Need help/advice: Dad sedated in the hospital on ventilator extremely agitated

[Rosebud1029]

A few weeks ago my dad was told he had vasculitis, confirmed from a kidney biopsy. The doctors never said if he had Wegeners, but from what it seems from his symptoms, affecting his sinuses, lungs and kidneys, it seems to definitely be Wegeners or MPA. Things started going downhill the middle of November. My dad starting losing a lot of weight and feeling tired all the time. By December he was laying in bed everyday and not able to concentrate too well. He went to the doctors and they did a blood test. On December 19, he passed out in the doctors office after hearing the news that his kidneys were failing and was rushed to the hospital. He found out his kidneys were functioning at only 10%. They did a biopsy a few days later to try to figure out what was going on and that is when they determined it was the autoimmune disorder causing inflammation to his kidneys, resulting in acute kidney failure. Immediately, they started him on 400 mg of Predisone for three days, as well as cytoxan (I believe 250 mg or mcg, not sure). He was also coughing up mucus and blood and having pain in his chest and shortness of breath that started while in the hospital. They did a chest x ray and an MRI I believe which showed that he had scarring throughout the lungs. The doctors were not sure what the scarring was from. My dad was a smoker until three years ago when he quit, so it is unknown if such scarring was from the disease or from past smoking. There was no inflammation at this time. A few days later, he couldn't breathe properly on his own so they gave him a mask to give him extra oxygen and transported him to the Cardiac Care Unit. This was December 29th.

That night he got worse and he ended up not being able to breathe properly with the extra oxygen and so he had to go on the ventilator and was sedated on propofol. They also gave him Ativan because he kept trying to pull the tubes out upon waking up. They had him on 15 mcg of propofol in the beginning and I'm not sure of the dose of Ativan. He was completely asleep from the looks of it when we went to visit him the next day. The doctors confirmed that his lungs filled up with fluid, but are still not aware even now for sure if it was an infection such pneumonia or a fungal infection, the kidney failing, or the immune disease. They gave him three different antibiotics to make sure, along with the lower dose of steroids and the cytoxan. He started dialysis and had numerous plasma exchanges. The fluid in his lungs finally cleared completely after two weeks. After the first week, he was able to be put on CPAP mode of the vent. Luckily his heart was not affected. They did a CT scan of his brain as well as an EEG as a precaution because he was not very alert, but everything came back negative and there looked like there was nothing wrong with his brain and there is no reason to believe he would have any brain damage.

Fast forward to today, four weeks after being put on the ventilator, his lungs look good, with no fluid, still some mucus, and his kidneys are recovering (up to 30% now from 10% before) and the creatine level has been staying stable even with no dialysis for a week. He was not able to be successfully weaned because of mucus and probably dependency on the vent for so long. Last week they did a tracheotomy because he had too much mucus and did not want to risk him being too weak to cough it up and it going back into his lungs.

We were hoping then they would be able to wean him off the sedation once he had the trach put in. However, the biggest problem right now is that he is too agitated to be taken off the propofol. His heart rate starts going up to 110's, 120's when he gets agitated. My mom got so frustrated one day and demanded the nurses completely stop the propofol. When they did this he got so agitated and his blood pressure went up to 200. The highest they have had the propofol up to is 50 mcg being the highest. They have given him injections of the ativan which usually calms him down. However, a few days ago, that did not even work. He was so agitated, moving his arms and legs and looking like he was trying to beat someone up, which I read could be a sign of lack of REM sleep. They started him on an antipsychotic drug, Haldol, which seemed to calm him a bit. He is now down to 30 mcg of the propofol. However, today he was very agitated again and very restless moving around a lot. He opens his eyes and can hear sounds, but is not too responsive otherwise. They have tried to give him morphine to calm down as well, but nothing seems to be working. I am worried about how long he has been on so much sedation and we don't know the cause of what seems to be this delirium he is under. I know you can get ICU delirium and it could also be from the medication he is on. I have been reading that steroids and the chemo drug can cause this. Benzos, which I believe Ativan is, can also cause hallucinations.

We are trying to transfer him to another hospital with a special care unit that focuses on extremely complex patients and they say they specialize in getting patients weaned off the sedation and the vent. The doctors and nurses at the hospital he is at now do not seem to know why he is so agitated and do not seem to know what to do to get him off the sedation completely. We just want him to be able to wake up and get him out of this delirium. If anyone has had any type of experience like this or if you know anyone who has had this type of experience please share anything that may be helpful to calm him down. I am sorry this is so long, but I would greatly appreciate any advice. It is so sad because his body seems to be recovering, but now this delirium is causing problems

[renidrag]

I have been on this forum for six years and have never heard of dilirium setting in. Several hospitals, have you had any contact with a vasculitis or GPA specialist? Where are you located? We can help you find a specialist.
Dale

[andrew]

Yup I was on a ventilator on all the cool drugs for weeks as well. Kept trying to pull out my track and drainage tubes. Plenty of hallucinations for sure. They're exactly like the real thing. I could still swear I saw what I saw both in a semi-conscious state and totally unconscious. This may explain some of his agitation at least. Has there been any suggestion of an allergic reaction to any of the drugs he's on? Sounds like he needs more specialised care. What's the progress on getting him transferred - that could be an extremely complex process but it will have been done many times before. His body recovering is a HUGE step in the right direction which is fantastic.

