Aa
When to goto hospital?
My wife has end stage alcoholic liver disease. When should I consider taking her to the hospital for HE symptoms? She has been on lactolose three times a day for a week, Doctor just prescribed rifaximin today to see if that helps. We see the gi doctor tuesday then after that hopefully liver specialist
COMMUNITY LEADER
As Nan said every patient has there own particulars which only their doctor's knows.
A poor appetite and poor diet are common in patients with ESLD. Patients need to be taught to eat a proper diet to get the nutrition required to prevent further deterioration of their health. A low protein diet for those with ESLD is an old myth and is counter productive to the patient and their prognosis.
All hepatologists and transplant center doctors know that a healthy diet is essential for the best outcome. Poor nutrition leads to muscle further wasting, weakness and can lead to an increased risk of serious complications from their liver disease. We see many ESLD patients on our transplant waiting list needing IV fluid replacement and feeding tubes in order for them to be healthy enough to be able to have transplant surgery.
**********************************************************************
"Nutritional considerations in end-stage liver disease
Simone I Strasser1,*, Helen Vidot2
Journal of Gastroenterology and Hepatology Volume 26, Issue 9, pages 1346–1348, September 2011
Protein–energy malnutrition (PEM) is a common feature of alcoholic and non-alcoholic liver disease, and might be present in 65–90% of patients with cirrhosis and in up to 100% of patients waiting for liver transplantation. Patients present with depleted fat stores and varying degrees of muscle wasting and reduced muscle strength.
Short-term survival is reduced in malnourished patients with cirrhosis, and PEM can adversely affect outcomes for patients on the waiting list for transplantation, as well as post-transplantation morbidity and mortality. Malnutrition in cirrhosis is implicated in increased risk for infection, increased severity of ascites, and the development of hepatic encephalopathy. Repeated episodes of overt hepatic encephalopathy might result in recurrent hospitalizations and persistent cumulative deficits in working memory, response inhibition, and learning."
- See more at: http://hepatitiscnewdrugresearch.com/nutrition-in-end-stage-liver-disease.html#sthash.CulbmuE5.dpuf"
She needs to see a hepatologist ASAP. Unfortunately nothing happens quickly when it comes to End-Stage Liver Disease and liver transplant. She need to be cared for by a specialist that are knowledgeable and experienced in caring patients with advanced liver disease and people needing liver transplantation. A GI or any other doctor is not trained in or experienced in caring for people with ESLD only transplant center doctors and their staff are.
"She hasnt had any alcohol in over 30 days, will that count towards the 6 month sobriety? "
Each liver transplant center has their own criteria (how long, attendance at AA meetings, etc) regarding alcohol use and eligibility for being listed for liver transplantation. This issue will be discussed during her initial transplant evaluation at the transplant center.
Hang in there.
Hector
A poor appetite and poor diet are common in patients with ESLD. Patients need to be taught to eat a proper diet to get the nutrition required to prevent further deterioration of their health. A low protein diet for those with ESLD is an old myth and is counter productive to the patient and their prognosis.
All hepatologists and transplant center doctors know that a healthy diet is essential for the best outcome. Poor nutrition leads to muscle further wasting, weakness and can lead to an increased risk of serious complications from their liver disease. We see many ESLD patients on our transplant waiting list needing IV fluid replacement and feeding tubes in order for them to be healthy enough to be able to have transplant surgery.
**********************************************************************
"Nutritional considerations in end-stage liver disease
Simone I Strasser1,*, Helen Vidot2
Journal of Gastroenterology and Hepatology Volume 26, Issue 9, pages 1346–1348, September 2011
Protein–energy malnutrition (PEM) is a common feature of alcoholic and non-alcoholic liver disease, and might be present in 65–90% of patients with cirrhosis and in up to 100% of patients waiting for liver transplantation. Patients present with depleted fat stores and varying degrees of muscle wasting and reduced muscle strength.
Short-term survival is reduced in malnourished patients with cirrhosis, and PEM can adversely affect outcomes for patients on the waiting list for transplantation, as well as post-transplantation morbidity and mortality. Malnutrition in cirrhosis is implicated in increased risk for infection, increased severity of ascites, and the development of hepatic encephalopathy. Repeated episodes of overt hepatic encephalopathy might result in recurrent hospitalizations and persistent cumulative deficits in working memory, response inhibition, and learning."
