How long?

[daddysgirl1970]

My dad had kidney failure almost 4 years ago - two years ago he was diagnosed with Fatty Liver Disease - SEVERE -
Never a drinker but is a diabetic, has thyroid disease and has always been a big man (not obese) but big.  

He is on dialysis 5 times a week (at home) and this is great - all his numbers come back good.  The only thing that hasn't helped is the Lactulose and (I forget the other pill) to help the Ammonia levels and confusion.  He has had more and more "missed" days.  Recently he was admitted to hospital with a fever of 102.9 - no signs of infections - just high ammonia levels.  He was released two days later.

He is having more "bad" days mentally then good.  Noone can give us answers - we know that it's going to get worse - his Meld was just under 20 six months ago... he CANNOT have transplant.  We went to Burlington MA to meet with specialist and he needs a kidney and liver - they won't do one without the other and the fact that he is so bad off - well, could be a waste of a donation.  

How long (usually) do families have to watch the ones they love suffer with this?  

He has had ascities drained once, he has the bleeding in his esophugus taken care of about every 3 months - he has had so many transfusions that they can't match his blood - his sugar is all over the place (thank you lactulose) - he is in the horrible cycle of what helps one problems hurts another.  The scars on his body from itching - the poor eyesite that even cateract surgery couldn't help - I wouldn't say he is "yellow" more like a bad tan.  It's brutal to watch - he is not pleasant when mentally confused, hard to understand - just looking for some ideas of who has gone through this - and when or what are the signs that it's getting worse?

[opaw503]

i have a end stage liver disease but i dont have money to buy the medications, now im still working even its very hard for me i live in a country that liver transplantation is very expensive.now im waiting for my time looking to the stars maybe some of them will help me but i know its not gonna happen..maybe even miracles cant save me now..im thinking to make the suffering much less i dont really know what to do..well im young and life is good for me this past years and thats all i can remember thank you for the experience all i can say.

[JamesMammaw]

my daughter's friend and former roommate has end stage liver cirrhosis and even after he was warned he continues drinking heavily. he is in hospice and has been back and forth between there and the hospital numerous times. He was diagnosed about one year ago that he had less than two months to live.  that was in May 2017 here it is August and he is still lingering. He now has amnesia and is paranoid about everything and everybody. My daughter is left with the task of being his POA and is keeping in contact with his parents to make sure that they are on board with what she is doing. Parents cannot come to see him for financial and emotional reasons. He now does not even know who she is nor who he is. He has broken windows at both the hospice and hospitals due to his seeing things that are not there. She was crying the last time she visited because he not only was disorentated he became very agitated at her presence and that he didn't know who he was or why or where he was. She just wants him to pass with as much dignity as possible and she wonders how much longer he is going to continue suffering and making his loved ones suffer as well.

[rpooo]

You know you are exactly right that “NOONE deserves to suffer and or be judged especially in a medical profession”. I have end stage cirrhosis from alcoholism, which in itself is also a disease. I had to learn a very hard lesson I will spend the rest of my life dealing with it. There are no take-backs or undoing. Being an alcoholic has not made me a bad person in the eyes of my loved ones. What has made me a bad person is how I allowed the drink to destroy my health since without any doubt will shorten the amount of time I have left with my loved ones. I must tell you though my heart really goes out to those who have found themselves in the same position as myself through absolutely no fault of their own.

Let me try and explain the MELD a little better. You said “19 = 6% but 6% of what?”
If you have a MELD score of 19 then there is a 6% chance your condition will be fatal within 3 months due to liver failure.

The MELD score is made up of three parts:
Bilirubin which measures how effectively the liver excretes bile.
INR which measures blood clotting factors.
Creatinine which measures kidney functions.

Dialysis also plays a role in this calculation.

The MELD score system ranges from 6 (less ill) to 40 (gravely ill) although a person’s MELD score can fluctuate rather quickly. Here in Nashville Vanderbilt transplant center are doing transplants when possible with a MELD of 25. Although this was 6 months ago.

You can calculate the MELD score yourself using the link I have provided below and his latest lab test results. If you do not have a copy of the results he can request one. Creatinine and bilirubin can be found on the comprehensive metabolic panel (CMP) portion of the test. INR or prothrombin time (PT) is a separate test in itself. You may need to make a request for it to be performed each time.

http://www.mayoclinic.org/meld/mayomodel6.html

His doctor may already have it calculated and he could just ask what it is if this is an easier route. Personally I chart all of my lab data using Microsoft Excel for easier monitoring and keep copies of all blood labs and imaging.

I hope the best for your you and your dad and I understand this is a really hard experience but do your best to also take good care of yourself through all of this.

Randy

[HectorSF]

I am sorry for your dad.