What are the current medical staff saying about next steps? Are they supportive of moving him to a specialist care unit?

[Rosebud1029]

The infectious disease doctor they had brought in when his lungs filled up with fluid is actually one of the vasculitis specialists in our area, but she does not seem to be playing much of a role. His nephrologist, who I do not believe is a vasculitis specialist, has been the doctor controlling the treatment for the autoimmune disorder. We live in South Florida, about an hour north of Miami in Coral Springs, FL. I know there is a Cleveland Clinic in Weston, FL, about 30, 40 mins away from us and they have a a vasculitis center. I do believe there are vasculitis specialist in our area. It is frustrating when you are not sure if the hospital is doing enough to help him. We are trying to transfer him another hospital. I want to try to figure out once if he is transferred there if they can get a vasculitis specialist who plays a major role in him recovering.

[renidrag]

Get to Cleveland clinic ASAP.

[Rosebud1029]

One of the nurses suggested that the chemo drug could be causing hallucinations, but the nephrologist did not want to take him off it because he said I believe that he does not want to mess with the kidneys. My mom, who is down in South Florida (I am actually more up north in FL right now which is frustrating) went to visit this specialized care unit at a different hospital yesterday and the nurse there told her they specialize in weaning off the vent and sedation and she had seen patients like this before. It is good that his body is recovering, but I do feel that they could be doing more to try to wean him off the sedation and the communication between the doctors and us is horrible. It feels like you are pulling teeth to try to get some information. My mom told the social worker at the hospital that she liked the other hospital she went to with the specialized care unit and the social worker said she would get everything together, but we have not heard back yet. I am not sure how long this transfer will take and if they have to determine if he is strong enough to be moved. His nephrologist has seemed to help him a lot with his kidneys and lungs recovering, and he would be able to follow him to that hospital, but I would prefer for a vasculitis specialist to play a more active role.

[renidrag]

What chemo drug is your Dad taking?

[Rosebud1029]

Cytoxan (Clycophosphamide)

[renidrag]

What is the dosage? Cytoxin is the heavy hitter for Wegs.

[Rosebud1029]

They started him off when he was still awake taking 5 pills of it daily, all at once, each 25 mg each. So that would actually total up to 125 mg, not 250 mg as I had posted earlier. To my knowledge, that is the dose he is still on, the 125 mg, but now through IV

[mrtmeo]

The benzo's, propofol and antipsychotic could be causing a reaction.
These drugs have to be tapered off very slowly.
The agitation could be due to steroid psychosis.
The morphine is an opiate and opiates suppress the respiratory system, not a good idea with poor lung function.

You can contact the Vasculitis Foundation for a local contact in FL
Contact Us (http://www.vasculitisfoundation.org/about/contact/)

and there is a dr who's son was treated in (Pensacola) FL for MPA (Microscopic Polyangiitis) here
https://www.youtube.com/watch?v=zkxkq5QjOhc&list=PL451A815B784B2048&index=12

Was he tested for ANCA?
PR3 and C-ANCA is weg's
MPO and P-ANCA is MPA

[Rosebud1029]

Yeah I would not be surprised if any of these drugs are causing this I'm not sure if it would be a better idea to consider the Cleveland Clinic or if going to the specialized care unit and getting a vasculitis specialist there who is more involved, but they have to do more than they are doing to get him back to normal. I am not sure which ANCA it is. The doctor never confirmed which type it was. I will try to ask tomorrow. Thank you for the information. I contacted the Vasculitis Foundation and hopefully they will get back to me

[annekat]

They started him off when he was still awake taking 5 pills of it daily, all at once, each 25 mg each. So that would actually total up to 125 mg, not 250 mg as I had posted earlier. To my knowledge, that is the dose he is still on, the 125 mg, but now through IV 125mg./day of CTX sounds like a low dose for the body weight of most men. That's the amount suggested for my weight at diagnosis, about 140-145lbs. if I remember right. When given by infusion, I've always had the impression it would be a much higher dose but not daily. I guess IV would be different; if for some reason it wasn't feasible for the patient to take the daily oral dose, it could be given by IV; I just don't remember hearing of it before.

