My dad has esld...alcoholic cirrhosis

I will give you a bit of a background, it is very hard for me to talk about. My dad has had liver problems for about 8 years now, he continued to drink even after he had a massive bleed out 2 years ago due to his esophagus. He got a blood transfusion and in time felt a bit better, then drank beer for 2 years after that. Jan 31, 2014 was his last drink, he has gone down hill since Xmas. First ambulance trip, low oxygen level 70%. Within a month after that HE episode, hepatic coma for about 2 days they gave him lactalose by enema and he came to(which has been the worst part of cirrhosis). May 4 at 5 am rushed by ambulance , it was a traumatic experience as the 1 st ambulance would not take him due to being a bit combative, they left and 30 mins later he almost died in front of me, my mom and my sister. 2nd ambulance arrived and took him so fast out of the house, he was grey, his jaw dropped and wasn't responding at all. They almost lost him 4 times in the ambulance. He was in a hepatic coma from Sunday morning 5 am until Monday night started coming out of the coma. He was released yesterday and at home now. Very weak, he looks like a skeleton and has a hard time walking. He had a liver specialist appt last week ...he has to wait until July 3 to go back for evaluation and possibly be listed. He told my mom yesterday the doctor gave him a year to live, what do we expect to happen, I'm scared for us and my mom is about 30 mins away out of town with him alone.

Hi Themiz, thank you for your reply. I posted some above. But his blood work on Sunday was. Bilirubin 50, creatinine 300, INR 2.0. He is 56 years old. They did bloodwork yesterday I know it did improve since Sunday, since they released him, but I wasn't given the updated bloodwork numbers as my mom picked him up at the out of town hospital.

It looks like we were posting at the same time. Thanks for more info. ESLD is the same for most everyone with it. My husband also has HE, and had a seizure from HE with a 3 day hospital stay. I am alone with my husband, and have been for a long time. We moved last year to be near a transplant center.

If your Dad is not on Xifaxan and Lactulose, then he is not getting the best results to combat the HE. As you saw, they enema Lactulose for those in coma...so increasing it when he starts drifting is vital to keeping him from having the worst episodes. One other thing. What other meds is your Dad taking? If he takes anything in the benzo category, Ambian, or pain meds, he will have a difficult time keeping HE away. Let me know more on the meds and lets take a look.

I am so glad your Dad quit drinking. What transplant center are you looking at? You can see from themister's info below, we are in AZ at Mayo Clinic. What is he doing now to get the sobriety documented? He must have it documented!! Big Hugs,

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themiz

Wife of themister, a fine man living with ESLD.
Eradicated Hep C geno 3a SVR July 2012-- TIPS, HE, January 2013
Transplant list, Mayo AZ- July 11, 2013 MELD 14

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”
Kahlil Gibran

The worst part and most traumatic part of everything was last Saturday night when he almost passed in front of us, and the emergency team left us alone !!! I have put a complaint in to the ambulance supervisor he is doing an investigation. I don't do well with watching him deteriorate but my mom needed us there and it has been very traumatic to us all.

Hi S&S - and Welcome to HW/Hepatitis! Yes, you are posting in the right place - it says 'Hepatitis' forum, but it's for all types of liver disease. I'm so sorry about your Dad. I know how devastatingly difficult this must be for you. But you have come to the right place to ask questions, vent, cry, whatever you need to do. And please keep checking back if you don't see any responses - some days and times are slower than others.

You say that your Dad had his last drink on Jan. 31st - that's a good thing - he will probably have to have documented sobriety for 6 months to be eligible for a potential transplant, because he is such a 'recent' drinker. Now about his recent labs, I think you may have meant 3.0 for his Creatinine - the 'normal' range usually tops out at 1.1. Taking those 3 results, his MELD is about a 39. The MELD score is a way to determine how sick the liver is and is used as a basis for transplant listing. Depending on the center, transplants are performed with minimum MELD scores from the 20s-30s. The evaluation process varies between transplant centers, but is quite involved - blood work, CT scans, MRIs, Ultrasounds, x-rays, EKGs, etc.