I understand exactly what he is going through. I am End-Stage myself and so where my my two best friends before transplant. They have MELD score of 42 and 43 if you wan to imagine many comas they were in. Yes we nave experienced all the things your father has and more.

I have taken Lactulose and Xifaxan for over 3 years and understand all of your father symptoms. They are typical of HE and most patients with HE experience them.

If there is anything I can help you with let me know.


Hector

[daddysgirl1970]

thank you - I've tried to read about the MELD -
19 = 6% but 6% of what?  It's all very confusing and I know each person is different.  

For us, the hardest part - is the compassion level that is given - it's not.  People hear liver disease and automatcally go to, "well they did it to themselves" - drinking.  

Well... that is not the case with my father but regardless - it's not kind.  NOONE deserves to suffer and or be judged especially in a medical profession.  I have filed MANY complaints.  The rule of thumb in any medical field is treat each patient like they were a member of your family - is the quality of service you are giving, what you would want for your parent?    

[daddysgirl1970]

Thank you -
My dad has gone to Burlington Ma and is being seen by a Kidney Specialit, Liver Specialist and has his Diabetes monitored as well as his thyroid.  

Regarding the Lactulose - it is given to him 3 times a day and at Specialist order - has been increased.  He does not have regular bowel movements - it is constant - there isn't much more that can be done.  He needs to meds to avoid a coma - very little else can be done to help.  As I stated he has had ascities drained once, which is very painful and with each drainage, dangerous.  

I did forget to mention that they found a spot that they are unable to test because of his health condition.  Cutting into him would not be in his best interest - they also found a large spot under his rib cage that they are concerned about - but again, they said of all the "evils" in my dad's system, if he did have Cancer - due to his liver not working - his options are limited because he can't have any narcotics as his liver can not process them.  He was very sick about 10 months ago and they gave him something (can't recall what it was) but it put him in a coma for two days.  

We haven't had his MELD done for about 6 months - why?  

The things that are most bothersome is that my father was always a very classy man.  Dressed well, well groomed, told jokes but was always mindful of his audience.  He now is inappropriate with his words - he still (thank god) has a grip on his actions - if he was aware of how he was acting he would mortified.  

He misses days - I spent an afternoon with him and the next day went over again and he didn't even realize I sat and visited with him.  

He eats ALOT of Chicken - it's his main food choice - or Turkey.  However, his diet is so specific because we are also dealing with Kidney Failure.  He also has to be mindful of his fresh fruits (high sugar) and his fluid intake is monitored because of his kidneys - even being on dialysis 5 times a week, it's awful.  

One of his specialist was hoping the Burlington Ma would reconsider on the liver - but they were adamant that looking at all their tests, his heart tests, the scans, etc - his mortality survival was minimal.  He has some functality to his liver and we can control his kidneys a little with dialysis.  There is no magic machine for the liver.

We do put on a special location to help with the itching - it's in his sleep that he digs - he dug so bad that he had an infection which was treated with iv antibiotics during dialysis.  

He is getting 100% proper care - I don't know if it's kinder to suffer through a disease that has no chance of survival without a transplant.  It's not comfortable for him - it's not easy on the family or on him when we explain that it's Saturday and he gets angry because the last day he remembers is Wednesday.  It's not fun to argue with him to take his meds because he is sick of being "tied" to home or close to a bathroom.  He cries because he is embarrassed or lonely.  My mother is a SAINT!  She doesn't argue with him but she is firm.  

It's just not fun to watch - we see a decline most days - sometimes we wish he would go peacefully into a coma and then we get selfish and want him to wake up and be with us.  

[HectorSF]

I am very sorry to her about your dad's condition. Advanced liver disease is a very painful illness for not only the patient but the family as well. Many average people have never since these complication of liver disease before so it is very upsetting. Especially when a patient develops HE and their personality changes and they go into a stupor and are not coherent a lot of times. It is not intuitive that the liver can affect all of the body systems it does including the brain. HE is caused by the damaged liver's inability to clean toxins from our blood. These toxins are created when we digest food  and can also be trigger by other health conditions.

The most important thing you can do for your father is to have your father under the care of a liver transplant clinic and a Hepatologist (liver specialist) who will consult with a kidney specialist. I understand that he can not have a transplant, that is not the issue, ONLY a liver transplant center can manage and care for someone with advanced cirrhosis and kidney failure such as your father has.

Liver disease is a progressive illness. Meaning, over a period of time it only gets worse. So please help your dad get the best care he can to relieve his suffering and so he can increase the time he has remaining and the quality of his life.