It's great that he's doing better in some ways, his kidneys showing recovery, etc. You are right to want to get him to a vasculitis specialist. That would normally be a rheumatologist, but with kidney involvement, some people's primary WG doc is a nephrologist with vasculitis expertise. I would think having both, who could work together, would be the best. Getting him to the hospital that can wean him from the sedatives and ventilator sounds good, but ultimately he should be seen at a vasculitis treatment center like CC, and you are lucky to have that in Florida.

I haven't heard of CTX causing delirium or hallucinations, but don't know that it isn't possible. I have heard of prednisone, especially in very high doses like he was getting for a few days, causing psychotic-like effects. Is he still on prednisone? Even the typical high daily doses like 40-60mg, or any amount at all, can be very problematic for some people.... not necessarily delirium or hallucinations, but aggression and agitation. Others of us have a lot less problem with it.

[Rosebud1029]

He lost a lot of weight so he actually went down to about 148 pounds. They had to do all the medications through the IV after he was put on the ventilator. I believe he is on 40 mg right now (not 100% sure) I am four hours away at school, so I get most of the updates from my mom back at home. I am hoping that maybe getting him to this specialized care unit, getting a vasculitis specialist there, and then once he is off the sedation and vent going to the Cleveland Clinic. I am hoping that is the best option. I am not sure if the Cleveland Clinic has an inpatient specialized care unit for weaning off sedation/the ventilator. I tried looking it up, but it seemed like an outpatient rehabilitation. Not sure though

[renidrag]

Cleveland Clinic is where your Dad needs to be.
Dale

[annekat]

He lost a lot of weight so he actually went down to about 148 pounds. They had to do all the medications through the IV after he was put on the ventilator. I believe he is on 40 mg right now (not 100% sure) I am four hours away at school, so I get most of the updates from my mom back at home. I am hoping that maybe getting him to this specialized care unit, getting a vasculitis specialist there, and then once he is off the sedation and vent going to the Cleveland Clinic. I am hoping that is the best option. I am not sure if the Cleveland Clinic has an inpatient specialized care unit for weaning off sedation/the ventilator. I tried looking it up, but it seemed like an outpatient rehabilitation. Not sure though At 148 pounds, 125mg/day of CTX does sound about right. It cleared up my lung involvement fast and it sounds like it is already helping his kidneys. I would think a place like CC would have the ability to get him off the sedatives and ventilator, but I understand your concern about them possibly not having a specialized care unit for that. I do agree with Dale that he should get to the CC sooner rather than later. Hopefully, the first place would be able to get him off that stuff fast and he could then move on to where he needs to be.

[mrtmeo]

Yeah I would not be surprised if any of these drugs are causing this I'm not sure if it would be a better idea to consider the Cleveland Clinic or if going to the specialized care unit and getting a vasculitis specialist there who is more involved, but they have to do more than they are doing to get him back to normal. I am not sure which ANCA it is. The doctor never confirmed which type it was. I will try to ask tomorrow. Thank you for the information. I contacted the Vasculitis Foundation and hopefully they will get back to me
They usually respond by the next day.
Also, they provide free consultation to physicians by vasculitis experts.
Look up steroid psychosis and see if it matches his symptoms.

[Rosebud1029]

Thank you. I think it would be. I am going to call tomorrow morning

[Rosebud1029]

Yes I am going to call CC tomorrow and see what they say. Thank you for your help

[Rosebud1029]

I will definitely do that. Didn't know about this website. Thank you

[Lisa B]

This sounds very similar to when my mother was in intensive care. She was initially sedated for two weeks and it took about 3 or 4 days for her to come round totally. She was very restless and wasn't herself which the doctors put down to the cocktail of drugs. This was her first episode in intensive care. However 4 years later she was sedated for 4 weeks and they did it differently by stopping the propofol each day just so she started to come around and then they put it back on. Apparently it makes it easier. When they eventually stopped it for good it was a much better experience for all of us than the first time.

[Thinker]

It sounds like he is getting the correct treatment for treatment for his vasculitis with the Cytoxan, prednisone, and plasma exchange and that he is responding positively to it. I'm sorry to hear about his delirum, agitation, and confusion. I don't know how old your father is but older people tend to have more difficulty metabolizing medications and it is not uncommon for an older person to react this way to sedation or anesthesia. It should improve with time and as they are able to taper/discontinue the sedation. It can be a slow process though. The hospital that specializes in this type of complex patient may be a good option for him. You said you are going to school four hours away and hearing a lot of information through your mother. Would it be possible for you to take a day or two off during the week to try and speak to his doctors, nurses, and social workers yourself firsthand? You may get more information and better answers to your questions especially when doctors are in patient's rooms doing their rounds. Weekends are not a good time to get information as the regular staff and doctors are not there. I'm sure this experience has been very upsetting for you and your family. I hope he show some improvement soon.