- See more at: http://hepatitiscnewdrugresearch.com/nutrition-in-end-stage-liver-disease.html#sthash.CulbmuE5.dpuf"
She needs to see a hepatologist ASAP. Unfortunately nothing happens quickly when it comes to End-Stage Liver Disease and liver transplant. She need to be cared for by a specialist that are knowledgeable and experienced in caring patients with advanced liver disease and people needing liver transplantation. A GI or any other doctor is not trained in or experienced in caring for people with ESLD only transplant center doctors and their staff are.
"She hasnt had any alcohol in over 30 days, will that count towards the 6 month sobriety? "
Each liver transplant center has their own criteria (how long, attendance at AA meetings, etc) regarding alcohol use and eligibility for being listed for liver transplantation. This issue will be discussed during her initial transplant evaluation at the transplant center.
Hang in there.
Hector
Yes it was her doctor. She doesnt have much of apetite when she does feel like eating its fruit and jello. which is good i guess cuz they want her on low protein. Does the Gi doctor visit help? We go on tuesday. She hasnt had any alcohol in over 30 days, will that count towards the 6 month sobriety? I have a hard time getting her to doctor visits due to her HE and stamina issues going to rehab program right now would be impossible
Was it her doctor who said it's ok? My husband did take Benadryl when he had ESLD to help with the intense itching he had. Again, every person is different so be sure the doctor is giving the ok. My husband did see a GI/hepatologist first who then referred him to the liver transplant institute.
Going by a friend's husband's experience, it is very important she build up her stamina and nutrition in the meantime. They will not list her for transplant if she is in a very weakened state. She also needs to be in a verifiable alcohol rehab program. My friend's husband just made six months sobriety and they are reevaluating him now for listing. He has been working very hard to build up his physical stamina and nutrition.
Best to your wife. Let her know she can do this.
Nan
Going by a friend's husband's experience, it is very important she build up her stamina and nutrition in the meantime. They will not list her for transplant if she is in a very weakened state. She also needs to be in a verifiable alcohol rehab program. My friend's husband just made six months sobriety and they are reevaluating him now for listing. He has been working very hard to build up his physical stamina and nutrition.
Best to your wife. Let her know she can do this.
Nan
its unbelievable how helpful this is, really helps calm my nerves luckily my eldest son is home from college to help me. why do we have to see Gi doctor before liver specialist? this process seems to be taking a long time. During one of her follow ups after discharge from skilled nursing said she could take benadryl to help with sleep. was this bad?
Here is a link to excellent webinars on Hepatic Encephalopathy sponsored ny the American Liver Foundation. The latest one given today will be online in about a week.
http://he123.liverfoundation.org/resources/webinars/
As Hector said your wife's hepatologist should be consulted before any changes or additions in treatment are made. We are not doctors here and can only speak from our own personal experiences which may or may not be applicable to your wife's personal medical condition. So her doctors are the ones who will best guide you in her care.
This forum has been a Godsend in helping to keep my sanity through this. I suggest you keep coming back. You will get some incredible support here.
Nan
http://he123.liverfoundation.org/resources/webinars/
As Hector said your wife's hepatologist should be consulted before any changes or additions in treatment are made. We are not doctors here and can only speak from our own personal experiences which may or may not be applicable to your wife's personal medical condition. So her doctors are the ones who will best guide you in her care.
This forum has been a Godsend in helping to keep my sanity through this. I suggest you keep coming back. You will get some incredible support here.
Nan
COMMUNITY LEADER
All good advice Nan.
Yes Tylenol is the only analgesic a person with cirrhosis should ever take. Other drugs such as aspirin and NSAIDs can cause internal bleeding in cirrhotics with poor coagulation issues.
Also cirrhotics should only cautiously take any benzodiazepines such as are often used for insomnia. They can cause HE.
All meds, treatments, changes that may effect health should be run my the hepatologist FIRST.
Take care.
Hector
Yes Tylenol is the only analgesic a person with cirrhosis should ever take. Other drugs such as aspirin and NSAIDs can cause internal bleeding in cirrhotics with poor coagulation issues.
Also cirrhotics should only cautiously take any benzodiazepines such as are often used for insomnia. They can cause HE.
All meds, treatments, changes that may effect health should be run my the hepatologist FIRST.
Take care.
Hector
Hector has given you excellent information based on research as well as personal experience. I am a caregiver for my husband who has struggled with HE for almost four years. He was free of it for six months post transplant but unfortunately it returned as a result of severe recurrent hep c and bile duct damage which caused cirrhosis again of his new liver. He takes lactulose and Xifaxin to control it, though he stopped the Xifaxin during his HCV treatment as it was creating more HE.
