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Cirrhosis of the Liver Community
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Avatar universal

need some encouragement

Hi I am very glad to have found this forum.  Husband has just (6 weeks ago) been told his cirrhosis has decompensated.  A combination of alcohol and a genetic disease.   He is in good hands (prestigious teaching hospital in the UK) and the hepatologist said a couple of weeks ago that he was only mildly decompensated and there was a real chance of "some" recovery over the next 6 months as long as he stayed off the alcohol, which he will.  However what I am looking at seems to be the opposite to this.   He seems to me to be deteriorating daily.   He has ascites which so far has not responded much to diuretics  - increased 4 days ago to 200mg spironolactone and 80 mg furesomide - and has severe muscle wasting.  He had a few weeks of hardly eating anything, but is now eating a moderate amount and drinking 3 diet supplements a day.  He can't manage any more because of both the ascites and the fact that the diuretics are drying his mouth out.   I am going to call the hepatologist for advice tomorrow, but I am hoping that some people here can share their experience of this stage of the condition.
5 Responses
Avatar universal
Welcome to the forum.  There are many knowledgeable and experience people who are members and I'm sure will offer you advice based on their experience.

I, too, am a caregiver, so let me address that first. This is a difficult road ahead for both of you. Be sure to take care of yourself also. You too will need support.  I hope you have someone or a support group (in addition to this forum) you can turn to as the stress can get overwhelming at times. Do not be afraid to ask for help.

Has your husband been evaluated for transplant yet?  Here in the United States, if your cirrhosis is related to alcohol, you must have six months of confirmed sobriety before they will place you on a transplant list. From the symptoms you describe, your husband is approaching end stage liver disease.
Does he have other symptoms of decompensation (portal hypertension, esophageal or stomach varices, edema, or hepatic encephalopathy)?
If so, all of these are potentially life threatening and it is very important that
he be listed on a transplant list.  I am glad to read that he is being cared for by a hepatologist at a prestigious teaching hospital. Do they have a transplant program?  Getting evaluated for transplant should be your first priority.

My husband had a liver transpant 2 years ago, so I know well what you both are going through right now.  Learn as much as you can about the disease. Doctors are very busy people with lots of patients and a lot on their minds.  You, on the other hand, have only one patient on your mind.  The more you know about his medical history and condition the better prepared you will be to be his best advocate.

I wish you both the very best moving forward. You will be in my prayers and positive thoughts.

Nan









Avatar universal
Nan, thank you so much.   Portal hypertension, stage 1 varices but no sign of bleeding, edema but no HE.  I doubt very much if he would score highly for a transplant as he nearly 70 with (stable) coronary artery disease and this genetic disease which affects the lungs too.  In fact I've been aware for many months that he was not well but thought it was COPD not liver.   We have no children and husband's daughter lives on the other side of the world.  She arrived today for 2 weeks so I've got great support at the moment, but I think her shock at seeing how her father has deteriorated has affected me badly.  My only close relative alive is a brother who is an 8 hour drive away, but he has offered to at any time.  I do have the best neighbours you could wish for and some very close friends, but of course they're not around at midnight.  Meanwhile I am trying to hold down a job.

I've read a lot and will keep doing so - I'm a research scientist so can deal with quite complicated stuff even though my speciality isn't medical, but that doesn't help much when I look at my poor love of my life who seems to be fading away before my eyes.

Avatar universal
I understand well the feeling of helplessness you start to feel. But there are things you can do to help him.  Here are some dietary tips I have picked along the way.  It is important for your husband to:

1. Limit his salt intake
High sodium can lead to an increase in fluid buildup in the abdomen. Too much sodium can also cause fluid retention in other parts of your body, usually seen in the ankles. High sodium also causes increased blood
pressure.

2.  When the body doesn't receive the nutrients it needs, it takes the protein
from your muscles for energy. This causes weight loss and decreases in muscle mass and, therefore, strength. A balanced diet with adequate calories, proteins, fats, and carbohydrates can help the damaged liver
regenerate new liver cells.

The diet should be high in complex carbohydrates (55-60% of calories), low in
total fat (25 - 30% of calories) and moderate in protein (15- 20% of calories).

Five or six smaller meals should be eaten per day.

Choose a variety of fruits and vegetables daily.

Choose a variety of grains each day, especially whole grains.

Choose a diet that is low in saturated fat and cholesterol and moderate in total fat.

Choose beverages and foods to moderate your intake of sugars.

There is a lot of information on the internet today that will help you to help him.
I don't know what I would have done if this had happened 20 years ago.
It has been a God send to be able to do research and find information to help me better understand everything.  As a research scientist I am sure you will feel the same way.

