Encephalopathy; off in the distance but now in the present.

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Helper of Mankind
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Date Joined May 2009
Total Posts : 40
   Posted 7/23/2009 8:04 PM (GMT -7)   
Good Evening everyone!  I have read other threads on this day all threads regarding  encephalopathy.  My sibling has Cirrhosis of the Liver.  In the beginning when he received his diagnosis I began a journey to obtain all the information I could get on this diagnosis.  I know the stages and most of the complications.  This site has been very helpful and I love the internet and google.  Although they are extremely helpful, I still feel that the quality information comes from all of those who are living this terrible nightmare. 
 
My sibling has been under this cloud (diagnosis) for approximately  3 months.  During this time he has been noncompliant, continuing to partake in alcohol.  He has had three hospitalizations.  This most recent being the worst.  I have been enlightened by another post of a member who has a husband looking for info on the encephalopathy complication.  During this past hospitalization my brother had:  elevated ammonia, hyperglycemia, hypertension, epistaxis times three days, headache that wouldn't go away, poor gait, confusion and passing blood rectally.  During his 2nd day of this hospitalization he went missing, local authorities were enlisted to locate his whereabouts.  My mother was contacted and told about the elopement/AMA.  After she hung up the phone, my brother got off a car at the end of the driveway in hospital pajamas, and was very confused.  He thought he was at the YMCA and that they were putting babies in his bed. 
 
He was returned to the hospital,  guards were posted outside the door, sedatives, antipsych & antianxiety meds were administered for the next 24 hours.  These meds ontop of the existing state of confusion we thought were causing the agitation, poor gait, SOB he was experiencing and the confusion.  To get to the point.  Not once did I think about encephalopathy.  During the 3rd night it was observed that he was having episodes of apnea.  They ordered a sleep lab.  I inquired about O2 sats, and CO2 blood levels.  Neither were being done.  He also had a psych consult.  Amid all of the going ons and the labs, nurses and doctor not once mentioned encephalopathy.   All of the symptoms above fall into everything I have read of encephalopathy. 
 
He is home now after one heck of a storm.  He still gets agitated, moreso than ever.  His doctor called today and has requested him to have an EMG, why we don't know.  Possibly to confirm encephalopathy?    At what point does/will the doctor say "done"  cannot do anymore  or  "that hospice is resource that should be considered at this point"   Since his diagnosis is so recent and he has had, it seems severe hospitalizations and we are where we are,  how long before he is  in real trouble?  if not already.  Does the encephalopathy  diagnosis continue as in, progressive,  no reversal?  Is the encepalopathy an indicator or precursor to active liver failure? 


"To others we grow old.  But, not to brothers and sisters,  we live in each other's hearts, share private family jokes.  We remember family fueds, keep each other's secrets and grieve family sorrows.  We live outside the touch of time............."  ............Author Unknown

Post Edited (Helper of Mankind) : 7/23/2009 9:10:54 PM (GMT-6)


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 7/24/2009 8:42 PM (GMT -7)   

Helper, are they not prescribing Lactulose for your brother?  It seems clear to me that he has encephalopathy.  If they did a blood test for ammonia, they would know.  Have they done this?  An EMG is an electromyogram, which is used to test the electical activity of muscles.  It is sometimes combined with a nerve conduction study.  I can't imagine why they would be doing this.  Are you sure it isn't an EEG he is having?  That would be an electroencephalogram, to look at electrical activity of the brain.  This could be used to rule out stroke or other brain damage.  However, the first thing they should do is test for ammonia levels.  If they happen to be normal, then an EEG or MRI of the brain might make sense.

I agree with you that all of his symptoms seem like encephalopathy.  Did they ever measure the O2 sats and CO2?  Was he returned to the hospital? 

