Hospitalized currently praying for a miracle

[Krystlew420]

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 .

[Pete]

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!!

[Krystlew420]

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.

[drz]

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.


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 .

[NatriceRomeo]

Hi Krystle, I’m 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 & I’m 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


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[Krystlew420]

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 .

[Krystlew420]

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

[drz]

@drz (https://www.wegeners-granulomatosis.com/forum/member.php?u=939)
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.

[marta]

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.

[Alysia]

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.

[Krystlew420]

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!

[Alysia]

I do CT without contrast and it is good enough according to my lungs dr.

[Krystlew420]

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.

[Alysia]

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.

[Krystlew420]

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!

[NatriceRomeo]

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.


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[NatriceRomeo]

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


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[drz]

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.
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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.

[Krystlew420]

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!

[drz]

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.

[Krystlew420]

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?

[NatriceRomeo]

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.


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[Krystlew420]

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.

[drz]

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 (https://www.wegeners-granulomatosis.com/forum/member.php?u=939) 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.

[Alysia]

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.

[Krystlew420]

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!

[Dirty Don]

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.

[Lilly]

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

[Krystlew420]

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!

[Alysia]

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.

[Lilly]

Hi Krystle, I cant imagine the stress you are under right now, and I am so sorry about that. I worked in a hospital for 12 years right after I graduated High School, as a file clerk. As time went on, I moved on to different things, like helping the X-ray and CT Scan technicians prep the patients before scans. I have always known that the worst place to be when you are sick, is in the hospital....just simply because of the sick people there....But I say that, only because I agree with you, she should be healing. Dealing with hospital personnel, nurses, doctors, etc...is very challenging for family members, and it seems like its a vicious cycle of getting your questions passed around before you get any true answers. With 3 lung issues that she is possibly fighting, she really needs to get closer to you, and get better attention. Last year, my lung doctor was trying to figure what was causing my lung problems. The CT scan looked strange, not like normal granulomas, not like a cancer, etc....so he decided to do a bronchoscopy and just look for himself. He was surprised that my lungs looked like they did. He said they looked pretty good, no terrible damage that he could see. But he did do a wash of my lungs, and sent the fluid off for testing. It came back showing that I had MRSA in my lungs!!! And that is something that is not easily taken care of. We opted to use 2 types of meds. One was Vancomycine, and the other I would have to look up. But I had a PICC line inserted in my chest, and gave myself that poison from the comfort of my own home for a month. My doctor decided that was long enough, and if it was going to work, it had plenty of time, and at this point the meds were more toxic than the MRSA. So, each time I get a chest cough that turns green, he will prescribe amoxicillin, or other antibiotic. I guess I'm sharing my story with you to just give you something else to be aware of....and sometimes you just have to do what you think is best for your Mother. I do hope and pray that you can get her moved closer to you, and get to the bottom of what is going on so she can begin healing. Best of luck, stay strong, and there are so many people right here for you, if you have questions, or just need to vent. Blessings

[Krystlew420]

Wow! MRSA! That is crazy. How did they ever know for sure the bacteria was gone??
we moved her to the new hospital as the specialize in lungs there, it may be further for us but it's a way better hospital.
the doctor said she's headed in right direction. She just has so many Issues, but thank god she has no kidney involvement! I'll take the small victories. Thank you for sharing your story. It's amazing, like all of you! Thank you for bringing hope. I told the doctor that today is what we're holding onto. I don't know what her future holds but with prayers and a good medical team I believe she will be home soon as she can be.

[Lilly]

Good morning Krystle...I am so happy reading your post!! I feel such a sense of relief from you, just knowing that your Mother is in new, good hands, and the doctor is being positive about her lungs. And no kidney involvement is a relief, and it IS the small victories that sometimes get us through the hardest times. What a wonderful first post for me to read this morning, as I have been thinking about you and your Mother and praying something would turn in the right direction. We are all here for you as you and your Mother begin this new hope, and my prayers are continuing for her healing. Just to hear you say that "today is what we are holding on to", is an attitude that we all have to have. Blessings to you and your Mom and family......

[Alysia]

Thinking about your mom & you and sending prayers. How is your mom doing so far, Krystle ?

[Krystlew420]

Update on my mother, she was doing well with her breathing trials for extubation but was just not strong enough and she tired out too quickly. She had a tracheostomy Monday. Now her sedation is trying to be weaned but it is proving very very difficult for her. Her blood pressure is all over the place and she is just not stable. My prayers haven't stopped. I wish I had better news.....

[Alysia]

Update on my mother, she was doing well with her breathing trials for extubation but was just not strong enough and she tired out too quickly. She had a tracheostomy Monday. Now her sedation is trying to be weaned but it is proving very very difficult for her. Her blood pressure is all over the place and she is just not stable. My prayers haven't stopped. I wish I had better news.....

Keep on praying. We all pray with you and hold your hand during this hard time. Lord have mercy..
I know few weggies who live full life with trachectomy.
I hope they can stabilize your mom soon.
Hang in there. Being the caretaker is harder then being the sick one. I guess that from her point of view she is still asleep.
Please feel comfortable to share whatever you feel like.

[Lilly]

Dear Krystle, I am so sorry to hear that she is going through this, but like Alysia said, we are still praying for her...and for you. Sometimes its like a roller coaster ride....the highs and the lows can make you crazy. But please know that we are always here for you, and always praying. Take good care of yourself too!! Don't let yourself get too run down, you have to think of yourself also. Blessings and Love, and Prayers for you both,

[NatriceRomeo]

We haven’t heard from you in awhile. How is your mom doing??


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