Living with hepatic encephalopathy
January 28, 2022 5:22 AM Subscribe
If you or someone you know has been diagnosed with hepatic encephalopathy, how is it dealt with on a day to day basis? Is there anything in particular done to help? Are there particular things you avoid? A certain diet?
Best answer: IANYD but care for a number of patients with liver disease. Medication regimen adherence is SO important in HE patients. Setting up a system that is as foolproof as possible to make sure that meds are given on time is the best thing one can do. Lactulose and any prophylactic antibiotics in particular.
posted by honeybee413 at 7:31 AM on January 28, 2022 [2 favorites]
posted by honeybee413 at 7:31 AM on January 28, 2022 [2 favorites]
Response by poster: I am politely requesting that answers limit themselves to concrete information based on actual knowledge of or dealing with hepatic encephalopathy, thank you.
posted by Brandon Blatcher at 7:44 AM on January 28, 2022
posted by Brandon Blatcher at 7:44 AM on January 28, 2022
Best answer: IANAD, but I helped care for a loved one with this and I understand the difficulty.
Lactulose is nasty stuff, but it's very important to stick with the dose that the doctor has prescribed and take it regularly. We had some success cutting it with different flavored drinks to make is a little more palatable, but be sure to check with medical professionals.
Also, make sure those around the person with HE are getting the help that they need as well.
posted by RonButNotStupid at 8:56 AM on January 28, 2022 [1 favorite]
Lactulose is nasty stuff, but it's very important to stick with the dose that the doctor has prescribed and take it regularly. We had some success cutting it with different flavored drinks to make is a little more palatable, but be sure to check with medical professionals.
Also, make sure those around the person with HE are getting the help that they need as well.
posted by RonButNotStupid at 8:56 AM on January 28, 2022 [1 favorite]
Best answer: A family member had hepatic encephalopathy, and I wouldn't say we exactly "dealt" with it - as I recall he was prescribed lactulose but I don't recall it helped much. It was very frightening for me (spouse) and the patient seemed unaware of the personality changes he was undergoing. In his case the cause of the liver disease was such that he needed a transplant - which he got, and is now doing fairly well. The encephalopathy cleared up post-transplant.
I hope you get more reassuring answers, but thought I would offer my experience for what it's worth.
posted by altolinguistic at 9:06 AM on January 28, 2022 [1 favorite]
I hope you get more reassuring answers, but thought I would offer my experience for what it's worth.
posted by altolinguistic at 9:06 AM on January 28, 2022 [1 favorite]
Nurse who has cared for people with this diagnosis here: the person may need a lot of encouragement to take the lactulose but it's essential. Big picture, if there is any behavior that contributed to the development of liver disease, address this. If alcohol is a contributing factor, I strongly recommend the person try medication assisted treatment. I've seen good results from injectable, long acting naltrexone (vivitrol).
posted by latkes at 2:44 PM on January 28, 2022 [1 favorite]
posted by latkes at 2:44 PM on January 28, 2022 [1 favorite]
(Doctors may be wary of prescribing naltrexone with acute liver disease so consider a specialist in alcohol use disorder if this is an issue)
posted by latkes at 2:47 PM on January 28, 2022
posted by latkes at 2:47 PM on January 28, 2022
Can you be a little more specific about what information you are looking for? HE is usually only one aspect of serious liver disease. I have helped care for many, many patients with HE in my role as a nurse in a hepatology practice. I also helped care for transplant patients pre and post transplant.