The only way you are going to get your questions answered is to confront the doctors.  Ask for a prognosis and if hospice is warranted at this point.  As you probably know from reading these posts, doctors don't like to be pinned down as to how long a patient has to live, and rightly so.  They are not God.  However, if you ask for an "educated guess" they may feel more comfortable in giving you a time frame.  Every patient is different, though, and some who were thought to be dying (such as myself) have overcome their physical challenges, with excellent medical help, and are still here.  I am not very impressed with your brother's medical care, but I also think that because of his active alcoholism they are not going to go out of their way for him.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Helper of Mankind
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 7/26/2009 12:34 AM (GMT -7)   
Timeless, I could only imagine what is running through one's mind as the threat or imminent "death" approaches. I cannot begin to compare myself. I have taken the name of that novel. I will read it. I look everywhere for insight. I know I can't help my brother in a way that I want to. I believe in the saying "you can't help someone, who won't help themselves" when I hear myself saying this I wonder can an alcoholic be held responsible? What do you think? I get so mad at him. I don't tell him, but I think it. I counteract visions of him struggling right now, with visions of him in a healthier state. One where he is scooting or shuffling his feet to avoid a hornet, another of him mowing grass or even shoveling a driveway. I don't know that my mom, brothers and sister will ever be able to celebrate his life after his death. I will help as much as I can. I am being dragged and pushed down this hallway.........it's dark and it's very scary. The hardest part of it is the fact that my brother is down there, he's alone and I want to get to him.......... Thank you, Timeless.

"To others we grow old.  But, not to brothers and sisters,  we live in each other's hearts, share private family jokes.  We remember family fueds, keep each other's secrets and grieve family sorrows.  We live outside the touch of time............."  ............Author Unknown


Helper of Mankind
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 7/26/2009 12:51 AM (GMT -7)   
Hep 93, during my brother's most recent hospitalization, everything was out of wack. B/P, Glucose, Ammonia, PT/INR, Respiratory, Rectal Bleed, Headaches. They immediately started an IV and started the lactulose 5 times a day. The started diuretics, did a colonoscopy, gave vitamin K, did labs daily. At the same time they were battling DT's he had withdrawal from alcohol. I was not there. I live roughly 3500 miles away. I did however keep in touch daily. I spoke with nurses of the 3rd shift nightly, to get an overview of his treatments each day. I then in turn translated the terminology to my siblings. I'm sure the attending physicians are treating him accordingly. But I have to question the sequence in which the tests were ordered. I was also very upset to discover that they were not concerned about the SOB and diff breathing. I was very disappointed and shocked to find out, not once had they done an ABG or O2 sat on him. The doctor will not speculate or give a prognosis. I do feel however that this is it.

Two days after discharging, he simply stated to his wife that he needed a drink. He went and got one. He is aware. I have explained to him, what is next. I know there is no fight left for me. I cannot fight something I cannot see. I feel the best thing I can do now is to be silent and wait for him to let me know when I can help.

"To others we grow old.  But, not to brothers and sisters,  we live in each other's hearts, share private family jokes.  We remember family fueds, keep each other's secrets and grieve family sorrows.  We live outside the touch of time............."  ............Author Unknown


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 7/26/2009 11:47 AM (GMT -7)   

I agree with Rick.  The alcoholic who knows full well what his drinking is causing and continues to drink...is responsible for what happens.  The caveat here is that the addiction is stronger than the knowledge of what it is doing.  A person has to be so totally sick and tired of being sick and tired that he is willing to go to any lengths to overcome the addiction.  Why some are chosen for sobriety and others are not is something we cannot know.  But I do know it is only when an alcoholic waves the white flag of surrender and acknowledges powerlessness over alcohol that he begins to gain some power over it.  It is a lifelong commitment, one day at a time.

I think you have made the right decision to wait until your brother asks for help before doing anything more.  You are undoubtedly the one waving the white flag right now, as you realize that you cannot control your brother's alcoholism.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Helper of Mankind
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 9/18/2009 7:17 PM (GMT -7)   
Wanted to say Good Evening to everyone. I have made my transition from the West to East coast. My brother is in a different state of mind these days. He's more or less taken his foot off the gas pedal, if you will. He hasn't stepped on the brake but he is making a conscious effort to slow down to smell the coffee........... I am able to take a deep breath. It seems as though I am able to forget about his illness during the day at least once or twice. He gave up one of his two jobs, he is spending more time with his children and grandchild. He is basking in the affection from his new wife. Public displays at that. I know that he is taking his meds. He is getting rest, and nourishment. Yesterday, however he did lose his balance and was not quick enough to catch himself. His wife, very discreetly I might add, said that she said to him "honey, you sit right here and I will get it done for you. She used tact, and added a bit of sugar. She is so good. She's all of the ingredients that he needs.....I feel like an angel is with him........ He and I have had one or more conversations since I have been home. He never discusses his illness, but I feel that he is aware of the damage that has been done. .........................Tomorrow's a new day, Never say Never.....Goodnight.

