Progress of Chirrosis

[Val68]

I'm writing this post because I'm extremely worried about my husband's condition. He was diagnosed with cirrhosis about a year ago. He was throwing up blood and had bloody stools for a month or so before this episode. He stayed in the hospital for a few days, got some plasma and the bleeding was fixed. Doctors told him o stop drinking immediately. He has been an alcoholic for about 25-30 years. He is 59. He does not care about his condition and keeps drinking up to this day. Every day I can see his decline mentally and physically. He had 1-2 episodes when he did not recognize me and had no idea where he was. His legs are swollen in spite of water pills. he sleeps all the time, is tired every day, his muscles are hurting, he is irritable and angry all the time. his stomach is huge and his skin is yellow. He does not want me to go to the doctor with him and does not share what they tell him. I don't know any of his lab results. What is the progression I should expect at this point? Do I need to be ready for the worst any time soon? Please any advice and input will be greatly appreciated!

[Val68]

I'm so sorry for your loss. It must have been heartbreaking to see him dying slowly from this disease. You feel so helpless and angry at the same time because you know it could have been prevented if he just had the strength to face his addiction and reach out for people who cared about him. All of your messages really hit home today and reading them almost made me tear up.
Thanks for your support and I keep all of  you updated if any major change happens.

[rpooo]

Val, I am also very sorry to hear he is drinking again. I too abused alcohol for many years until I was diagnosed with cirrhosis four years ago. That day we left the doctor’s office I felt angry with what I had done to myself also I watched as my wife cried and wondering “what is she crying for, I’m the one with cirrhosis”. That selfish thinking lasted only a couple of minutes and I realized this beautiful lady, my wife was crying because she thought she might lose her husband. She was 31yrs old thinking she was going to be a widow. At that point I realized I was not only acting selfish then but had been selfish all those years every time I refused to go anywhere because they weren’t going to be serving/selling alcohol. My alcohol had been top priority, no matter how broke we were it was bought first.

This is when I realized it was time to do things for her and my loved ones that had stood by me going through this downward spiral that alcohol abuse takes us on. I had to do this for them, I owed it to them. Today I am thankful for every moment and every day. Sobriety was easy for me after that. This is my story and what it took for me. I still live with cirrhosis and complications of “” but I would never go back even if I could! I finally saw the good in such a bad situation for that I am very grateful.

Unfortunately not everyone sees it or maybe they just can’t find the strength. Either way this is going to be a hard road for you both, and like Ceanothus so well put “I am sorry for him, but more sorry for you as this is not of your doing and yet you will probably suffer more than he will, as you will have to live with the memories of it long after he is gone.” You are a good lady and wife to reach out for help, learning all that you can so you can help him. Always remember this is not your fault, nothing you should have done differently. His fate is in his own hands.

We are all here for you anytime you need, take care.

Randy

[ceanothus]

Oh boy, I am so sorry he went back to drinking. He is dead wrong when he thinks it won't make a difference. He is probably right now at the tipping point where he could save himself by permanently stopping drinking now, but very soon it will be too late for anything he does to make such a big difference. Stopping is not likely to make him instantly feel better, his liver has accumulated too much damage for that to happen quickly, but it would allow the slow process of healing to begin. It will never begin while he is still drinking, and at some point it will be so damaged that it can't heal anymore and all he could do then is accelerate or decelerate the rate of dying.. He is being a fool, throwing his life away and setting you up for massive amounts of pain watching him die a particularly unpleasant death. I am sorry for him, but more sorry for you as this is not of your doing and yet you will probably suffer more than he will, as you will have to live with the memories of it long after he is gone. I'm so sorry!

As for his doctor visits, if he is ever in a reasonable enough state of mind to have a serious conversation about the doctor visits you might try to explain to him that even for patients who are far less sick than he is, it is extremely useful to have a spouse or friend along for doctor visits. The stress of doctor visits, the confusion of being rushed or interrupted by doctors or assistants, and the mental confusion that can come with cirrhosis all combine to make it very difficult to remember one's questions for the doc or to remember exactly what the doctor said. My cirrhosis never got as bad as your husband's is (and I'm now on the road to recovery since I've eliminated the Hepatitis C that caused mine and eliminated all other toxins like alcohol as well), but I have found it really essential to take my husband with me for all the major appointments. It is amazing how often my memory is corrected by his, and I'm so grateful for his help. I wish you the best and hope some miracle will change your husband's mind – soon.