I think it might be helpful to think of the hepatic encephalopathy symptoms your loved one may be experiencing (sorry if I'm wrong in this assumption) as symptoms of the liver's inability to perform its task of "cleaning" the blood of substances it would normally process, so they build up and cause mental confusion. The liver's filtering capacity is not keeping up. That's why people are mentioning lactulose, which is very sweet and induces bowel movements. The idea is to try to prompt the body to remove some of these substances via the gut, in the form of more frequent bowel movements. This does not "cure" the damaged liver, but rather removes substances (typically ammonia and bilirubin) by the GI tract instead. Reducing lactulose because too-frequent or too-loose bowel movements are inconvenient or problematic can worsen encephalopathy. I had patients who would not take the lactulose on days they had appointments for fear of not being able to get to a bathroom, and then developed worsening HE symptoms. It can be very difficult to be adherent to treatment for this reason. There are also some oral antibiotics that can be used in combination with or instead of lactulose for some patients. It's also important to understand that HE can be worsened by other problems, typically infection, so don't assume a bout of worsening confusion is because a person is not taking their doses of lactulose or other medication. Sudden unexplained worsening of HE symptoms are potentially an emergency.
You spoke of diet, and the most often implemented dietary change is to lower protein, especially animal protein, which causes the greatest problem for those with HE - it increases the level of ammonia in the blood, which the cirrhotic liver cannot remove well. Strict avoidance of protein has fallen out of favor, but can be recommended if encephalopathy is resistant to treatment. The patient and family should definitely be counseled on the role of diet, and the recommendations are normally quite specific.
The hepatologist should be actively involved in designing comprehensive treatment. I would recommend that if a person has HE a hepatologist is the more appropriate clinician, rather than a GI physician, though some GI docs work in collaboration with hepatologists. It's also helpful to know that each person with HE has a particular treatment combo that works for them, and it depends on your loved one's response to different treatment options. It's also common that as disease progresses treatment needs tweaking. It can be frustrating.
Hepatic encephalopathy is only one part of what happens when someone has severe liver disease, and can be affected by other aspects of the liver's impaired function. It's very debilitating, though. I'm sorry: A huge burden is placed on loved ones of the patient. If I can answer any questions feel free to memail me.
posted by citygirl at 3:36 PM on January 28, 2022 [4 favorites]
I think it might be helpful to think of the hepatic encephalopathy symptoms your loved one may be experiencing (sorry if I'm wrong in this assumption) as symptoms of the liver's inability to perform its task of "cleaning" the blood of substances it would normally process, so they build up and cause mental confusion. The liver's filtering capacity is not keeping up. That's why people are mentioning lactulose, which is very sweet and induces bowel movements. The idea is to try to prompt the body to remove some of these substances via the gut, in the form of more frequent bowel movements. This does not "cure" the damaged liver, but rather removes substances (typically ammonia and bilirubin) by the GI tract instead. Reducing lactulose because too-frequent or too-loose bowel movements are inconvenient or problematic can worsen encephalopathy. I had patients who would not take the lactulose on days they had appointments for fear of not being able to get to a bathroom, and then developed worsening HE symptoms. It can be very difficult to be adherent to treatment for this reason. There are also some oral antibiotics that can be used in combination with or instead of lactulose for some patients. It's also important to understand that HE can be worsened by other problems, typically infection, so don't assume a bout of worsening confusion is because a person is not taking their doses of lactulose or other medication. Sudden unexplained worsening of HE symptoms are potentially an emergency.
You spoke of diet, and the most often implemented dietary change is to lower protein, especially animal protein, which causes the greatest problem for those with HE - it increases the level of ammonia in the blood, which the cirrhotic liver cannot remove well. Strict avoidance of protein has fallen out of favor, but can be recommended if encephalopathy is resistant to treatment. The patient and family should definitely be counseled on the role of diet, and the recommendations are normally quite specific.
The hepatologist should be actively involved in designing comprehensive treatment. I would recommend that if a person has HE a hepatologist is the more appropriate clinician, rather than a GI physician, though some GI docs work in collaboration with hepatologists. It's also helpful to know that each person with HE has a particular treatment combo that works for them, and it depends on your loved one's response to different treatment options. It's also common that as disease progresses treatment needs tweaking. It can be frustrating.
