General questions for others with cirrhosis of the liver

[oscargerst]

My father, age 80, has cirrhosis of the liver.  His doctor identified it a year or so ago although my father believes he had it for a longer period of time.  My father was never a drinker and he has been told he has the disease because of a fatty liver (which was identified many years ago).

At this point my father has been to the hospital several times (4 or 5) - once for being very confused - I know this is due to ammonia levels (Hepatic encephalopathy).  We try to keep him out of the hospital because we don't want him to get an infection or something else that would be hard to deal with giving his condition.

Over the last year or two he has exhibited the following:
- slowed down to almost half speed
- trouble walking and now uses a cane
- sometimes slurs his speech
- more upset about life/situation
- still is driving occasionally but at a very slow speed. (I know he is driving less and less and certainly not as much anymore).
- he gets the fluid in his feet sometimes, goes on a diuretic and then off of it.
- he is always tired/sometimes very weak.
- he goes to get a cat-scan? twice a year, so far no cancer
- he goes a couple of times a year for his endoscopy - varices (he's had 10 or so over the last 2 years to deal with)  

My mother 76 is his caregiver but struggling lots emotionally.

He takes lactulose and xifaxan. He is always complaining about the gas and the bathroom issues (so much diarrhea and recently a fissure).

He doesn't have a large number of items he likes to eat, but my mother gives him chicken breasts (no/low salt) and some rice, soup, eggs, toast.  He cheats a lot and eats pasta, meat, etc.

Now for some questions:
1) what works for gas?  (he is taking GasPlus or something like that but that only goes so far)
2) what are the best foods for him to eat?
3) he has been told not to take any pain medication but I see on these boards Tylenol is okay?
4) anything to do about the tiredness, weakness?
5) any other suggestions to improve his daily life?

[flyinlynn]

Also his slurred speech is likely also from his HE

You may consider when it is time that he stop driving before he becomes a danger to himself and others on the road.

Someone told me a story about his wife's HE that they decided it was time to take her keys away when she called home crying just a few blocks away she was lost and couldn't figure out how to get home. She was in her 30's.

Here is a link to a documentary called "WRESTLING THE  MONSTER: LIVING WITH HEPATIC ENCEPHALOPATHY "

http://www.hesback.com

"WRESTLING THE  MONSTER: LIVING WITH HEPATIC ENCEPHALOPATHY  follows 4 patients suffering from hepatic encephalopathy. A matriarch and military veteran in northern California now finds herself housebound. In New Jersey, a beloved wife and mother saved by a transplant still struggles with lasting effects. A father in rural Oklahoma flounders with a condition he can’t comprehend. And a formerly high-functioning mother in Florida finds herself isolated and a shell of who she once was."

It is difficult to watch at times but it is very informative.

[oscargerst]

Yes on the HE.  Sometime's he is much better than others because of his Lactulose and bathroom visits.

[oscargerst]

Also, I've watched that video before.  Great video and yes, we are taking the keys away.

[flyinlynn]

Is he seeing a hepatologist associated with a liver transplant center? I am not sure if due to his age he is eligible or if other health problems make him inelligable for a transplant center but even so a liver transplant center has the best ability to provide care for him.

The transplant center should be able to provide him with a referral to a nutritionist familiar with providing diet information for those with ESLD. As far as medications for gas or anything else that is best asked of his physician.

For myself as a patient with compensated cirrhosis and a history of esophageal varicies I need to avoid NSAIDS like Advil or Aleve as well a aspirin because they can increase bleeding risk and we are vulnerable to having a serious bleeding incident. I have been advised if I need pain relief I can take Tylenol as long as less than 2000mg/day but I am still considered compensated so what is good advice for me may not be good advice for him.

Here is a link to a article about pain relief for those with advanced liver disease

Pain Management in the Cirrhotic Patient: The Clinical Challenge

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861975/#!po=11.8182

I also found this about transplants seems people over 70 have been able to receive liver transplants

Outcomes After Liver Transplant in Patients Aged 70 Years or Older Compared With Those Younger Than 60 Years

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770908/

CONCLUSION: Five-year mortality and graft loss in older recipients were comparable with those in younger recipients, suggesting that age alone should not exclude older patients from liver transplant.

Based on this if he wants a transplant I would get him seen by a doctor who works with a liver transplant center if he is not already. If he is already at such a facility and he wants to seek a transplant I would start asking questions about how to get him on the list.

Do you know his MELD score? The MELD score or model for end stage liver is used to stage patients for liver transplant. The score goes from 6 to 40 with most patients receiving transplants having a score of about 30 depending on the transplant center.

I don't know everything about all this but if you like you can message me and I will help as much as I can.

Lynn

[oscargerst]

Thank you!  I need to find out his MELD score.  He seems to see so many doctors - specialists in cirrhosis, GI doctors, etc. I believe his main cirrhosis doctor told me he was both too old and not as far along (i.e., needed to be in worse shape).

[flyinlynn]

Yes not sure about his being 80 but other than that his place in line is determined bu his MELD score so that would be the not sick enough. People who make it to the top on the transplant list are very, very ill.

[flyinlynn]

If you have his test results you can determine his MELD score if you don't have them some doctors have an online portal where you can view test results. Or you can get a hard copy either he can request or if he has authorized you to see his records.

Here is a link to a MELD calculator.

https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/

You only need his bilirubin, serum sodium, serum creatinine and INR to determine his MELD. For reference mine MELD score is 7. Six is the lowest.

I was diagnosed with cirrhosis in Jan 2008 nine years ago. I have mild edema and some small amount of ascities for which I take a diuretic Spironolactone. But other than the esophageal varicies I developed in 2012 that I had banded I have no other symptoms other than a low platelet count which has risen to 110 since I cured my hep c in 2015. Before I treated my platelet count was around 80 to 90 range.

Is his doctor associated with a liver transplant center? Can his doctor refer him to a dietitian who works with patients with ESLD? Or does he have any dietary recommendations. You hopefully know he needs to minimize salt intake to less than 1200 mg/day?

[oscargerst]

One more question:
6) I've been told that he is too old for a transplant. Is this true?