"To others we grow old but  not to brothers and sisters.   We live in each other's hearts, share each others dreams and laugh at private family jokes. We remember...... family fueds, keep each other's secrets and grieve family sorrows........... We live outside the touch of time."  Author Unknown


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 9/18/2009 8:49 PM (GMT -7)   

Helper, thanks for the update.  It sounds like your brother is aware of the seriousness of his disease and that it is time to confront it...or at least begin to.  His wife sounds like she is good for him.  Hope your transition is going well.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Helper of Mankind
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 11/15/2009 10:03 PM (GMT -7)   
Hello to my Forum friends.
 
I need someone to give me their insight.  First, I never thought I would be back on the forum sight this soon.  I often wondered what everyone was doing.  I finally got my nsg license transferred......holidays are coming......hectic.  Gotta stay busy, to combat that state of "thinking".
 
My brother went to the hospital today after some talking.  It seems that he is swollen all over, having nosebleeds and complaining of chest pain.  I got a call from his wife who in turn said the doctor relayed the following:  bp normal, temp normal, o2 sats not much below normal, o2 at 2liters, he has fluid buildup around his lungs also states that:  his red blood cells are unable to carry protein due to the ammonia in his blood, states that is liver has no functioning at all?  what does that mean!
 
can a liver not function and someone remain with us?  Is this a stupid question? 
 
I spoke with my brother and i could hear that noise in his voice so i knew the fluid bit was a reality.............he is scared and I'm saying to myself please do not let this nightmare begin again.................
 
somebody point a finger and tell me which way is out..................

"To others we grow old but  not to brothers and sisters.   We live in each other's hearts, share each others dreams and laugh at private family jokes. We remember...... family fueds, keep each other's secrets and grieve family sorrows........... We live outside the touch of time."  Author Unknown


worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 11/16/2009 3:20 AM (GMT -7)   
He probably has ascites and will need to be drained but if his liver is not functioning he will not be able to survive. Good luck and I hope he is netter and that there was miscommunication
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/16/2009 12:49 PM (GMT -7)   

Hi, Helper.  Was nothing said about emergency transplant?  The fluid buildup can be relieved with large doses of diuretics and/or draining.  I would say that large doses of Lactulose should be given for the ammonia; however, if his liver is not functioning at all, these measures probably won't help.  I think you need more information; i.e., is he in total liver failure and what about an emergency transplant?  However, if he never stopped drinking, he won't be eligible for one.  He would need 6 mos. of documented sobriety in AA or alcohol counseling.  You had previously posted that he was easing up on his drinking, but I can tell you that unless an alcoholic is ready to stop, that won't work.  They will be right back to their regular intake in no time.  I suspect that is what may have happened.

My thoughts are with you.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 11/16/2009 6:36:03 PM (GMT-7)


Helper of Mankind
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 11/16/2009 4:13 PM (GMT -7)   
Hep93, hello.  There is no talk of transplant.  We have a bigger battle and it's called medical attention. (period)   Since that post I have spoken with his Doctor.  His admitting diagnosis is ESLD.  His liver enzymes are elevated.  O2 sats 97% on 3L.  No measure done on room air yet.  No nebulizers being done.  Chest xray done today.  Intravenous Aldactone, they are starting lasix tomorrow.  They have increased his lactulose 30ml four times a day.  He is accepting that order.  They have put him on a low protein, low sodium diet.  His PT/PTT is elevated, they may start Vitamin K.  He has crackles in both bases, of his lungs.  He has bruising caused by the swelling?  His hemoglobin is 99.  They are going to allow him to use a urinal if he is compliant in keeping a strict eye on his output.  If they feel the diuretics are not working then they are going to surgically place a drain. 
 