The question you raise is one I have struggled with also. As you may imagine I have become very experienced in recognizing the signs of an oncoming bout of HE. It is for me the most difficult thing we have both had to deal with. Most of the time, it can be managed at home with lactulose and Xifaxin. However, when he has a fever along with the HE, I give him Tylenol also. If the fever persists. I know he probably has an infection going on and he needs to be hospitalized so I take him to the ER after contacting his liver transplant team.
It is very important that your wife not miss her regular doses of lactulose.
I know this can be very difficult at times especially when you have social plans outside the home. In my husband's case, Xifaxin has helped control it enough to where he could miss a dose of the lactulose if necessary. Everyone is an individual and you will need to see what works best for your wife.
Your wife is blessed to have a caring husband who will stand by her and help her through this. I know firsthand how difficult it is. Don't be afraid to ask for help. It can be very lonely when your partner in life is having these episodes. Stress can easily take a toll on you. Be sure to take care of yourself also.
I wish you and your wife the best and hope one day you can put this behind you. I hope she will soon be placed on a transplant list. A liver transplant will stop the HE in most cases and will save her life. She needs to be evaluated for transplant by a hepatologist at a liver transplant center. As her ESLD has been caused by alcohol, she will need to be sober six months before she will be listed for transplant.
Nan
The question you raise is one I have struggled with also. As you may imagine I have become very experienced in recognizing the signs of an oncoming bout of HE. It is for me the most difficult thing we have both had to deal with. Most of the time, it can be managed at home with lactulose and Xifaxin. However, when he has a fever along with the HE, I give him Tylenol also. If the fever persists. I know he probably has an infection going on and he needs to be hospitalized so I take him to the ER after contacting his liver transplant team.
It is very important that your wife not miss her regular doses of lactulose.
I know this can be very difficult at times especially when you have social plans outside the home. In my husband's case, Xifaxin has helped control it enough to where he could miss a dose of the lactulose if necessary. Everyone is an individual and you will need to see what works best for your wife.
Your wife is blessed to have a caring husband who will stand by her and help her through this. I know firsthand how difficult it is. Don't be afraid to ask for help. It can be very lonely when your partner in life is having these episodes. Stress can easily take a toll on you. Be sure to take care of yourself also.
I wish you and your wife the best and hope one day you can put this behind you. I hope she will soon be placed on a transplant list. A liver transplant will stop the HE in most cases and will save her life. She needs to be evaluated for transplant by a hepatologist at a liver transplant center. As her ESLD has been caused by alcohol, she will need to be sober six months before she will be listed for transplant.
Nan
COMMUNITY LEADER
Basically you should take her to the hospital when her symptoms become unmanageable for you and she will often not able to care for herself because of these symptoms. She may become so disoriented she doesn't know where she is or what is going on. Obviously she will be in no condition to take more Lactulose to ease her symptoms.
Early manifestations of hepatic encephalopathy include episodes of forgetfulness, daytime sleeping with nighttime insomnia, and subtle behavioral changes. Loss of fine motor skills. She should NOT drive unless her doctor said otherwise.
Some of the common symptoms seen during a severe episode are....
* Abnormal movements or shaking of hands or arms. A flapping tremor (Asterixis) in the hands is common.
* Agitation, excitement, or seizures (occur rarely)
* Disorientation (Not know where or who she is)
* Drowsiness or confusion
* Strange behavior or severe personality changes
* Slurred speech
* Slowed or sluggish movement
* People with hepatic encephalopathy can become unconscious, unresponsive, and possibly enter a coma. This can be life-threatening and requires emergency medical care!
The rifaximin takes time to work. Maybe a week or two. Studies have shown it to be helpful in stabilizing HE and preventing hospitalizations. So in the meantime she is dependent upon the Lactulose. Lactulose does work and if she is taken to the hospital she will be given Lactulose to manage her HE episode. The important thing is to take the Lactulose throughout the day so that taking it produces 2-4 bowel moments a day. Two few or two many bowel movements will not be effective. Meaning constipation or diarrhea can cause hepatic encephalopathy! So finding the right dosage is the key to successful treatment.
Also she should not eat any red meat as red meat releases toxins during digestion that can lead to HE.
Also sometimes things can occur that she or you can't control. For example infection or internal bleeding are things that may happening in people with End-Stage Liver Disease and can cause increased HE as well as being life-threatening in themselves. So when in doubt you should either call the hospital (have the liver transplant centers 24/7 telephone number). Her hepatologist will tell you how you can get help should an emergency happen. For those of us listed for liver transplant we have a 24/7 number to call were we can speak either to a nurse in the liver disease department (hepatology) or the on call doctor in the Liver Transplant clinic.
Of course for she must abstain from alcohol for the rest of her life to recover her health.