Is your dad going to the 'Lahey Clinic Medical Center' in Burlington, MA for his liver and kidney treatments? If so, I'm afraid they are probably doing every thing they can for him.
Make An Appointment [phone]
* Nephrology
Department of Nephrology members have special interests in the diagnosis and management of renal disease.
* Gastroenterology
'The Department of Gastroenterology is comprised of 17 full-time staff physicians who see nearly 30,000 outpatients per year for a wide variety of GI and Liver diseases. The Department is particularly known for its expertise in inflammatory bowel disease, liver disease, biliary tract disorders, diseases of the pancreas, colon cancer screening and motility disorders of the esophagus.'
'Lahey Clinic provides an excellent environment for an interdisciplinary approach to disease. Physicians are geographically and philosophically closely linked, thereby facilitating informal discussion and consultation on routine and difficult management issues.'

If not he should go there or 'Massachusetts General Hospital' in Boston.
Liver Transplant Program
Call 877-644-2860 to request an appointment

His level of cirrhosis is known as 'decompensated cirrhosis'. This is when the liver is no longer able to perform all of its functions because it is too damaged. So the patient experiences the complications of cirrhosis, ascites, hepatic encephalopathy, bleeding varices and many others. Each of these complications if not managed properly can be life-threatening so they must be treated very seriously! It is these complication that advanced liver disease patients usually die from, not the actual failure of the liver.

'How long (usually) do families have to watch the ones they love suffer with this?'  
No one can say. But what we can say is that without proper care he will die sooner than he might have to and will suffer a lot more.

Hepatic Encephalopathy (HE) can be triggered by many things. Dehydration, infection and a ton of other things that have minimal affects on a healthy person but can be fatal for us with advanced liver disease.

'The scars on his body from itching'
Itching is common in advanced liver disease and can be caused by a number of factors including a high total bilirubin level. A high bilirubin also causes the patient's white of the eye and skin to appear jaundiced (yellowish). The skin can also appear tan or grey. The person loses muscle mass and ends up looking like a skeleton. It is a very horrible disease. There are topical treatments that can help with itching but the underlying cause, is his liver disease, can't be changed unfortunately.

There are only two treatments for HE. Laculose and Xifaxan (Rifaximin). They work in the vast majority of patients until they get to end-stage liver disease. At that point there no longer work. That is called refractory HE. With a MELD score of 20 usually HE can be managed. The most likely reason your father is still having symptoms of HE is that his dosages are not correct. Lactulose must be taken throughout the day 3-4 times until a patient has 2-4  'loose' bowel movements per day. NOT diarrhea! Diarrhea causes dehydration which leads to worse HE! Xifaxan should be taken orally 550 mg twice a day.

Obviously liver disease in itself is very complex. Combined with kidney failure, even more complex. Only specialist doctor can help him with his advanced disease.

Best of luck to your dad and yourself!
Hector

[rpooo]

Hello and welcome to MedHelp,
I am very sorry to learn of your Dad’s condition. I know it can be very difficult watching one of our loved ones go through this. These high ammonia levels are the direct result of a condition called hepatic encephalopathy (HE). As you probably already know this is the primary explanation for his behavior.
Symptoms being :
• Breath with a musty or sweet odor
• Change in sleep patterns
• Changes in thinking
• Confusion that is mild
• Forgetfulness
• Mental fogginess
• Personality or mood changes
• Poor concentration
• Poor judgment
• Worsening of handwriting or loss of other small hand movements
More severe symptoms may include:
• Abnormal movements or shaking of hands or arms
• Agitation, excitement, or seizures (occur rarely)
• Disorientation
• Drowsiness or confusion
• Inappropriate behavior or severe personality changes
• Slurred speech
• Slowed or sluggish movement
Patients with hepatic encephalopathy can become unconscious, unresponsive, and possibly enter a coma

I think the “pill” you were trying to think of is called Rifaximin (Xifaxan). The first thing everyone is told when having problems with HE is to avoid red meats. Protein can be obtained through other sources such as chicken, tuna and salmon. Hopefully this in combination with his medications will have him feeling better. If his condition becomes more severe then hospitalization should be considered.

Much more information can be found at:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001347/

or

http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/hepatology/complications-of-cirrhosis-ascites/
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“How much time does he have left?”
This is always one of the toughest parts of this disease and there really is no answer. Liver disease is very complicated because there is a lot to consider and even for an expert with the ability to look over test after test no one can predict how one patient will respond vs. another since everyone is different. The most we can do is gain an understanding of what is called the MELD system. The Model for End-Stage Liver Disease, or MELD, is a scoring system for assessing the severity of chronic liver disease. It was initially developed to predict death within three months of surgery in patients who had undergone a transjugular intrahepatic portosystemic shunt (TIPS) procedure, and was subsequently found to be useful in determining prognosis and prioritizing for receipt of a liver transplant.
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
You can read more about the MELD system at: http://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease
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I hope this information will help you out and I wish the best for you and your family. Take care.

Randy