[JeanMarie]

I'm with Thinker on this. You don't give Dad's age but I had bad experiences with 2 older relatives who were hospitalized & had anesthesia. They both eventually returned to normal. Hopefully your Dad will be better soon as well. Prayers & Good Thoughts for you & your family.

[mrtmeo]

Anesthesia usually contains a benzodiazepine which older folks can have adverse reactions.

[Rosebud1029]

My father passed away yesterday morning. Somehow his kidneys started failing again and his lungs filled up with fluid. The doctors don't understand it because the day before they did an X-ray and there was no fluid and his kidneys were stabilized and improving. Thank you everyone for your help.

[renidrag]

Sorry for your loss, so sudden.
Dale

[Debbie C]

OMG..rosebud.I don't know what to say.. I am SOOOO Sorry to hear this about your Dad. I haven't been on here in the last couple of days and just read all the posts last night. I am sitting here crying with you because you never know what to expect...just when you think things are going good this disease will take over . My prayers are with you and your family and I hope that that you can find some peace knowing he is not suffering :sad:

[mrtmeo]

My father passed away yesterday morning. Somehow his kidneys started failing again and his lungs filled up with fluid. The doctors don't understand it because the day before they did an X-ray and there was no fluid and his kidneys were stabilized and improving. Thank you everyone for your help.

Oh no!
I am so sorry and please send my sincere condolences to your family.
It just doesn't make any sense when he seemed to be doing so well.
I really don't understand how they could give him Ativan, a benzo which is notorious for causing respiratory suppression.
Sleeping pills can kill, drug firm warns | Society | The Guardian (http://www.theguardian.com/society/2004/dec/05/health.medicineandhealth1)

I wish you well and if you want support we are here for you.

[Jaha]

I am just reading your posts Rosebud and I am so sorry for your loss. This disease is so unpredictable and is so complicated. My thoughts will be with you and your loved ones thru this time of terrible shock and grief.

[Mas78]

I also just read these posts, Very sorry to hear of your loss.

[Thinker]

I am so sorry for your loss. This can indeed be a very unpredictable and serious disease, as unfortunately we are reminded of quite often on this message board. We will keep you and your family in our thoughts and prayers.

[Pete]

So sorry to hear about your Dad.

[annekat]

I am shocked to hear of the sudden loss of your father. I am very sorry, and my heart goes out to you and your entire family, and everyone else who knew and loved him. If only he could have been helped before this happened. You really put out a mighty effort to understand and make sense of what was going on with him. My thoughts will be with you now as you adjust to this loss.

[Rosebud1029]

Thank you everyone. We are all in shock because this happened so fast.

[Debbie C]

Rosebud,when you find the time , I know you said you all lived in south Fl. if thats where u want, vdub can place a candle on the map for him, just let him know.

[annekat]

Rosebud,when you find the time , I know you said you all lived in south Fl. if thats where u want, vdub can place a candle on the map for him, just let him know. Absolutely. We have candles on the map for people we knew well and for those we had just started to become familiar with. Your dad counts as much as anyone and we'd be proud to have his candle on our map. There was just recently a post from vdub reminding people about the map. You might want to touch base with him on this, and I'm sure he'd be glad to hear from you. And check out the map link in blue at top of page.

[Rosebud1029]

Okay that would be very nice. I will get in contact with him

[drz]

What a horrible tragedy and shock to the family! My condolences to your family. It seems many of the deaths reported here from GPA happened rather suddenly and unexpectedly and they are usually a shock to everyone even when there has been a long decline in health. I think we all share a sense of loss whenever we lose another member from here.

[kaysee]

Rosebud,
I am very sorry for your loss and will be praying for you and your family.

[Rosebud1029]

Thank you. It just does not make sense that his body was recovering so well for four weeks with what they were giving him and in a matter of hours he could have a flare up so bad that even with the ventilator at 100% and with the continuous dialysis they were doing, it was not enough. I guess I will never understand. I hope they find a cure soon.

[Alysia]

I cry with you.
for your dad.
for my beautiful Phil who passed away on Oct 2. endless tears flowing...
for our Barabra,
and for Dodi's daughter, and for the son of the lady from south africa (sorry that I forgot her name),
and for Jack and Al and Lightwarior...
and for those weggies I dont know who passed...
lighting candles...
rest in peace sweet weggies. not one more.

http://www.catholicchapterhouse.com/blog/wp-content/uploads/2013/01/Candles.jpg

[mrtmeo]

And to Rosebud1029 who just lost her dad when he was responding well to the treatment.

[JeanMarie]

I am so sorry for your loss. May you and your family find peace at the terrible time. My prayers for you