HE is caused by circulating blood neurotoxins (toxins that affect the brain) that are not cleared from the blood normally because the liver is too damaged to function properly and due to the scarring of the liver, the blood instead of going through the liver, the blood flows past and around the liver which causes the creation of enlarged collateral veins know as varices.
Hopefully they have told you all this already. Once you have an hepatologist (liver specialist) I am sure they will go over all of this. When you see the hepatologist I would suggest writing down any questions you have regarding your wife's illness and how you can best care for her.
Advance liver disease is a very complex disease and has many manifestations as you may already know. There is a big learning curve at first but over time you will learn what to look for so you can assess her condition and if need be request medical attention.
Being a caregiver in many ways can be harder than being the patient. So remember that you need time and space for yourself to avoid burnout as End-Stage disease and liver transplantation can take many months of care and attention. If you can get others to help with different things and take all of the weight off of yourself that would be ideal. This will be a very challenging time. Many ups and downs. An emotional roller coaster but it can have a end if the person can get a liver transplant and recover there health and life. I received my liver transplant last November after waiting almost 4 years with advanced liver disease in addition to liver cancer. I can tell you that the struggle was well worth it.
Here is the Xifaxan website which has good information on understanding HE and its treatment.
http://www.xifaxan550.com/about-hepatic-encephalopathy/
I am very glad your wife has you caring for her.
Be well.
Hector
Early manifestations of hepatic encephalopathy include episodes of forgetfulness, daytime sleeping with nighttime insomnia, and subtle behavioral changes. Loss of fine motor skills. She should NOT drive unless her doctor said otherwise.
Some of the common symptoms seen during a severe episode are....
* Abnormal movements or shaking of hands or arms. A flapping tremor (Asterixis) in the hands is common.
* Agitation, excitement, or seizures (occur rarely)
* Disorientation (Not know where or who she is)
* Drowsiness or confusion
* Strange behavior or severe personality changes
* Slurred speech
* Slowed or sluggish movement
* People with hepatic encephalopathy can become unconscious, unresponsive, and possibly enter a coma. This can be life-threatening and requires emergency medical care!
The rifaximin takes time to work. Maybe a week or two. Studies have shown it to be helpful in stabilizing HE and preventing hospitalizations. So in the meantime she is dependent upon the Lactulose. Lactulose does work and if she is taken to the hospital she will be given Lactulose to manage her HE episode. The important thing is to take the Lactulose throughout the day so that taking it produces 2-4 bowel moments a day. Two few or two many bowel movements will not be effective. Meaning constipation or diarrhea can cause hepatic encephalopathy! So finding the right dosage is the key to successful treatment.
Also she should not eat any red meat as red meat releases toxins during digestion that can lead to HE.
Also sometimes things can occur that she or you can't control. For example infection or internal bleeding are things that may happening in people with End-Stage Liver Disease and can cause increased HE as well as being life-threatening in themselves. So when in doubt you should either call the hospital (have the liver transplant centers 24/7 telephone number). Her hepatologist will tell you how you can get help should an emergency happen. For those of us listed for liver transplant we have a 24/7 number to call were we can speak either to a nurse in the liver disease department (hepatology) or the on call doctor in the Liver Transplant clinic.
Of course for she must abstain from alcohol for the rest of her life to recover her health.
HE is caused by circulating blood neurotoxins (toxins that affect the brain) that are not cleared from the blood normally because the liver is too damaged to function properly and due to the scarring of the liver, the blood instead of going through the liver, the blood flows past and around the liver which causes the creation of enlarged collateral veins know as varices.
Hopefully they have told you all this already. Once you have an hepatologist (liver specialist) I am sure they will go over all of this. When you see the hepatologist I would suggest writing down any questions you have regarding your wife's illness and how you can best care for her.
Advance liver disease is a very complex disease and has many manifestations as you may already know. There is a big learning curve at first but over time you will learn what to look for so you can assess her condition and if need be request medical attention.
Being a caregiver in many ways can be harder than being the patient. So remember that you need time and space for yourself to avoid burnout as End-Stage disease and liver transplantation can take many months of care and attention. If you can get others to help with different things and take all of the weight off of yourself that would be ideal. This will be a very challenging time. Many ups and downs. An emotional roller coaster but it can have a end if the person can get a liver transplant and recover there health and life. I received my liver transplant last November after waiting almost 4 years with advanced liver disease in addition to liver cancer. I can tell you that the struggle was well worth it.
Here is the Xifaxan website which has good information on understanding HE and its treatment.
http://www.xifaxan550.com/about-hepatic-encephalopathy/
I am very glad your wife has you caring for her.
Be well.
Hector
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