[BonBon52]

So sad but only he can make the decision. My son was the same way. He was told he needed a new liver last year. He was 34 yrs old and really thought he could beat this and a few Mikes beer a day was "nothing"..., he passed away yesterday. It happened real fast. I do hope he gets treatment
For this awful disease

[Val68]

Thanks all of you for your excellent advice and suggestions! My husband is at home. Sadly, his sobriety lasted only three weeks this time. During Thanksgiving he went and started his drinking again. He said he does not think a "couple "of drinks a day would hurt him worse than he is feeling now. His legs are still swollen, stomach is getting bigger. His urine is not dark yet though. I don't know what to do at this point, if he does not want to get help. Just pray that it will be easy on me!

[BonBon52]

How is your husband? Is he home or in hospital?

[Dee1956]

Hey there! Your English is very good, you have given Val some very important advice, everyone has

Good luck Val
Please keep in touch

I think Alanon helped my Mom very well when my Dad was drinking

[NT77]

Another thing came back from memory, and I may lack English words to make it sound nicer, so I apologize in advance.

If you've decided to take care about him, it is imperative that you now make ALL the decisions regarding his life, not him. Don't treat him like he's an innocent sick child, fulfilling all his wishes. If he decides to keep drinking, it's you that's gonna bear most of the pain, not him. He'll eventually just fall into hepatic coma never to wake up. Pain is felt only by those watching...

I made that mistake few years ago with my father. It soon evolved into "I dont want this, I dont want that"... We couldn't even roll him over on the bed to wash his back because his legs hurt so much... But when the nurse came few days later with a strict and professional attitude, she easily rolled him over all by herself, and he complained zero...

And don't worry about making a wrong decision, because any single decision he makes will surely be worse. Your first decision should be to throw all the alcohol out of the house, make it physically inaccessible.

Yeah, blood picture doesn't look bad. Color of the urine (when diuretics are not in effect) is perhaps even more important. Once it starts to get lighter, you're on a good track.

Good luck, and just so you know: your determination is inspiring.

[Dee1956]

I am so sorry for what you are going through.  While protein is important red meat is very hard on the liver and body.
Everyone above has given you excellent advice
I just wanted you to know that there are many people here willing to help.  You are not alone.
It is difficult for you because you don't really know what the doctor is saying.

I think that the fluid and the pain is being caused by the livers inability to release the fluids.

I had awful pain in my ankles at one point.  I had  a rash from feet to knees, bleeding under the skin, swelling of the ankles and legs and it felt as if my ankles were broken. I had a extra heptaic manifestation called cyroglobulinemia.
Everything that we eat, drink, put on our body, even in our eyes has to be processed through the liver.
When the liver is not working right then it really taxes the liver to process even more.
If you could get your husband to drink water to help flush his system that might help.  I am not a doctor but I remember a friend of mine had cirrhosis the swollen leg and stomach and her doctor told her she was dehydrated.  It was very counter intuitive
Hang in there, try to go to the Hepatologist with him..
Tell him you don't want him to leave you before his time.

I would try to get his ammonia checked.  If he is suffering from Hepatic Encephalitis then  he is not thinking right and really needs the support of his doctor, friends and family.

Take care, keep in touch
Dee

[rpooo]

Your husband does have some very serious complications that needs to be addressed by his hepatologist so I am glad you have him set up with an appointment. If he begins to use alcohol again his cirrhosis will continue to advance rapidly. At this point it is up to him which way it goes, with a MELD of 10 he can surely stop any further advancement and make a good recovery, comfortably living the rest of his life sober. I hope the best for you both.

Randy

[Val68]

Thanks for all this information. It made me feel much better reading that the lab results are not as bad as I thought.  My husband acts he is in a real bad shape though. It is just hard to see how in the last couple of years he went downhill so fast. Seeing him not be able to walk because of pain and swollen legs, being confused and extremely irritable, and not being able to do simple task due to being tired and exhausted makes me feel really sad for him and is hard on all of us. I'm praying he stays sober so his condition won't get much worse.

