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Thread: Hospitalized currently praying for a miracle

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    Default Hospitalized currently praying for a miracle

    Hello, my name is Krystle and my mother is in the hospital currently for a flat up that was thought first to be pneumonia. As it turns out she was having a flare. She also has Pulmonary fibrosis. She will have been in ICU for almost 2 weeks tomorrow. The antibiotics weren't helping and that's when they started pulse steroids of 1000mg of medrol. They did that for 4 days and thought to have the inflammation under control and the wegners in "remission". Little back story she isn't at her hospital of choice as when she was taken b Y ambulance they took her to the closest ER. Now she is at a hospital with no doctors familiar to her case or even to wegners. We have been debating transferring her. But the doctors where she is that have been in contact with her lung doctor and rheumatologist . So yesterday the critical care lung doctor came in and told us we've hit a wall in terms of her progress . She's not getting any better but she's not getting worse . At this point my mother hasn't eaten in almost 2 weeks she had hallucinations from the high doses of steroids and she's not having diarrhea and having to use a bedpan because she cannot get up because she is too weak. she de- saturates very quickly so is needing to be on oxygen and the medical staff there is really pushy with wearing the BiPAP because they are afraid she is going to need to be intubated. But she has a lot of anxiety with wearing the BiPAP because her mother passed away five years ago with the BiPAP on her face due to pulmonary fibrosis . They are going to start her on Rituxan today . I guess my question to you all is I have any of you heard of someone this bad off or worse coming back and having success with remission . I feel like she's on deaths door but my faith in God is what is getting me through this . Only help my faith can carry her through . Thanks for listening I hope I'm posting in the right spot .

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    Default Re: Hospitalized currently praying for a miracle

    Hi Khrystie,

    Sorry your Mom’s in such a bad way. Rituxin is a great med, but it takes several weeks to take full effect after it’s given. You may want to ask about meds that act more quickly such as cyclophosphamide or immuran.

    Also, if she can handle the move to her “home” hospital, that might be better for her.

    Good luck!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: Hospitalized currently praying for a miracle

    Thank you for the information. I'm not able to to be at the hospital as much as I would like. I'm not sure why they choose what medicine and what not. Somewhere I heard that it could start helping within the first week. We shall pray.

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    Default Re: Hospitalized currently praying for a miracle

    You don't mention what meds they have tried beside the steroids. My story is maybe rather similar. The steroid induced psychosis was both pleasant and horrible at times. Having experts with experience with treating Wegs is very helpful as is expert consultation. I had both. I think intubation for a couple weeks was part of reasons I managed to survive along with very aggressive treatment. Plasmapharesis? I had Umpteen sessions.

    I remember vividly a quote from one my treating doctors when my survival appeared very iffy or even unlikely since my Weg attack was very severe. I remember saying good by to my family twice. He is the one now doing my follow up care seven years later. "If you are not getting worse, then you are getting better." I will see him tomorrow. He has often reminded me how lucky was to not only survive but to attain the degree of recovery I did.

    So yes, we can survive and even recover enough to have a lot more years of life. It can take a long time but I have been considered in a drug induced remission for over seven years. Best wishes to you and family.

    Quote Originally Posted by Krystlew420 View Post
    Hello, my name is Krystle and my mother is in the hospital currently for a flat up that was thought first to be pneumonia. As it turns out she was having a flare. She also has Pulmonary fibrosis. She will have been in ICU for almost 2 weeks tomorrow. The antibiotics weren't helping and that's when they started pulse steroids of 1000mg of medrol. They did that for 4 days and thought to have the inflammation under control and the wegners in "remission". Little back story she isn't at her hospital of choice as when she was taken b Y ambulance they took her to the closest ER. Now she is at a hospital with no doctors familiar to her case or even to wegners. We have been debating transferring her. But the doctors where she is that have been in contact with her lung doctor and rheumatologist . So yesterday the critical care lung doctor came in and told us we've hit a wall in terms of her progress . She's not getting any better but she's not getting worse . At this point my mother hasn't eaten in almost 2 weeks she had hallucinations from the high doses of steroids and she's not having diarrhea and having to use a bedpan because she cannot get up because she is too weak. she de- saturates very quickly so is needing to be on oxygen and the medical staff there is really pushy with wearing the BiPAP because they are afraid she is going to need to be intubated. But she has a lot of anxiety with wearing the BiPAP because her mother passed away five years ago with the BiPAP on her face due to pulmonary fibrosis . They are going to start her on Rituxan today . I guess my question to you all is I have any of you heard of someone this bad off or worse coming back and having success with remission . I feel like she's on deaths door but my faith in God is what is getting me through this . Only help my faith can carry her through . Thanks for listening I hope I'm posting in the right spot .
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Hospitalized currently praying for a miracle

