Dad with ESLD

MJ68 , Welcome to HW . Sorry to hear your dad isn't doing well , I been there myself . I was diagnosed with ESLD ( Cirrhosis of the liver ) and my kidneys had shut down about 4 years ago , Came close to death a few times in the 1st year . I experienced huge volumes of fluid ( ascites ) build up in my abdomen and lost all muscle mass , I looked like a pregnant skeleton .
The doctors need to do a paracentesis ( Drain the fluid ) on his abdomen , If he is drinking alcohol he needs to quit NOW , Ensure brand drinks can provide a good source of nutrition to keep his body nourished , Xifaxin and Lactulose are the best treatment for encephalopathy ( Ammonia build up causes you act crazy ) , Watching his diet , When you get him to eat will help . I also as a personal side note believe that any activity that keeps his mind alert and off the worries of his struggle ahead can be useful , Reading , working with his hands and any simple activity seemed to work for me .
Have him get into a transplant program and seen by a Hepatologist , G.I doctors are very knowledgeable but don't specialize in Hepatology very often . The transplantation process can take awhile if Alcohol is involved ( as it was for me ) 6 months sobriety is required and monitored by the team just to get qualified . In the mean time if it becomes needed to reduce the fluid in the abdomen a surgery called TIPS can be performed . It worked well for me and a few others here and the results after it was done was amazing , Make sure you discuss that option with his doctors and understand the possible down side of that or any surgery he may need in the future .
Again on a personal note , Getting his legal documents together in the event he should pass on is something that he really needs to handle now . It's unpleasant but it will help with expenses and allow you room for grieving later should something go awry . He needs to also apply for financial aid in every possible form right NOW .
This disease doesn't always mean a death sentence . I was given 3 months to " Get my life in order " 4 years ago , It's been hell at times trying to keep my head above the water but through the struggle I found hope and a fresh start on life . The disease can be fought with good success but alot of that depends on the individuals aptitude and will to overcome the odds .

A. Ziffle

I forgot does he take lacoluse ? This helps with using the bathroom and getting toxins out ....and Mr ziffle made a good point about documents ..make sure you get a living will and a power of attorney for your father they are a must ....a social worker at the hospital can get you them . I know that seems scary but its always good to be prepared

MJ

Welcome to the forum. There is quite a bit of educational information at the top of this site. Reading and educating yourself is the best thing you can do. One of our moderators will log on later to welcome ou.

Where are you? US? UK? AU? Canada? Europe? We have members all over the world. Folks have been given different information about transplants depending on where they are.

We are in Florida. Just one year ago, October 2010, my Mike was told he wouldn't see Christmas! IF HE CONTINUED TO DRINK ALCOHOL. If he was sober 6 months, went to a documented program, and LIVED that long, they would evaluate him for transplant, even though he was 61 years old.

He also has Hepatitis C which he acquired from IV drug use -- he describes it this way -- "It was the '60s, dude..."

Our family could have written your post line for line...liver failure, edema really bad, weight loss, ow platelets and huge bleeding risk, not eating much at all, sleeping all the time, weak, etc etc...

That is how the disease works. He also had coke colored urine, freezing every minute of the day or night even when it was 99 degrees outside, vomited almost every day--often just dry heaves, had cramps in his extremities so bad he'd cry even fall down with the ones in his legs. He needed assistance some days to get from bed to couch.

And he was CRAZY. The ammonia level in his system had him grouchy, beligerent, unreasonable, confused, paranoid...you name it, our sweet Mike was really hard to be around.

BUT, with medication for each symptom, the docs were able to settle things down to a meadium roar. With abstenance he stabilized and DID LIVE long enough to qualify for a transplant program. As others have pointed out, they have a potion for most things.

Even if your dad doesn't qualify for transplant they may be able to make him more comfortable .

They ARE picky about who gets on the list. It is a very long complicated surgery and those with heart disease may not qualify. Of course, you don't qualify if you are using alchohol at all. I am not sure about the age thing....different states do that differently. The centers have a very high successrate for the surgery and 1 and 5 year tracking periods...so IF you get on a list and IF you get an organ, your chances are really good for some quality years.

Kidneys are always an issue...renal problems are VERY typical of liver failure also. My Mike was hospitalized about once a month for acute renal failure before transplant, but they put him back together with IV meds and supplement.

His legs were so big they wept fluid! Eventually, after months on large doses of two diurentics that cleared up. He gradually was less bed ridden and more reasonable, but not great.

He got his transplant May 1, 2011. He is gaining strength gradually, taking lots of meds. But he has no HE, no edema, no vomiting, less weakness, less tiredness. But because he has Hep C, he continued to HAVE Hep C and will have to deal with liver disease through the rest of his life.

Others on this site have had similar succeeses, but as Elle says, some have passed while some some struggle on.

I agree with others that you should find a specialist in liver disease. Our GI "fired" us when the situation got grave, referered us to a major medical center with the escalated care. One wouldn't go to a country doc for cancer treatment and so you need an expert for this...even if it is to manage the symptoms and make him comfortable during a decline. they can make the patients more comfortable.

Some on this site have been at the stage to need hospice and they have continued to share their stories.

You can use the Search feature at the top and put in a key word and posts on that specific topic will come up. You can tap on a person's name and their old posts come up, you can even step back through time and trace thier whole story.

There are plenty of websites with information, but this site has people and feelings and family stories. You will get plenty of support.

Post often, ask questions, look back at old posts.

You can edit your own posts clicking on the pencil. Give your post a title...maybe Father failing quickly of Liver Disease or something.

Best, Mama Lama aka Carol

MJ68, welcome to the forum. I am so sorry I wasn't able to reply until now. I've been having major computer problems. Also, without a subject, your post slipped past me. I have taken the liberty of giving your thread a title.

I really can't add much to what the others have said. I do think it's vitally important that your father be seen by a hepatologist and referred to a transplant program. You need to find out for sure what his "issues" are that would prevent him from being listed. Liver transplant candidates are assigned MELD scores (Model for End Stage Liver Disease) which will determine their placement on a transplant list.

You need to be very proactive with his doctors and his care. It would also help to get a Power of Attorney so that you can be given information and access to his records.

The informational folder that others spoke of is at the top of the page and entitled Hepatitis Resources. It's not just about viral hepatitis, but liver disease in general. You can get a lot of information there. Also check out the Caregivers thread.

Hugs,
Connie