[rpooo]

Good morning Val,

The best I can tell you from looking at his labs:
Kidney function is normal
Liver is still irritated (likely from drinking)
Over-all liver function is pretty good considering cirrhosis
MELD= 10

The Model of Enstage Liver Disease or MELD score.
The Model for End-Stage Liver Disease (MELD) score has been in use since February 2002. It is used to measure a patient's risk of dying from chronic liver failure over a 90 day period from the day it was measured. It is used to determine the order and urgency of patients waiting for a liver transplant. The "MELD score" is a number scale. The range is from 6 (less ill) to 40 (gravely ill). The number is calculated using the following laboratory tests:
• Total Bilirubin: a measure of how well the liver clears certain body wastes.
• INR (International Normalized Ratio or previously known as the prothrombin time): a measures the liver’s ability to make blood clotting factors.
• Creatinine: a measure of kidney function. Severe liver failure often results in kidney failure.

In interpreting the MELD Score in hospitalized patients, the 3 month mortality is:
• 40 or more — 71.3% mortality
• 30–39 — 52.6% mortality
• 20–29 — 19.6% mortality
• 10–19 — 6.0% mortality
• <9 — 1.9% mortality

-----------------------------------------------------------------

Everything we ingest kills liver cells but this is okay because the liver has an amazing ability to heal itself but when we abuse alcohol over several years massive amount of cells are being destroyed and the liver cannot keep up so scar tissue begins to form. This is called fibrosis and in more severe cases such as your husbands, cirrhosis. The idea is to remove the cause to stop further progression this is why maintaining his sobriety for the rest of his life is so important. A carefully planned diet is also important, low sodium, low fat and avoiding red meats are important. There are many other sources of protein besides red meat. This type of is very much necessary for the health of his liver and to treat symptoms of cirrhosis. Tuna, chicken and salmon are excellent. Lots of green leafy vegetables and fruits. Foods that are high in antioxidants will also assist his liver in removing toxins, berries are an excellent source. All medications should be approved by your liver specialist, especially pain medication such as Tylenol or aspirin. You should also seek the approval of your liver specialist for any medical treatment that does not involve your Hepatologist.

-----------------------------------------------------------------

Hepatic encephalopathy is a condition affecting your brain due to liver disease. One of the functions of the liver is to clean blood coming from the gastrointestinal system. The gastrointestinal system includes your stomach and the intestines. Blood from the gastrointestinal system often contains ammonia and toxins made by intestinal bacteria (germs). Normally, the blood is cleaned in the liver by turning these harmful substances into less harmful products. The clean blood then goes to the lungs to get oxygen before going to the heart. The heart then pumps the blood to all parts of the body, including the brain.
With this condition, there may be a problem in the blood flow into the liver. This happens when blood does not easily go into the liver because of liver disease. When blood cannot flow into the liver, it uses other blood vessels to return to the heart. This then leaves the blood uncleaned of harmful substances, including ammonia. The function of the liver to convert ammonia in blood may also be decreased in liver disease. Ammonia and other harmful substances may go into the brain and damage brain cells. This may affect many of the brain's important functions that could cause even more problems to your body. Early treatment is needed to reverse the damaging effects of this condition and restore proper brain function

Medication to treat hepatic encephalopathy (HE) are Lactulose (as Dee mentioned), Xifaxin and Rifaximin. A prescription is required to obtain any of these drugs.
-----------------------------------------------------------------

Ascites is excess fluid in your lower abdomen. Symptoms of ascites include:
• Rapid weight gain and swelling
• Swollen abdomen
• Shortness of breath
• Stretch marks and bulging veins on the abdomen
• Nausea
• A feeling of fullness after eating little food

Ascites treatment usually combines medicines with changes to your eating and drinking habits. Other treatments are used if your ascites does not improve or if the condition that caused the ascites is getting worse.

Diuretics and antibiotic medications.
Sodium and liquid restrictions.
• Procedures and surgeries:
o Paracentesis: Your caregiver drains the fluid out of your abdomen through a needle. You will receive numbing medicine before the procedure. Paracentesis can quickly remove quarts of fluid. Paracentesis may be repeated if the ascites does not respond to other treatments.


Dehydration is a common side effect of taking diuretics. His dosage may need to be reduced. Signs include dizziness, extreme thirst, excessive dryness of the mouth, decreased urine output, dark-colored urine, or constipation. If these symptoms occur, don't assume you need more fluids, call your doctor. Your husband’s kidney function looks good.
-----------------------------------------------------------------

Thousands of lives depend on receiving organs and tissues for transplant, but there is a severe and chronic shortage of donor organs. Every year, more than 1,500 people die waiting for a donated liver to become available.
How many people are waiting for liver transplants?
Currently, about 17,000 adults and children have been medically approved for liver transplants and are waiting for donated livers to become available. The waiting list grows every year.
From reading your posts I think that as long as he maintains his sobriety he can avoid a liver transplant. Candidates for liver transplant must have documented six months of sobriety before being added to the list. Four years ago I was diagnosed with alcoholic cirrhosis, though living with liver disease isn’t always easy life has never been better. I spent more than twenty years abusing alcohol. I’ll take my sobriety and cirrhosis any day over going back to living every day in that drunken haze that really isn’t living at all. In a strange kind of way my diagnosis was a blessing.

