Looking for answers.. and a shoulder to cry on

Hello all, this is my first post here and I just need to get some things off my chest.

I'm 21 and have a four year old daughter, and the only other family we have is my disabled veteran dad, who has stage 4 cirrhosis due to Hep C. He also has diabetes and high blood pressure and a history of bronchitis and other lung problems. He switched from the pills to the insulin shots earlier this year. He was hospitalized once last year for chronic bronchitis and again this week for what I thought was the start of the end.. elevated ammonia levels. When I found him he was extremely disoriented and confused, was slurring his words and had sustained a bad head injury the night before. I was terrified and had no idea what to do, so I dragged him to the hospital (he never admits to being sick enough to see a doctor) in hope of finding out what was going on. The doctors didn't tell us much at all. The ct scan and ekg all came back normal so that compounded my confusion and panic. When the blood work came back they told us his ammonia levels were high, but didn't bother to explain to us that that can cause confusion, memory loss, black outs, etc. Thanks to you guys here on this forum I feel more confident in understanding what's going on.

They prescribed him the Lactalose for the short term and after doing some reading here it seems that I might should pick up something with electrolytes in it to keep him healthy while he takes it. I'm still scared, and I feel terrible that I let this happen right under my nose. This is the first time we've dealt with high ammonia levels. Is there anything I should know that might come of this? Will he need to be on this medication forever or do these ammonia levels ever sort themselves out, and what causes these levels to go wonky in the first place? Is there anything I can do or anything I can watch out for that would point to his condition deteriorating? The doctor at the hospital was very blunt and told him that he is going to die. I feel like my time with him is slipping through my fingers.. I don't know what I can possibly do to make this easier on either of us.

Hi ejsmom,

Welcome to the forum.

We are a group of patients and loved ones of patients with liver disease.

There are some informational posts at the top of this forum that may help. And I can see that you have been reading some posts to get more information. That is why we are here, to help others by sharing our stories.

Hep C is a chronic disease and can often lie symptomless for years! Years! Mike was infected in 1969 or 1970 as a young guy experimenting with IV drugs. He didn't even know he had it until he tried to give blood one year at work and they told him not to donate, that he had Non A Non B Hepatitis...no one even said the word Hep C for a few more years. In 2003 Mike tried a treatment with Interferon and Rivabarin that did not work. As Hep C has several types, his type is hardest to treat (1a) and so he did not clear the virus. From 2003 until 2009 things went along prettty well until he started to get sicker...fatigue, low blood counts, more fatigue, bleeding from the bowel, etc.

But no one was REALLY clear that he could not have his gin and tonics, beer and footfall, or wine with dinner. Not until he was REALLY REALLY sick did a hepatologist tell him he had 3 months to live if he kept it up! AND that he needed to be alcohol free for 6 months in a documented program (in patient/out patient/or AA) before he could be considered for transplant.

So a lot of years went by between infection and the pearly gates...but that is the path!

Mike joined AA, got on all the meds (lactulose, xifaxan, bp meds, etc) and made it to transplant. They found a small liver tumor just before his transplant. He still has Hep C, though, and will need one of those treatments down the line I"m sure.

Is you Dad alcohol free? He needs to be. Is he seeing a hepatologist at a major medical center? He needs to be. The GPs and community GI docs are not equipped to do the transplant evaluations.

I don't think the diabetes will keep him out of a program...but only a doc would know. Mike was insulin dependant for a while and now he is not. The anti rejection meds had him all mixed up.

The high ammonia is pretty typical of liver disease...eventually most of them get it. Put Hepatic Encephalopathy in the Search about these posts and you should find a lot of posts about it. I chucke about some of them...the day one of our caregivers found Hep C hubby waking the horse on a major road becasue the grass was too bumpy, or the Hep C hubby who was prono to midnight walks in the buff.

Has anyone tried to talk to you about one of the new treatment regimes for Hep C...a 3 drug program. There have been some good statistics about clearing the virus entirely!

You aren't letting him drive when he is like this are you?

Well, if you have more questions just post them. WE'll try to help.



Best,
Mama Lama

Hi, Ejsmommy, and welcome to the forum. Regarding the ammonia levels, they elevate because the diseased liver isn't capable of filtering all the toxins, so they go to the brain and elevate the ammonia level, producing odd behaviors. Lactulose (and sometimes Xifaxan) are given to treat this through multiple BMs. If the dose of Lactulose he is getting doesn't seem to be helping, you can increase it without permission from a doctor--he won't overdose on it.

Does your dad drink alcohol? If so, he needs to stop. It is the worst thing for the liver. Has anyone mentioned hep C treatment or being evaluated for transplant?

Hugs,
Connie

ejsmommy,
My husband is a veteran, got great medical care and transplant thru the VA. Some VA facilities are less equiped for your Dad's condition. Educating yourself thru this website and the experiences of others here will be a big help to you. At 55 years old and not drinking or using drugs, transplant sounds like the answer to me!! I am not a doctor tho, and do not know all of the circumstances.
If you are able to speak to his doctors, call them and ask them what he has to do to get on the list! Get his power of attorney on file at the VA so you can ask these questions.

Where are you located? I have met people from all over the country, between Transplant evaluation,and the actual transplant, and I may be able to help you. Asking the right questions, by educating yourself shows interest, a will to live, and makes for better communication with the doctors.

Debbie

Ejsmommy, regarding "all the medicine" after transplant: Initially there were quite a few drugs, but I am now 7 1/2 months out from transplant and only take 3 pills that I wasn't taking prior to transplant: Prograf, Acyclovir, and magnesium oxide. I take quite a few vitamins and some sleep inducing meds at night. It becomes routine, along with daily weight, BP, and temp. Since mid-March, I'm also taking oxycodone for a painful leg ulcer, but am weaning off of it as the wound is healing and pain decreasing.

Hugs,
Connie

Here is the link to the MELD calculator: http://www.mayoclinic.org/meld/mayomodel6.html

Hugs,
Connie

If a person is going to die of liver disease without a transplant and has a sufficient MELD score and is sober, then he'd be eligible for a transplant.

Hugs,
Connie