Hepatic encephalopathy is only one part of what happens when someone has severe liver disease, and can be affected by other aspects of the liver's impaired function. It's very debilitating, though. I'm sorry: A huge burden is placed on loved ones of the patient. If I can answer any questions feel free to memail me.
posted by citygirl at 3:36 PM on January 28, 2022 [4 favorites]
Response by poster: Can you be a little more specific about what information you are looking for?
Hmmm, I thought I was clear, but it's totally possible I don't know what I don't know. My wife was diagnosed with HE, has liver cirrhosis from decades of drugs used to treat bipolar patients. She's been taking lactulose and we've discussed diet changes. Is there more I should know or be doing, in terms of helping to manage this? I had thought it would be come down to some diet changes, but perhaps its more complex.
posted by Brandon Blatcher at 6:02 PM on January 28, 2022
Hmmm, I thought I was clear, but it's totally possible I don't know what I don't know. My wife was diagnosed with HE, has liver cirrhosis from decades of drugs used to treat bipolar patients. She's been taking lactulose and we've discussed diet changes. Is there more I should know or be doing, in terms of helping to manage this? I had thought it would be come down to some diet changes, but perhaps its more complex.
posted by Brandon Blatcher at 6:02 PM on January 28, 2022
If you haven't already, I think you should memail citygirl and get in touch with your wife's clinician because it is an extremely large burden and you should know exactly what to expect.
My father developed HE in the late stage of his liver disease. Without going into too many distressing details, I didn't really notice it or think much of it until he landed in the hospital for unrelated reasons (he tripped on the stairs) and the overall strain on his body severely exacerbated the condition. I wasn't prepared at all to see him like that, and I was devastated. We were lucky that first time because a month of diligent lactulose doses did eventually bring him back, but it was probably one of the most stressful periods of my life.
posted by RonButNotStupid at 8:05 PM on January 28, 2022
My father developed HE in the late stage of his liver disease. Without going into too many distressing details, I didn't really notice it or think much of it until he landed in the hospital for unrelated reasons (he tripped on the stairs) and the overall strain on his body severely exacerbated the condition. I wasn't prepared at all to see him like that, and I was devastated. We were lucky that first time because a month of diligent lactulose doses did eventually bring him back, but it was probably one of the most stressful periods of my life.
posted by RonButNotStupid at 8:05 PM on January 28, 2022
You spoke of diet, and the most often implemented dietary change is to lower protein, especially animal protein, which causes the greatest problem for those with HE - it increases the level of ammonia in the blood, which the cirrhotic liver cannot remove well. Strict avoidance of protein has fallen out of favor, but can be recommended if encephalopathy is resistant to treatment.
GI doc here, we take care of a lot of folks with HE both in the hospital and in our outpatient clinic.
Low protein diet is no longer recommended except individually in selected patients. Limiting protein increases the loss of muscle mass and in the long term makes the HE worse because muscles play an important role in metabolizing ammonia which the cirrhotic liver cannot do as well. Yes to plant protein being better tolerated.
Also, evening snacks! And lots of small meals.
I'm on my phone so can't write a full explanation right now but I can try to come back to comment later or you can DM me if I forget.
*Obviously you should discuss all of this with your doctor, this is just to give you an idea on what to talk to your doctor about as neither of us commmenters knows your family member's specific health needs.
posted by M. at 11:41 PM on January 28, 2022 [4 favorites]
Hi Brandon Blatcher,
I want to emphasize that HE is only one aspect of end stage liver disease. It doesn't exist in a separate sphere apart from other changes taking place in the liver, and you and your wife should talk with her liver doctor or GI doctor with extensive ESLD to understand the condition. It's not like an uncomplicated hypothyroid condition where you take a pill every day and that basically solves the problem.