I wish you and your husband the best,

Randy

[Val68]

Thanks for your detailed suggestions. I'm so glad I found this forum and realized that  I'm not alone in this situation and that people are so helpful and willing to give advice!

[Val68]

Here are my husband's lab reports. Please help me interpret this data as far as the MELD or Child-Pugh Score or how serious these numbers are. Thank you for any suggestions!
Renal Function  Panel            In Range       Out of Range      Reference Range
Glucose                                                         148H                  65-99 mg/dl

Urea Nitrogen (BUN)                  25                                         7-25 mg/dl
Creatinine                                   1.17                                   0.70-1.25 mg/dl
eGFR Non-Afr. American            67                                     > or =60ml/min
Sodium                                       140                                    135-146mmol/L
Potassium                                    4.4                                    3.5-5.3mmol/L
Chloride                                      103                                  98-110mmol/L      
Carbon –Dioxide                                             18 L              19-30mmol/L
Calcium                                                         10.6 H             8.6-10.3 mg/dl
Phosphate                                    4.0                                  2.5-4.5   mg/dl
Albumin                                                          5.4 H                3.6-5.1  g/dl
Uric Acid                                       5.2                                     4.0-8.0 mg/dl

Hepatic Function Panel    

Protein Total                                                    8.4 H                 6.1-8.1 g/dl
Albumin                                                           5.4 H                 3.6-5.1 g/dl
Globulin                                        3.0                                       1.9-3.7 g/dl
Albumin/Globulin ratio                  1.8                                      1.0-2.5 (calc)
Bilirubin Total                                0.9                                     0.2-1.2 mg/dl
Bilirubin direct                               0.1                                   < or = 0.2 mg/dl
Bilirubin indirect                            0.8                                      0.2-1.2 mg/dl
Alkaline Phosphatase                  107                                        40-115 U/L
AST                                                                   41 H                    10-35 U/L
ALT                                                                    76 H                    9-46 U/L
Creatine Kinase, Total                   113
INR                                                                    1.2 H                    
PT                                                                     12.5 H              9.0-11.5 sec
White blood cell                            9.0                                      3.8-10.8 Th/uL
Red blood cell                              5.10                                4.20-5.80 mill/uL
Hemoglobin                                 16.2                                  13.2-17.1 g/dl
Hematocrit                                   48.3                                       38.5-50.0%
MCV                                             94.7                                     80-100 pg/ml
MCH                                             31.7                                     27.0-33.0 pg
MCHC                                          33.5                                       32-36 g/dl
RDW                                                                  15.2 H            11.0-15.0%
                                                                                                                                                                                                                                                                                                                                                                                

[pugdaddy]

Val,
NT77 has given you excellent advice...and the sooner your hubby can see the liver specialist, the better.  How wonderful that he has stopped drinking! That is the single best thing that he can do!  And wonderful too that he was able to get an appointment for next week (since the waiting time to see a liver specialialist doctor can often be several weeks).
I am also sending you a private message today, so please check your messages.

[NT77]

I'm so sorry for what you've been put through. At first I didn't want to say anything because the picture looked so bleak. It still doesn't look much better, but by quitting alcohol at least he showed some respect. People like you are my heroes.

So, Dee1956 mentioned Lactulose. Write it down and get it from the pharmacy. Here in Europe it's sold without prescription. It's some sort of undigestible sugar that somewhat lowers the ammonia levels in the blood, and most importantly, it does so without adding any additional burdens on the body. It's also a laxative, so don't overuse it.

You can also try and prevent any substance whatsoever that's not of natural origin from entering his mouth: traces of pesticides and herbicides on veggies and fruit. Peel the skin off of everything, including tomatoes. Then detergents icluding the dishwashing one, deodorants, shampoo... Any molecule that enters the blood, and doesn't belong there, the liver has to neutralize. Most drugs are in this category too.

