blood clots in both legs. She has one small clot in her left lung, not close to an artery thank god. She has responded well to the heparin and a transfer to her home hospital has been officially made Friday. Hoping we get in quick as possible.

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  7. #14
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    Default Re: Hospitalized currently praying for a miracle

    Quote Originally Posted by Krystlew420 View Post
    She ended up getting contrast after a leg ultrasound showed blood clots in both legs. She has one small clot in her left lung, not close to an artery thank god. She has responded well to the heparin and a transfer to her home hospital has been officially made Friday. Hoping we get in quick as possible.
    Thanks God they found the clots, treat them, and that she is back to her home hospital. 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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    Default Re: Hospitalized currently praying for a miracle

    My mother has now been waiting for a bed to open up at her home hospital for over a week now. She has received ger 2nd infusion of rituxan. She had a really rough night last night due to ICU staff threatening her with Bipap use and or intubation. Her breathing was in the low 70s after using bathroom and it just takes a while to get back up to t he 90s. With each new nurse every 12 hours its a toss up at whether or not she will be harassed about her breathing. Her anxiety level is off the charts because of this and while i understand they need to keep her alive what they need to understand is that she will not stay that low, she will climb back up if allowed the space to calmly breathe. We are definitely doing the plasmaphersis once she transfers. I am holding in so tightly to the testimonies on here and to hope in the lord almighty to restore my mothers lungs and for this rituxan to help her body along. The doctor has even discussed a lung transplant which we arent to that point yet. But its all happening so slowly i feel so helpless watching her struggle to breathe. With christmas in 3 days its very difficult to choose going to the hospital or to stay home with my husband and 2 children, ages 4 and 8. They miss their grandmother so much as do we all. Thanks for letting me vent, it lessens the anxiety for a brief while and makes me feel like i am doing something. Merry christmas!

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    Default Re: Hospitalized currently praying for a miracle

    Hey there Krystle, I understand how anxious you are and I can’t blame you. Just so you know-intubation or BiPAP is not the end & may actually let your moms lungs have a rest & heal. I’m sure you can imagine how your mom feels not being able to catch her breath. We are all thinking of you.


    Sent from my iPhone using Tapatalk

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    Default Re: Hospitalized currently praying for a miracle

    & hopefully you have a Merry Christmas & things start looking up for you and your famiky


    Sent from my iPhone using Tapatalk

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    Default Re: Hospitalized currently praying for a miracle

    Quote Originally Posted by NatriceRomeo View Post
    Hey there Krystle, I understand how anxious you are and I can’t blame you. Just so you know-intubation or BiPAP is not the end & may actually let your moms lungs have a rest & heal. I’m sure you can imagine how your mom feels not being able to catch her breath. We are all thinking of you.
    Sent from my iPhone using Tapatalk
    For me intubation was great respite from the endless struggle of fighting for every breath and I believe a key ingredient to my survival. Of course the battle resumed after it ended but then resuming intubation was also an every present option for next few weeks. After a couple years my lungs partly recovered too and lung function became stable at 60%. It took a few weeks to get off the oxygen too.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Hospitalized currently praying for a miracle

    Thank you all so much. It's grounded solid words like you guys that make me feel hope and remind me she's fighting for her life and she can win this battle! And that these procedures aren't the end! It's just tough watching her battle herself. If that makes sense. Thank you so much!

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    Default Re: Hospitalized currently praying for a miracle

    Quote Originally Posted by Krystlew420 View Post
    Thank you all so much. It's grounded solid words like you guys that make me feel hope and remind me she's fighting for her life and she can win this battle! And that these procedures aren't the end! It's just tough watching her battle herself. If that makes sense. Thank you so much!
    I think it might be easier to be the patient in this sitation, although neither role is easy. When I was the patient, seeing my family's concern about my survival made me struggle harder to live since didn't want to let them down by dying after all the effort they had put into having me stay alive. I felt I would be letting them down if I died. I think that is why in hospice programs where death seems very close and inevitable, the family is encouraged to give the dying person permission to move on. I remember this when my mother was dying from kidney failure and the hospice workers encouraged us to give her permission to let go and move on so she could end her pain and suffering.

    The will to live is often key to survival and people can often postpone death when they have unfinished business.
    Knowledge is power! Wisdom is using it to make good decisions!

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