He is not having bad withdrawals from the alcohol, he is going on 24 hours...... at present he has the shakes......with the options of valium and ativan.  I have not come out and asked if he is total liver failure.  I have not asked for a prognosis.
 
My mom is about to be given a date for a kidney transplant.  She is 62.  I have 3 children who are all having birthdays right now........three days in a row.......18 year old daughter, 12 year old son and 5 year old son............Christmas is coming.   I don't know how to deal a prognosis to my mom.  The only thing that gives she and I comfort is knowing that my brother is comfortable......and not in pain.
 
My mother has stated that if it's her son's time to go then she will go with him, she feels that she cannot bear to deal with his death and go on to a transplant for herself.  We have alot of extended family and although I know their intentions are sincere, I have a hard time when they are constantly asking about wether it's true my brother is in bad shape.  How do I keep these people who we love from asking these intrusive and hurtful questions about my brother?  They ask in front of mom and her morale is down.......I believe the attention given to my brother's illness is not always sincere......and she does not want a parade or an announcement.  She wants to maintain the privacy he has always asked for.....
 
I often feel numb.  I look into my 5 year old son's eyes and for a small amount of time I can escape all of the above.  I have to be here for my children.........
I am torn.
 
As such, this is life.  I'm not weary of here or there I just know that I'm where I am needed for the moment.  Thanks Hep93.

"To others we grow old but  not to brothers and sisters.   We live in each other's hearts, share each others stories  and laugh at private family jokes. We remember...... family fueds, keep each other's secrets and grieve family sorrows........... We live outside the touch of time."  Author Unknown


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/16/2009 6:42 PM (GMT -7)   

Helper, it seems like your brother is getting good care for now.  Your mom is younger than I am, so I hope she doesn't give up on her life if he doesn't make it.  She is still young in today's world.

As for those who inquire about your brother, you might just say, "When there's news, we'll let you know," or the ever-innocuous "As well as can be expected."  No need for details.  wink

Your primary focus really must be with your family.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


dontknowwhattodo
Regular Member


Date Joined Sep 2009
Total Posts : 44
   Posted 11/16/2009 7:38 PM (GMT -7)   
Helper,
My thoughts are with you, it is such a hard, and confusing thing to go through!  I wish you the best... take care!

Helper of Mankind
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 1/27/2010 8:16 PM (GMT -7)   
Good Evening! Hello Hep93; & Timeless.....


It's back and I'm speechless. First, my mom had her kidney transplant on 12/31/09, her donor was my neice; her grandaughter. Everything went well. She is almost 4 weeks post op. She's back home.

During the time my mom was receiving her kidney, my brother was in the hospital also. Lately, he has been falling more. Tonight, his wife sent me an email stating she took him to ER to be evaluated for dizziness and loss of balance. They did labs and from what I understand they came back with no surprises. A chest xray was done it came back negative also for infection. A short while after, he called on the phone and I could sense the fear in his voice. ........... For the past month, I have observed from afar all of the changes taking place, changes that no one else will acknowledge. He has no balance, posture is slumped somewhat not upright anymore, appetite poor, comprehension........different, limited? not sure how to describe it.......... He listed off all of his symptoms and the things that are happening to him for the past week. They were textbook symptoms for the cerebral degeneration. Progression. Is my thought. I feel the darkness creeping up on me, I can't or don't have the heart to say to him that part of his brain may be forever changing and that it's neurological...........they are doing a CAT scan. I wish I could prevent the Doctor from dealing a prognosis or relay his findings to him as such. I don't know how to protect him or lighten the load................it has been 10 or 11 weeks since his last drink.............what to do now....................again, someone point the finger and show me the way out.

"To others we grow old but  not to brothers and sisters.   We live in each other's hearts, share each others stories  and laugh at private family jokes. We remember...... family fueds, keep each other's secrets and grieve family sorrows........... We live outside the touch of time."  Author Unknown


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 1/27/2010 10:37 PM (GMT -7)   

Hi, Helper!  Good to hear that your mom got a kidney transplant and is doing well.