Your Dad is very ill, no doubt about it - but we have members here who have literally been at death's door and fought their way back. And that is the key - the will to fight and fight hard! I can't imagine how hard last Saturday must have been - my heart goes out to you. And you are right about the H.E. - it is a horrible thing to witness (and to have). Keep up the Lactulose no matter how much he complains!

Well I just wanted to stop by and Welcome you. This is a wonderful place full of caring, knowledgeable folks - so please hang around. (Try to) have a peaceful day.

Scared, Welcome to the forum. I survived some pretty rough bouts with alcoholic induced liver disease. I have been in Kidney failure, Coma, HE and my liver is hanging on by a thread (Thick thread ), They estimate I have roughly 15% function but I feel good pretty much all the time. Good to know he stopped drinking but he has to focus on sobriety requirements. Here in the US we are required to provide six months of consecutive, documented sobriety. That may differ in Canada, Don't know.

He needs to be getting protein right now so get him some form of protein/nutrient based drinks. No salt and plenty of veggies. No red meat. Chicken and Fish are easier on the digestive process. Get him to some form of AA or therapy for addiction documentation. Lactulose and Xifaxin should taper or knock out HE problems so get him prescriptions for both. No tylenol or other meds without doctors approval. No alcohol, Glad he quit by the way. Make sure he's committed to stay that way.

Ziff

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" Never try to teach a pig to sing , It wastes your time and annoys the pig . "

I have a question, when your creatinine level is 3.0. Can this number get better once you are out of the HE coma, or will this number stay the same? I know it has to do with your kidney function and 3.0 isn't good.

I also have another question my mom and I were wondering about. He has mottling around his right side of his stomach and into his back. What is this???? It looks like bruises, my mom said it looks like hickies, it's very weird. The hospital couldn't exactly tell us as they never have esld patients, and they didn't transfer him to a bigger hospital, it is a very small hospital in the country, 30 miles outside of winnipeg city. Does anyone know what this could be, bleeding? Bruising from laying on that side all the time? His liver crying out for help? We have gone through EVERYTHING except stomach bleeding, is this what this could be? Thank you everyone so much.

Just saw your other question! The 'mottling, hickies' you described are more than likely bruises caused by low platelets, another symptom of ESLD.

Splash dancer, can you explain to me how you got meld score of 39? Thank you for doing that for me, can you explain, I kind of know how to calculate it, but not 100% sure. Thank you!

There's a saying and it goes something like....."You never know how strong you are until being strong is the only choice you have." This is never more true than when dealing with someone you love having a chronic/terminal illness. You sound like a wonderful daughter(?) (sorry, I'm guessing!) and your Dad is very lucky to have you in his corner. He is overall very lucky to have the support he does, in your Mom and you and your sis - many don't.

You asked how you guys can help your Mom. Be there for her. I don't know how close you all live to each other, but take turns spending time with your Dad, running errands for her, even just lending an ear. It's really hard to say when she should take leave from her job. She'll just have to take it one day at a time. But someone does need to check in with Dad. No access to a car as long as he exhibits symptoms of H.E., no access to guns/large knives - H.E. really messes with the brain and can cause sufferers to do/say things they wouldn't normally do (as you've already seen).

One thing I wanted to mention. Is your Dad getting drained at the small hospital you talked about - the one that doesn't have experience dealing with ESLD patients? I'm asking because that is a little worrisome. Are they giving him infusions of Albumin when they do the paracentesis? It is not usually needed if the amount drained is small - but with anything over 5 liters, an infusion of Albumin is needed.

I know what you mean about comas. My fiance was in a coma for 11 days before he died this past Feb. 11th. It was heartbreaking. For 11 days, I talked his ear off - what I would've given to hear him tell me to "shut up, already!" The amazing thing was that although he was totally unresponsive to pain stimulus and commands (he did look at me a few times when I called his name though) - 6 separate times, he returned my kisses - I will treasure that forever!

Hope I answered your questions. Have a peaceful day.

Oops, just saw your question about the MELD score. You take his Bilirubin, Creatinine, and INR and enter it into the UNOS MELD calculator, hit 'Enter' and it gives you his MELD. Here is the link:

MELD Calculator