So, this is not a case where your wife takes lactulose and functions well for many decades without other sequelae. A thorough understanding of her liver disease is needed. What caused it? Can it be reversed? It used to be thought that cirrhosis was permanent, but medical understanding changed significantly over the past couple of decades, and every effort should be made to try to reverse it. Having cirrhosis makes one more susceptible to developing liver cancer no matter the cause, and she should be screened regularly. Cirrhosis puts her at risk of developing esophageal varices, which increases the internal pressure on small veins on the internal surfaces of the esophagus and stomach. These can bleed catastrophically. Cirrhosis reroutes the "plumbing" of the blood supply because the cirrhotic tissue impedes blood flow within the liver and the blood is rerouted, often to these little esophageal veins. She should be screened for this, and there are procedures to greatly lessen the possibility of this bleeding.
M. is correct when she says that protein restriction is used now only in selected patients, presumably those who do not have good HE control with lactulose or antibiotic therapy alone. Loss of muscle is a real problem, and protein restriction affects nutrition. However, this makes adherence to lactulose and/or antibiotic therapy even more important. It's all a balancing act to reduce HE symptoms without making other ESLD problems worse. This requires working diligently with the doctor and his or her team, and frequent communication about changes. Remember that infection can suddenly worsen HE, and is an emergency.
Is the doctor talking about the possibility of liver transplantation? If no, why not? I don't know where you are or what type of medical care she is receiving, but transplant evaluation can only be performed at a qualified organ transplant center, usually academic medical centers. Community doctors refer patients to them if they believe they might be candidates. The goal is to prevent transplantation, but sometimes it's the only option and it will usually only happen if you are in the transplant center's "pipeline" of elegible patients.
I wish you good luck assisting your wife to have the best outcome possible. Dealing with ESLD and HE can be overwhelming. Your wife's doctor or nurse may suggest a support group you can reach out to for support. Families of others with ESLD can offer lots of suggestions and insight on how to move forward and not lose yourself in the throes. Again, if I can offer any suggestions do not hesitate to contact me.
posted by citygirl at 8:26 AM on January 29, 2022 [1 favorite]
I want to emphasize that HE is only one aspect of end stage liver disease. It doesn't exist in a separate sphere apart from other changes taking place in the liver, and you and your wife should talk with her liver doctor or GI doctor with extensive ESLD to understand the condition. It's not like an uncomplicated hypothyroid condition where you take a pill every day and that basically solves the problem.
So, this is not a case where your wife takes lactulose and functions well for many decades without other sequelae. A thorough understanding of her liver disease is needed. What caused it? Can it be reversed? It used to be thought that cirrhosis was permanent, but medical understanding changed significantly over the past couple of decades, and every effort should be made to try to reverse it. Having cirrhosis makes one more susceptible to developing liver cancer no matter the cause, and she should be screened regularly. Cirrhosis puts her at risk of developing esophageal varices, which increases the internal pressure on small veins on the internal surfaces of the esophagus and stomach. These can bleed catastrophically. Cirrhosis reroutes the "plumbing" of the blood supply because the cirrhotic tissue impedes blood flow within the liver and the blood is rerouted, often to these little esophageal veins. She should be screened for this, and there are procedures to greatly lessen the possibility of this bleeding.
M. is correct when she says that protein restriction is used now only in selected patients, presumably those who do not have good HE control with lactulose or antibiotic therapy alone. Loss of muscle is a real problem, and protein restriction affects nutrition. However, this makes adherence to lactulose and/or antibiotic therapy even more important. It's all a balancing act to reduce HE symptoms without making other ESLD problems worse. This requires working diligently with the doctor and his or her team, and frequent communication about changes. Remember that infection can suddenly worsen HE, and is an emergency.
Is the doctor talking about the possibility of liver transplantation? If no, why not? I don't know where you are or what type of medical care she is receiving, but transplant evaluation can only be performed at a qualified organ transplant center, usually academic medical centers. Community doctors refer patients to them if they believe they might be candidates. The goal is to prevent transplantation, but sometimes it's the only option and it will usually only happen if you are in the transplant center's "pipeline" of elegible patients.