It's also good that your brother has not had a drink in so long.  It could be that his ammonia levels in his brain are rising and he needs an increase in Lactulose, if he is on it.  Or there could be neurological reasons for his recent symptoms.  A CT scan will tell more.

If he is expected to live 6 mos. or less, Hospice could be called in.  A doctor would need to make a referral.  Then he could get nurses at home.  Or perhaps he could get some visiting nurse care, without Hospice.  Other than that, there's not much you can do.

Please do keep us posted--and don't forget to take care of yourself.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Helper of Mankind
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 11/26/2010 10:18 PM (GMT -7)   
Good Evening/Morning,

...............where to start, what to type. My brother has been alcohol free for over a year..............november 15th 2009 was the 1st day of sobriety.

Tonight, he is in the hospital with an Albumin of 30. Ascites that cannot be addressed due to the risk factors associated with the hypoalbumin He is in oxygen due to sleep apnea.

what to say what to do.......................I am lost.

"To others we grow old but  not to brothers and sisters.   We live in each other's hearts, share each others stories  and laugh at private family jokes. We remember...... family fueds, keep each other's secrets and grieve family sorrows........... We live outside the touch of time."  Author Unknown


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 11/27/2010 11:54 AM (GMT -7)   

Helper, very good to see you back here!  What great news that your brother has been sober for over a year!  That is a year more than he may have had if he had continued to drink.  Did he just stop on his own or did he go to AA?  As for the albumin issue, I believe they can give him medication for that.  Once stabilized, they can address the ascites.  Has he ever been drained?  Is he on diuretics?  Any other issues?  Was he put on Lactulose?  I know encephalopathy was an issue at one time. 

Note:  Melissa Palmer in her book Hepatitis & Liver Disease states this about albumin:  "When the liver becomes severely damaged, it loses its ability to make albumin."  Also:  "A low albumin level in general is an indicator of poor health and nutrition..."    How is his appetite and what is his diet like?  He should be taking at least a multivitamin.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 11/27/2010 12:01:49 PM (GMT-7)


Helper of Mankind
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 11/27/2010 6:20 PM (GMT -7)   
hep 93, you are the light that shines the brightest at times like this. I was hoping you or timeless would come and reply..................just love this sight. Thank You. So uplifting, it's magic.

Yes he has been sober, without AA. He stopped on his own after the hospitalization that took place during the time my mother was getting a kidney transplant..........they were both in the hospital and very sick.

His albumin is 30. He is swollen all over, experiencing sleep apnea at night and grouchy at times. I was flabbergasted when they gave the diagnosis for the most recent admission yesterday. I expected CHF but not low albumin. His cells are leaking into the surrounding tissue area. He went in for shortness of breath, edema, rash on chest..........his o2 sat on room air was 99%, afebrile, respirations were labored after activity (walking). BP was 145/99. They did not mention a high ammonia level, but did increase his lactulose, diuretics and started him on ativan and IV albumin. His potassium was normal range. They want to drain off some fluids from his abdomen but are afraid to deplete his albumin level completely. He has never had this procedure done before. However, I do think that once they do drain off some of the fluids his chronic back pain may simmer down or fade. He has bad back pains....

I spoke with his nurse this a.m and she said that he feels as though the swelling on his legs and abdomen has gone down somewhat. His appetite is good, but he does not eat healthy. He does not restrict himself from anything..........actually he gave up coffee...... His nutrition? he eats everything. He does take a multivitamin.......


Do you think all of this is critical?.....................I am concerned about the what ifs.

Thank You Hep93, I hope your Holidays are filled with laughter and lots of time to reminisce and enjoy life. Sincerely Helper of Mankind......

"To others we grow old but  not to brothers and sisters.   We live in each other's hearts, share each others stories  and laugh at private family jokes. We remember...... family fueds, keep each other's secrets and grieve family sorrows........... We live outside the touch of time."  Author Unknown


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/27/2010 7:56 PM (GMT -7)   
Helper, that's very nice of you. Thank you.

When ascites gets really bad, it can press against the lungs causing shortness of breath (SOB) or labored breathing. The problem with draining (paracentesis) is that it tends to become frequent once it has started, and there is a risk of infection associated with it. Has a TIPS procedure been mentioned? Also, you might want to ask about having Xifaxan added to his Lactulose regimen.