    Hi Krystle, Iím so sorry about your mommy. I know a lot of us diagnosed with Wegners also have a secondary autoimmune disorder. But to have Wegeners & pulmonary fibrosis is just plain terrible & mean. I think with aggressive treatment she can live a life with some modifications. However, I am not familiar with the treatment for pulmonary fibrosis & how that works with the treatment for Wegeners. For instance, Rituxin makes you immune compromised & Iím sure she is at increased risk for pneumonia. Not sure how that will affect pulmonary fibrosis. Thoughts are with you. Let us know if we can assist in any way


    Sent from my iPhone using Tapatalk

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    Default Re: Hospitalized currently praying for a miracle

    Thanks for the replies! Care of her rheumatologist she has been taking mycophenolate since Feb. 2017 along with predisone. This flyer has been coming for a while back in August she had been coughing up blood was prescribe some anabiotic's and it seem to do the trick . But a week before Thanksgiving the blood returned and she thought anabiotic's would do again but in fact here we are in the ICU two weeks later . When the ambulance took her to the hospital that isn't currently her home hospital where her rheumatologist and lung doctor are they started treating her accordingly for pneumonia having never heard of Wegner's. she wasn't getting better so they transferred her to ICU after one night and that is when they consulted with her doctors in Houston and they decided to do the high 1000 mg of Solu-Medrol . She completed that on the fourth and over the past week and weekend hasn't really improved but like you said hasn't gotten worse . They have again consulted with her rheumatologist and he recommended the Rituxan what she received last night and thank God tolerated that well and she got the full infusion with no side effects or reactions . Plasmapheresis would be our last option and in that case she would need to be transferred downtown to Methodist as that is the only place that currently offer is that treatment . She is lucky she is not into baited at this point for sure. thank you for sharing your story that is so similar Drz. It definitely gives me hope and hope is what I'm living off of right now . Love to hear and dream that she will be out of here soon enough on her body is ready and we will be able to celebrate the victory over Wegenrs if only for a short time or possibly years to come . Thank you guys for your support it means a lot .

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    Default Re: Hospitalized currently praying for a miracle

    @drz
    Forgot to ask how that plasmapheresis experience was for you ? And did you have any treatment with her rituxan?? Thanks!

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    Default Re: Hospitalized currently praying for a miracle

    Quote Originally Posted by Krystlew420 View Post
    @drz
    Forgot to ask how that plasmapheresis experience was for you ? And did you have any treatment with her rituxan?? Thanks!
    They started my treatment with RTX but it was not going to work fast enough for me to survive so they switched to CTX IV at first then moved to oral since it is easier to regulate dosage and that reduces risk of adverse reactions. I did have some serous allergic reactions to some of the drugs I got but hard to know which ones caused it.

    Plasmapheresis is much the same as giving blood or getting a blood transfusion since they drain it out and then replace the plasma part since that is where the bad antibodies are. I sometimes read during them and often slept through them or visited if I had some one visiting me at the time.

    I had severe bleeding in lungs which is why I often coughed up blood until they put tubes in to drain it. I lost half my lung function and was headed toward dialysis from Weg damage to my kidneys. I also lost my hearing and balance but I did survive so it is possible in most severe cases. So hang onto hope and do the best you can to help her while taking care of yourself. The hardest thing for me was watching my family suffer with anxiety about my survival. I think it is easier to be the patient than the family but neither are easy.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Hospitalized currently praying for a miracle

    I just wanted to pipe in and say how sorry I am to hear that your family is going through this. I've often said that I think it's harder for our loved ones to watch us be sick than it is for us to be sick... at least we're focusing on survival in the crappy moments and that makes me feel like I'm doing something to help the situation. I don't know if that makes sense.

    I think what drz said was perfect. Yes, there is high hope for your mom to come back and live a productive, enjoyable life. I also agree that she should be with doctors who get this disease. I think after diagnosis, that is our most frightening thing... to end up under the care of doctors who act like they know everything, but the last time they heard of Wegener's was one afternoon in med school (or on a 'House' season finale - where they treated the patient with radiation instead of chemotherapy). As soon as she can handle a transfer, I think it's important to be with her guys.

    A side note. I just looked up Pulmonary Fibrosis, and the symptoms look quite similar, if not almost the same, as Wegener's. Could she have been misdiagnosed, and been dealing with WG for a while now? Maybe that's why it came on so hard and so sudden. The treatment with RTX is also used for both, so that's a good thing. With the pulse steroids and RTX, she'll just need time now to recover. It's a road of baby steps, but nonetheless, they all lead forward. Patience was not one of my strengths before, but I've learned over the years (I hate that lesson, ha ha). Things come slower now, but they're so much more precious.

    Prayers for your momma, and you and yours.

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    Default Re: Hospitalized currently praying for a miracle

    Hi Krystle,
    I am glad your mom got the rtx well. In some cases it starts to work in few days. In others it takes more time. Each one is different. We pray that it will work soon for her. Hang in there and please update us.
    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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