My husband was diagnosed in May. A check up in October revealed that he is stable, liver is functioning at 20% and that's all they tell you. It's frustrating. He is on antibiotics and lactulose 3 times daily. Where do you get answers on what to expect going forward. Transplant has never been discussed.
Is your husband seeing a hepatologist? If not, I strongly suggest you consult one associated with a transplant center asap. What city are you living in?
Your husband has advanced cirrhosis of the liver if his diagnosis is end stage liver disease. His treatment of antibiotics and lactulose indicates he is suffering from Hepatic Encephalopathy which may indicate he has or is close to decompensating. Does he have varices, edema, ascites, and/or portal hypertension? These are all very serious and potentially life threatening.
He should be evaluated for transplant and that requires a referral. If your doctor is not talking about that then it sounds to me he is not the right doctor for you.
I'm sorry to hear about your husband's diagnosis of End Stage Liver Disease (ESLD). Hopefully Randy or Hector will answer your post, as they both have more knowledge than I do.
It would be helpful if you could tell us a little bit more about your husband's case. What is the cause of his Cirrhosis? How long as he had Cirrhosis? What kind of infection does he have that he's taking antibioitics for (i.e. is it cellulitis due to edema)? Has he ever had an HE (Hepatic Encephalopathy) episode? Does he have any bleeding varices (bleeding from the esophagus or from the lower digestive tract)? Does your husband see a hepatologist? Do you know what your husband's MELD score is?
He is probably taking Lactulose to help prevent Hepatic Encephalopathy (HE), which is a build up of toxins causing the development of ammonia which leads to some cognitive problems (forgetfulness, disorientation, behavioral changes, etc.). It is important for him to take his Lactulose as prescribed. He has probably also already been told to avoid red meat, don't take vitamins that have iron supplements, avoid foods that are high in iron, reduce sodium, eat liver friendly foods including lots of fresh, organic veggies and fruits. In fact, he should see a dietician to make sure that he's on a liver friendly diet. Fluids, protein, sodium, iron, all have to be watched carefully so as to not have HE episodes and to prevent or control edema and ascites.
Since he has advanced decompensated Cirrhosis (i.e. liver is no longer functioning properly), he should be treated by a hepatologist. Usually hepatologists are found in university based medical centers with transplant centers. With ESLD, your husband's only option is a transplant. There is no "cure" for ESLD. Doctors can help manage some of the symptoms (like edema, ascites, HE, and varices), but some of these can become life threatening symptoms that require immediate attention. Only a hepatologist can manage and treat these symptoms properly.
With ESLD, your husband's liver will progressively get worse and he will have more and more symptoms and he will get sicker and sicker. As I said, some symptoms can be managed by a hepatologist, but when one's liver isn't functioning properly, and when the damage has progressed to the state that your husband's has, the only option is a transplant.
I don't know why your husband's doctor hasn't discussed a transplant, but you should ask. The approval process for getting listed for a transplant is long and difficult. There are many reasons why people may be excluded from being listed for a transplant: other serious medical conditions, alcoholism, drug abuse, obesity to name a few.
What to expect going forward: 1) if he isn't being seen by a hepatologist in a transplant center, make an appointment ASAP, 2) if he is being seen by a hepatologist in a transplant center, ask why he isn't being evaluated for approval to be listed for a transplant, and 3) if he isn't eligible for a transplant for one of the reasons listed above, work with the hepatologist and dietician to resolve the reasons for ineligibility and try to begin the process to get him listed, and 4) if none of these are possible, as the doctor what to expect going forward. Without a transplant, it is likely that your husband will eventually die from ESLD and it's complications, but we on the forum have no way to estimate the time frame. He could live for many months and develop horrible and painful symptoms with many life threatening emergencies, or he could decline quickly and only live a short time. If transplant isn't an option, I would ask the doctor why, and I would ask the doctor what to expect, because death from ESLD is very difficult.
Again, hopefully Randy or Hector will respond to your post with more information, but the answers to some of my questions will help them in their response as well.
You have found the right forum. People on this forum either have Cirrhosis or have loved ones with Cirrhosis, many of whom are ESLD.
I agree with the other posts. Your husband needs to be cared for by a hepatologist (a liver specialist) at a liver transplant center. They are the only specialists that can help someone with the stage of his liver disease.
"Where do you get answers on what to expect going forward".
From his hepatologist.
"Transplant has never been discussed."