Yellowing of the skin and a huge stomach are not good signs. If the ankles are swollen too, it means his liver is unable to drain the fluids fast enough. What's the color of his urine? Is it very dark? I'm gonna go ahead and say that if it's light, that would be most excellent news. The lighter, the better. Diuretics will somewhat relieve the fluid build-up, but at a price of creating additional burden on the body.

I disagree with the above suggestion to cut out red meat, as that's my staple food, and my liver is like that of a 12 year old, but I agree with cutting salt down to absolute minimum. If nothing else, liver is made of protein, and I'm not sure new cells are created by using glucose... But he's probably not eating at all, or is he? Eating would be another great sign.

If he keeps drinking it's all over in not too distant future. If he really quit, and if his liver manages to recover enough to resolve ascites (huge belly) and jaundice, he may very well live for years to come. If the liver stops detoriating any further, but ascites and jaundice remains, I don't know, it's really hard to say anything. First sign of improvement would be to get the ammonia levels down.

I'm terribly sorry this is happening to you and sincerely hope I didn't upset you any further.

[Val68]

You are right, it does not make sense to see him in only four months. This was the primary physician, he is the one who usually refers my husband to a specialist. I called the hepatologist today and made an appointment for my husband for next week. My husband is still in denial about the causes of his chirrosis and his condition.Up to two weeks ago he was still drinking, and was afraid that I would tell his physician (like he would not know this fact anyway) That is the reason he would not let me go with him to the appointment.  
We will get his lab results today, I will post it so maybe some people on this site could help me interpret the numbers and his condition. Meanwhile, I'm worried about his new symptoms and afraid that now maybe his kidneys are not working right. Thanks for your insight, I really appreciate every input from people who has more experience with this situation.

[pugdaddy]

Val68, you wrote:  
"....extreme pain in his lower extremities...difficulty walking....still having trouble with urinating....yet the doctor does not seem to be worried and told him to see him in 4 months."
Val, I am certainly sorry for what you must be going through - however this just doesn't sound right.  How could any doctor be unconcerned about such potentially serious symptoms?  And four months seems a remarkably long time between appointments for someone with "extreme leg pain" and difficulty urinating.
Is this doctor a liver specialist (hepatologist)?  Did the doctor tell YOU that he was "unconcerned" - or is this your husband's report?
And does anyone else share my reaction?

[pugdaddy]

what in the world is with these men who will not let their wives accompany them to a medical appointment? when they KNOW that they're already sick? dumbest thing...but i read it surprisingly often on these support sites!  i mean who in the world are they kidding?  guys, if you're fortunate enough to have a wife who cares, and is willing to help you try to get better - for heaven's sake don't try to keep her in the dark.  it's incredibly childish - and very unfair - just sayin.'

[Val68]

I'm so glad Hector got his liver. Just from reading his posts and getting a well given insight from him I realized  what I great person and patient he is.
Well , my husband went to the doctor, we will get his lab work this Friday. I will post the results. There is a major change in his condition though and I can't wait to ask your opinion. The doctor doubled his diuretic pills, but his legs are still swollen. My husband says he can't hardly urinate at all even with the double dose. He has extreme pain in his lower extremities and can't hardly walk. Is this something that is a symptom of his chirrosis? What about the urinating, do we have to be worried about that? Doctor did not seem to be worried and told him to see him in 4 months. I did not go with him, he would not let me. My husband did not touch alcohol for a couple of weeks now. Hope he keeps it up, and I just hope it is not too late.
Thanks for your insight, hope everything is fine with you!

[Val68]

Thanks, his appointment is on the 15th of November. I will post his results as soon as we know. I will also go with him to see what the doctor says.
Take care!

[Dee1956]

Please let us know how his appointment goes.  I hope that you can get him some help.  If not there is a good organization called Alanon.  It is helpful for people who are going through what you are.
Take Care

[Val68]

Thanks for your support and advice! I will post his lab results after his doctor's appointments. Hopefully it clears up some stuff for us. Meanwhile I will try to manage his diet and convince him to stop his drinking or get some help with his addiction.

[Dee1956]

I think you are right, if his ammonia is high and he is acting confused he may need a medicine called Lactulose. It will help his thought process quite a bit.
Let us know how he is doing.  He definitely should not be drinking. He should cut out red meat, junk food, any processed food like lunch meats have a lot of salt.  I am really sorry you are both going through this. I hope you can get him help.  If he continues this could kill him.
Dee