End Stage Liver Disease

OK--never posted here before--but my brother is 48, called me in beginning of March and said something was wrong.  He has been an extreme physical fit guy his whole life--not an ounce of fat--never drugged or smoked--but he did drink.  Got to his house--he was like a balloon--and totally yellow--OVERNIGHT!  Rushed him to emergency room--End Stage Liver Failure.  His MELD was a 17, then a 20, as of late has gone from that to 28, back to 20, now at 27.  He is HUGE!  His legs are so thick they are splitting!  The doctors had to tape them up last week.  He has had the brain encephalopathy, the confusion and disorientation--he appears to be better from that.  His abdomen is horrible.  He can barely move, he is wonr out, can barely breathe--has zero appetite--his muscles are wasting away--he is on all the meds--but what to do?  I think last friday they told him he needed to line up a living donor asap--he doesn't qualify fo rlist until August 18--but how does the body last this long??  We are blown away and scared at the speed with which this disease has completely broken him!  What can I/He/We expect?  I only hear of this condition winding up in death--I am not hearing a ton of survival stories.....    

Is he taking lactulose? Have the docs said anything about paracentisis to help with the bloating? Where are you located?

I just looked up the "paracentisis" and they actually have "tapped" him a number of times--but they drain very little and he gets bigger and bigger and bigger. He is incredibly uncomfortable and in terrible pain....

N2D , My case was very similar to your brothers . Can you get more detail on exactly what it is he is taking for the ascites ? I was diagnosed 3 years ago with Cirrhosis and renal failure with a MELD higher than him . Given prognosis of 3 months survivability , Had multiple paracentesis , Naval hernia due to adominal fluid build up and received a T.I.P.S . If I can help let me know .

A. Ziffle

N2D, welcome to the forum.  I'm sorry your brother is so ill.  I suspect, though, that he probably had some symptoms prior to crashing--fatigue, swelling are common ones.

Is there anyone who could be a living donor?  It sounds as though his liver has decompensated, meaning end-stage disease or failure.  Once they have biopsy results, they will know if he has cirrhosis (which is a permanent condition.)  If he does have it, he can delay its progression and perhaps stop it in its tracks, by continuing to abstain from alcohol and eating a very low sodium diet (which will help with the fluid retention), plus abstain from eating beef and eat a diet high in fresh fruits and veggies.

I imagine he is on diuretics (Lasix, Aldactone) to help manage the fluid.  But low sodium will also prevent fluid accumulation.

Read the information in the folder at the top of the page entitled Hepatitis Resources.  It isn't just about viral hepatitis.

Northwestern is an excellent hospital, so he's in good hands.  They may not want to do a TIPS procedure as it could be dangerous in his current condition.  Also, it causes increased encephalopathy in some.  He may not have time to get on the transplant list, especially because 6 months of documented sobriety is usually required.

Please do keep us posted on your brother's condition. 

Hugs,

Connie

n2d-welcome to healing well. i am sorry that your brother is so sick. 48 is too young to be so ill. it is very clear that you are a loving, supportive sister. i am sure that he appreciates that so much. please post back and let us know how he is doing.

emma

Hey everyone----sorry for the delay--rushed into

Northwestern on 21st and downhill ever since.  His MELD is 38.  He is on list--he is critical.  We are in family waiting area now all night....he is on dialysis daily because the fluid buildup is near 100 poumds..... 

New2Disease, thank you for the update.  I am very sorry to hear how critical your brother is now.  We can only pray for a transplant.  I will say that diuretics, while necessary, are very hard on the kidneys.  I can't imagine someone in that condition and with such a high MELD score, living as long as 4 mos.  But some, like Rick, do come back from the brink and continue to get better.

Hugs,

Connie

thank you so much! i will keep you posted.

I am new also--- My husband was diagnosed with hep c and cirrohsis in about 2005. It was ok up until about 3 years ago, then it started with the ascites. Got tapped several times. In Feb. 2010, he had the TIPS procedure done--which has been great for the water retention but--2 months later--encepholopy. Now we deal with that at least every other month. The first sign of that coming on is he sleeps ALOT. He is on 3 tbsp of Lactulose every 4 hours. When I see that he is sleeping alot-I double his Lactulose. Each time get worse with the encepholopy. Each time he has it--it seems to damage more of his brain. He is at the point now that he is slow thinking, moving and trying to prepare his words. His meld score was 16 in May. Not sure what it is now. He is End stage Liver disease. All I can do for him is pray. We are in the process of getting him on a transplant list--but he is also diabetic and the lactulose raises his blood sugar--so we have to get that under control before he can even get started on getting on the list.
I feel all of your pain out there, I know how hard it is on me and my children. Please be patient and loving and enjoy what time you have. We never know when our time with him will be up. NO ONE knows when the body organs will stop. Only God knows. I will be praying for you all.

Barbie, in the end it doesn't matter so much how one got liver disease, except in how they might treat it.

Hugs,

Connie

Thank you all for your responses. It is awsome to find a group that is going through the same things.
I had to take him to ER for chest pain the other night. They couldn't figure what was causing it-he has had previous gallbladder attacks. He was scheduled to have it taken out, but then the kidneys decided to shut down. Anyway---they discovered that red cells are not being made now, so had to have a tranfusion. Dr. said this will probably be an ongoing thing with the transfusions. Does anyone know about this? I guess the liver filters to various areas and it is not filtering so the bone marrow is not making cells?
I know this means it is getting worse, but how much worse? What comes next? What else can we expect?
He has had the tips procedure last Feb. It is awsome EXCEPT for now there is the encepholopathy about every two months.
I am continuing to pray for all affected with this.
Thank you for your support.

I am new here. My 41 year old son has esld. We are holding on to everything we can, obviously. I do have information for anyone, given my esperience. We just got back from 2 weekws at Vanderbilt. They gave gave us no chance, then he made a turn around. Just as long as you moniter sodium and blood levels, there isw a chance for a transplant. Sometimes, you dont't even need one.