It looks like a mixed bag. The IV albumin should help him. Normal is 35-50 g/L.

I don't think he is in a critical state right now, but things can change instantly. Here's hoping they get him stabilized. His staying sober goes a long way towards making him healthier...probably the most important thing he could do.

Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Helper of Mankind
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 11/28/2010 8:31 AM (GMT -7)   
Good Morning, everyone
 
Received a phone call this a.m. from my sister in law, it seems my brother is confused and pacing this a.m.  After speaking with his nurse I am told there are no recent lab values to look at Albumin last level was 30 (normal range 34-50) O2 sats are normal, he has been continent.  The nurse states that he does not complain of pain, has been redirected x1, he went into the wrong room.  He had IV Albumin and Lasix yesterday and is getting the Lasix by mouth today.  Prior to our conversation he was given an order for 1mg of Ativan.  In the last 24 hours they have pulled off 600 ccs of fluid. 
 
I asked what his ammonia level was and they didn't have one..........................?  I don't get it.  Shouldn't Ammonia be the start point?  I am waiting on his doctor to call me.  I asked what the plan was and the nurse couldn't tell me.  What to do. 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/28/2010 12:02 PM (GMT -7)   
Ask about ammonia level and also about adding Xifaxan. Keep us posted!

Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Helper of Mankind
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 11/28/2010 8:26 PM (GMT -7)   
Hep93, Thank you. I spoke with the Doctor this morning, he called me at my home. He didn't know what to say when I stated I was alarmed at not knowing his ammonia level. My sister in law was told earlier in this whole ordeal that the ammonia test was to costly and was not a good indicator of anything at this point. But later on in the day, labs were done. I am waiting to see. I also asked the Doctor for the plan of care, they stated they will address his sleep apnea. I asked about fluid restriction, since my brother and wife were unaware of any. The doctor stated most definitely. Tomorrow I am going to compile a packet on the type of diet he will need to follow and other things that he should be changing in his forever changing lifestyle.

I informed the Doctor that my brother will be inquiring about a transplant starting this week. We are going to get this done, I pray we can get him standing up again. Thank you, for being there with your insight.

"To others we grow old but  not to brothers and sisters.   We live in each other's hearts, share each others stories  and laugh at private family jokes. We remember...... family fueds, keep each other's secrets and grieve family sorrows........... We live outside the touch of time."  Author Unknown


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/28/2010 9:34 PM (GMT -7)   

Helper, good for you!  Stay on the doctor's case.  It's well known that patients get better care when they have family visiting and asking hard questions--being a healthcare advocate for their family member or loved one.  I have no family to speak of, so have to do this for myself.  It helps that I have medical terminology background.

Please let us know what the lab results are and what the doctor says about fluid restriction and diet.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 11/28/2010 9:38 PM (GMT -7)   

Helper. I did find Ammonia levels are not always done unless patients mental status declines. Dougs Dr said that each person tolerates different levels ie: a 60 could have one person totally out there but someone else be functioning, with Doug I had to gauge by behavior and how steady his hands were. You may find that it isnt a test always done anymore on a regular basis. We had many examples of that being sometimes not a good gauge, I have had him so confused he wouldnt know where he was and levels be close to 150 yet on a different occasion be in a semi comatose state unreactive to stimuli of any kind and levels be under 100 so it is tough to judge. We had one episode where he was sent to the city on a vent, ammonia off the chart. I show up to ICU in boston later that afternoon and he is sitting up asking me if I brought his laptop..... why would I bring a laptop to a person in a coma I am not sure but the look I gave at that question ended the discussion. In too many words..... behavior is the best judge. Hang in there and please go over the ideas of a 3 ring binder to keep all info and care plans in!

Sue


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/29/2010 12:16 PM (GMT -7)   

Sue, you are right about them gauging behavior.  I have never had an ammonia test, to my knowledge (and I have ALL of my lab reports); however, in the doctor's notes she always says "no encephalopathy."  How would she know that?  Strictly based on my behavior.  However, in the case of Helper's brother, I feel an ammonia test is warranted.

Rick, thanks for all the info!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland
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