Keep coming back. We care.

Nan
446474 tn?1446351282
COMMUNITY LEADER
I agree with all of Nan's recommendations.

For someone with ascites it is especially import to be on a low sodium diet. Less 2,000 mg of sodium per day or less if the doctor recommends it. In order to do this you have to read all of the labels as most food has lots of added sodium to make it taste "good". So he will need to stay away from processed foods that are full of sodium. The doctor should have some guidelines of what he can eat. It is best to have vegetables and fruits and limit or eliminate red meat as it is hard to digest and can cause hepatic encephalopathy.

It is important to understand that if someone is taking in too much sodium, the diuretics will not be effective. Sodium overrides the effects of diuretics and they will continue to have fluid retention and may require paracentesis to remove the excess fluid.

It is also important for the patient to stay hydrated. Diuretics increase water and salt excretion from the kidneys and can cause dehydration if there isn't adequate fluid intake.

Nutrition is very important. With advanced liver disease the damaged liver which normally processes the nutrients from our food has a hard time converting the food into the things it needs for energy and muscle mass. As Nan said it is important to have a proper diet with plenty of protein. When someone is malnourished they are more prone to infections and other conditions which can be very dangerous in a person with advanced liver disease. I would highly recommend getting a consultation with a dietitian who works with patients with advanced cirrhosis. Staying as healthy as possible helps to prevent the life-threatening complications of advanced cirrhosis.

Since you are a research scientist here is a link to the "American Association for the Study of Liver Diseases" and European Association for the Study of the Liver guidelines for doctors who treat patients with liver disease. It is written for doctors who care for patient but once you know some of the language it is all quite understandable and very detailed as to how particular cirrhosis related issues are managed.

If you have any particular questions regarding these guideline you can post them and we will try to assist you.

AASLD PRACTICE GUIDELINES
Alcoholic Liver Disease - 2010
http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/AlcoholicLiverDisease1-2010.pdf

AASLD PRACTICE GUIDELINE
Management of Adult Patients with Ascites
Due to Cirrhosis: Update 2012
http://www.aasld.org/practiceguidelines/Documents/ascitesupdate2013.pdf

Here are the EASL (European Association for the Study of the Liver) clinical guidelines which are about 95%+ the same as the AASLD guideline I am familiar with.

EASL Clinical Practical Guidelines:
Management of Alcoholic Liver Disease - 2012
http://www.easl.eu/assets/application/files/5e1b5512fb2cabb_file.pdf

EASL clinical practice guidelines on the management of
ascites, spontaneous bacterial peritonitis, and hepatorenal
syndrome in cirrhosis
http://www.easl.eu/assets/application/files/21e21971bf182e5_file.pdf

I think you will find these documents helpful in understand what your husband is experiencing and how his hepatologist is viewing his liver disease.

I had chronic hepatitis C infection which caused me to be diagnosed with cirrhosis in 2007. My cirrhosis decompensated in 2009 (ascites and peripheral edema, hepatic encephalopathy, varices, etc.and was listed for liver transplant. While waiting for transplant I developed HCC liver cancer in 2011 and had numerous cancer treatments until on November 16, 2013 I received my liver transplant and am now 7+ months post transplant and doing well. I have been involved with our liver transplant center's support services for the last 4 1/2 years and do volunteer work now with other transplant patients pre and post liver transplantation.

Hopefully your husband's liver disease will stabilize since it is no longer being damaged by the toxic effects of alcohol.
Be well.
Hector





Avatar universal
Thank you Nan and Hector.  I am feeling a lot better as we all spoke to the hepatologist today.  She listened very carefully to us and said that although she could admit him immediately she didn't think it was necessary, but he now has a clinic appointment on Friday instead of 3 weeks time.  I think stepdaughter was reassured that it was normal for someone in his condition to look as he does at the moment, and that it should slowly start to get better rather than worse.  Fingers crossed.

He has seen a dietitian a couple of times - the first time on his own and he came back quite enthusiastic for about a week, then practically stopped eating at all.  That was partly my fault for becoming a salt Nazi.  He reckoned giving up salt was far harder than stopping drinking!  The second time I went too but this was after 2 weeks of very little intake, and he looked so wasted that she told us he could eat anything he liked for a while as long as it was high in calories and protein.  Fortunately we never did eat much processed food and cutting out the obvious salty snacks is no problem.  We'll get back to lowering the salt content of what I cook, but slowly.  Of course I realise this isn't helping the ascites, but the hepatologist wants to continue trying to manage that medically for now.

Hector, thank you for all the references - I'll get through them as I can and come back with questions.  Meanwhile thanks again to both of you.
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