Ask the hepatologist about a possible need for a liver transplant in the future. This should come up during a discussion of the first question when she/he discusses prognosis.
Thank you for your replies. He is an alcoholic (recovering) sober for 8 months. We don't see the liver specialist again until April. Not sure what the antibiotics are for, but there was hepatic encephalopathy diagnosed. He is tired a lot, gets cramps in his hands and feet. We have never spoke about diet, they told him to eat healthy. With being a recovering alcoholic his diet includes a lot of chocolate. When you refer to him getting sicker and sicker, what symptoms should I be looking for or what should I expect. He had pain in his lower abdomen last week, a Doctors short visit showed nothing wrong. Luckily the pain has diminished. He is confused sometimes, but for the most he is OK. Your feedback is so appreciated. Thank you also Hector and Nan
I must say I am quite surprised to hear that your next appt. with the "liver specialist" is not until April. Based on your description of your husband's condition (20% liver function with a diagnosis of hepatic encephalopathy), it does not seem to me that the urgency of his condition is being taken seriously.
Advocate1955 had outlined the suggested steps very well. We both have been long-term caregivers for our husbands who have cirrhosis just as your husband does.
I am copying and pasting what she wrote here again:
"What to expect going forward: 1) if he isn't being seen by a hepatologist in a transplant center, make an appointment ASAP, 2) if he is being seen by a hepatologist in a transplant center, ask why he isn't being evaluated for approval to be listed for a transplant, and 3) if he isn't eligible for a transplant for one of the reasons listed above, work with the hepatologist and dietician to resolve the reasons for ineligibility and try to begin the process to get him listed, and 4) if none of these are possible, ask the doctor what to expect going forward. "
Make no mistake your husband's condition is life-threatening. I'm sorry to be so blunt. The fact that he is sober for eight months bodes very well for him to be placed on a liver transplant list. We, unfortunately, have been walking down this path for years now and offer you this advice based on our experience and with our best intentions.
Wishing you and your husband a happy and healthier New Year.
Hector, Randy, and Nan may be better able to answer the question about what symptoms to expect as your husband gets sicker and sicker from ESLD without a transplant. Hector recently had a life saving transplant, but had been very, very sick with ESLD for a long time before his transplant. Nan's husband had a transplant and was very sick with ESLD prior as well. Randy has ESLD as well.
I don't have any first hand experience with ESLD, my experience is second hand through 3 friends with ESLD.
Your husband has ESLD, which means End Stage Liver Disease. This means that his liver is damaged beyond repair and damaged beyond the ability to regenerate itself or get better. The three biggest symptoms of ESLD, from my observation, are ascites (the fluid build up in the abdomen), bleeding varices (blood vessels that rupture and bleed usually in the esophagus but sometimes in the digestive tract - the intestines - internal bleeding), and Hepatic Encephalopathy (the build of up ammonia causing the cognitive symptoms). Additionally people with ESLD can develop infections, such as cellulitis (skin infections), due to overall edema. They can also develop mobility issues due to generalized fatigue, weakness, and pain. They may have sleep issues, such as insomnia or sleeping too deeply during the day. They may have abdominal pain, vomiting, nausea. They often lose a lot of weight due to the inability to gain nutrients from food, but they may also gain a lot of weight due to the inability to move fluids (edema). They may have many life threatening emergencies that require trips to the ER or hospitalizations, such as bleeding from the esophagus or bleeding internally, pain from ascites, or even HE episodes that are frightening. They may have difficulty stabilizing things like blood sodium and potassium, due to difficulties with intake and output.
Again, my information is second hand, not first hand.
Once the liver stops functioning properly as it does when one has ESLD, as time passes, these complications become more difficult to manage and anyone of these complications can evolve into a life threatening emergency. The liver can't repair itself or regenerate itself any longer, so as the months go on, the percentage of liver function declines, the body gets weaker due to inability to gain nutrients from food, fluids build within the body, mobility gets more difficult, weakness and fatigue increases, it gets harder to eat the proper foods or drink the proper amounts of water, the pain from the muscle cramps increases, and things become cyclical. One problem compounds another problem.
It's hard to know exactly where your husband is in the progression of his ESLD, but it sounds like he is somewhere in the middle of the progression. I'm not trying to sound pessimistic or scare you, but the reality is that things will not improve without a transplant.