I wish you good luck assisting your wife to have the best outcome possible. Dealing with ESLD and HE can be overwhelming. Your wife's doctor or nurse may suggest a support group you can reach out to for support. Families of others with ESLD can offer lots of suggestions and insight on how to move forward and not lose yourself in the throes. Again, if I can offer any suggestions do not hesitate to contact me.
posted by citygirl at 8:26 AM on January 29, 2022 [1 favorite]
I am not your doctor, and my view is a little skewed by working primarily with transplant candidates.
I often see people whose PCP frequently checks their ammonia level and changes therapy with it. Hopefully you see a hepatologist about this and let them manage it. It is frustrating, but finding someone with a good phone or electronic setup for handling "my confusion is a little worse today" or "I have put on a little more water weight" in a timely way is very helpful and doesn't mean getting stuck for labs constantly. Those kind of check-ins can prevent someone from really decompensating. A hepatologist will also understand when a transplant evaluation makes sense.
It is easy to get "off routine" and it is very helpful to use external reminders for e.g. how much lactulose or diuretic is being taken. With HE, the liver is no longer able to keep up with clearing toxins, and so small infections, memory lapses, random diet changes can push you over the edge into worse HE. Then it gets even easier to lose track. It can be hard to be self-aware of modest changes in HE (like processing speed). A corollary is that a consistent diet is just as important as what you're eating on average. That doesn't mean the same things every day, but that the overall liver-processing-burden stays about the same.
Changing the things that insult the liver is extremely important. I often see people whose problem primarily comes from NASH, HCV, or auto-immune disease, but absolute sobriety really does help. The liver will never get back to normal, but people often get better from their low-point that leads to diagnosis. Sadly, it seems that is more common with alcohol as the primary disease.
Getting psychiatry and hepatology to work together can be hard (here at least). "Stable for a long time on dose X" is good, but if your processing of the drug changes with changes in liver function, clinicians need to accept being a little more active than they would otherwise.
posted by a robot made out of meat at 9:41 AM on January 29, 2022
I often see people whose PCP frequently checks their ammonia level and changes therapy with it. Hopefully you see a hepatologist about this and let them manage it. It is frustrating, but finding someone with a good phone or electronic setup for handling "my confusion is a little worse today" or "I have put on a little more water weight" in a timely way is very helpful and doesn't mean getting stuck for labs constantly. Those kind of check-ins can prevent someone from really decompensating. A hepatologist will also understand when a transplant evaluation makes sense.
It is easy to get "off routine" and it is very helpful to use external reminders for e.g. how much lactulose or diuretic is being taken. With HE, the liver is no longer able to keep up with clearing toxins, and so small infections, memory lapses, random diet changes can push you over the edge into worse HE. Then it gets even easier to lose track. It can be hard to be self-aware of modest changes in HE (like processing speed). A corollary is that a consistent diet is just as important as what you're eating on average. That doesn't mean the same things every day, but that the overall liver-processing-burden stays about the same.
Changing the things that insult the liver is extremely important. I often see people whose problem primarily comes from NASH, HCV, or auto-immune disease, but absolute sobriety really does help. The liver will never get back to normal, but people often get better from their low-point that leads to diagnosis. Sadly, it seems that is more common with alcohol as the primary disease.
Getting psychiatry and hepatology to work together can be hard (here at least). "Stable for a long time on dose X" is good, but if your processing of the drug changes with changes in liver function, clinicians need to accept being a little more active than they would otherwise.
posted by a robot made out of meat at 9:41 AM on January 29, 2022
This thread is closed to new comments.
(There are so many stories of people who got real help from lifestyle when doctors said it wouldn't make a difference that my inclination is to try lifestyle changes if there's a reason to believe they might help. On my cancer support board, people use the phrase "can't hurt, might help.")
posted by FencingGal at 7:21 AM on January 28, 2022 [1 favorite]