A good hepatologist should be able to manage and control some or all of his current symptoms (ascites and HE) and hopefully prevent other symptoms (edema and varices), but it requires close and careful monitoring, frequent imaging, frequent lab work, and access to the hepatologist as symptoms arise. If your husband has been sober for 8 months, then past alcoholism should not prevent him from being able to be evaluated for possible liver transplant.
If it were me, I would make an appointment with the nearest hepatologist in the nearest transplant center, bring in his records (ultrasounds, CT scans, biopsy results, labwork, etc.), and try to get established with that hepatologist. Ask for a treatment plan, a plan for how often he should be seen by the hepatologist, what to do in an emergency, a review of his medications, a referral to a nutritionist who can help determine what he should and should not be eating, and ask what the steps are to be evaluated for a liver transplant.
Often times there are many, many steps, such as blood work, imaging, updated dental work, updated physical exams for other health issues, colonoscopy, endoscopy, etc. All of these things have to be updated because they will not transplant anyone who has a serious health issue. The dental work is often an obstacle for people trying to be approved for a transplant because of the risk of bleeding.
I think you need a step by step plan from a hepatologist in a transplant center, so that you can break it down and take care of one thing at a time, with two goals: 1) getting established with a transplant hepatologist, and 2) getting him listed for a transplant.
You and your husband need to know his MELD score, which is the score that hepatologists use to determine how sick someone is with liver disease. It is also the score that is used to determine when someone is sick enough to require a transplant.
The nutrition is really an essential component. The liver filters everything we put into our bodies and when the liver isn't working right then bad things that we put into our bodies cause toxins to build up, and good things that we put into our bodies are unable to benefit us. Your hubby needs a nutritionist in a transplant center to determine exactly what his diet should be, but generally speaking it would be no red meat, no iron supplements, no foods high in iron, fresh and organic fruits and veggies, a restricted amount of sodium, a specific amount of water, all based on his particular needs given the state of his liver and his lab results, but also based on his need to lower his BMI to the acceptable range for possible transplant.
You mentioned that his next appt with the liver specialist is in April. Is the liver specialist a gastroenterologist or a hepatologist? If he/she is a gastroenterologist, then he/she is not a liver specialist. A hepatologist is a liver specialist, and only a hepatologist is qualified to take care of a patient with ESLD.
Best wishes to you and your hubby mar1959. Again, I defer to Nan, Hector, and Randy, as they are all far more experienced and knowledgeable than I am about ESLD.
There are also some other people on this forum who have ESLD, that I'm sure would be happy to be in touch with you as well: mckansas, sevettes, happy_in_the_keyes, ejoli, to name a few. You can find them by searching the forum with their names or by looking at my friend list.
Sometimes it is good just to know that there are others out there who are going through the same thing as your hubby who might be able to provide support.
There is nothing more I would add to what Advocate1955 has written about ESLD. Very informative and right on target.
In December, 2010 my husband was diagnosed with cirrhosis of the liver as a result of Hepatitis C infection (the result of blood transfusions in 1979). He had portal hypertension, edema, esophageal and stomach varices, and hepatic encephalopathy. Lucky for him he had minimal ascites (fluid in the belly). He was evaluated and placed on a liver transplant list. While waiting for his transplant the doctors were able to control his symptoms (as Advocate stated) through close monitoring (labwork every two weeks, banding of the varices to prevent bleeding, diet restrictions and medicines to reduce the edema, and treating his HE with lactulose). In an attempt to clear the Hep C before transplant, he started a very tough new treatment which unfortunately caused him to decompensate (liver stopped functioning further) and he was diagnosed with ESLD (End Stage Liver Disease). This is what your husband has.
This is why I am not understanding why his next appt. is not until April. You stated that his last appt was in October. That means the doctor was not planning to see him until 6 months later - a patient with ESLD! I find that very hard to comprehend.
You came to this forum because you wanted answers. I think you have the information you need now to make an informed decision about what to do next to help your husband.
The doctor is a gastroenterologist. I think I know what needs to be done now. I will speak with our GP and get referred to a hepatologist. Thanks again everyone for your input.
Happy and healthy New Year to all.
That is exactly what needs to be done, ASAP.
Again, not being a doctor, and not knowing your husband's exact stage of ESLD, there's no way to give you any kind of time table. But the reality is that he could decompensate further, bleed out, his liver could fail, or he could slip into a coma or die at any time. Without care and treatment by a hepatologist or possibility of a transplant, I would venture a guess of six months or less.
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