new here with question

Hi. Lactulose is only effective if it's taken properly. Doctors generally prescribe it with a recommended dosage to be taken so many times a day. What is not always understood by the patient or caregiver is that you can't overdose on Lactulose. It's intended to be taken until it's effective. In short, he needs to be taking it till he has diarrhea, basically, and even after.

Lactulose is a synthetic sugar and once ingested causes loose bowel movements and gets rid of excessive ammonia . I'm not sure why the sugary substance attracts the ammonia to the stomach but it does work if taken properly. This brings me to the next question: Who is making sure he is taking it properly? As you probably see he is likely in no condition to be dispensing out his own medications and most people, including myself, hate the taste of Lactulose to make a bad situation worse.

Is his cirrhosis due to alcoholism or something else? It would be helpful for us to know a little more detail to his medical issues so we can give you some good advice. Our little group here has many people with different types of liver disease and causes. We also have an excellent group of people who are caretakers to loved ones with the disease. Welcome to HW and feel free to ask all the questions you like. There is a search feature in the upper right hand of this screen that can also answer some general questions, if you put in a key word.


A. Ziffle

Post Edited By Moderator (hep93) : 6/5/2013 8:29:52 PM (GMT-6)

Hi K8

Welcome to the forum

I am the partner of a man who has been to he-- and back. Many here have.

He had a transplant 2 years ago after 6 months sobriety and almost daily AA meetings. This was required for the transplant list and his calendar had to be signed by the leader.

He had all the same symptoms you describe. They told him 3 months tops. End stage, etc BUT what they meant was he had 3 months left if he didn't change his ways.

Some with alcoholic liver disease can come back if the damage isn't total

But Mike had HEP C and a tumor also

So tick tick tick. He was running against the finish line

It worked out pretty well. But. Folks with Hep C still have it and the process usually starts again. If he were to drink alcohol he was get sick mire quickly

Some types of autoimmune Hep are serious and folks can get really sick really fast. But those folks can have a pretty normal life so long as they take their meds and don't drink!
I'd like to know more about his medical situation

Hugs
MamaLama

Get a copy of his blood work. See if they even checked his ammonia level.
You don't specify what his MELD score is. You can calculate it if you have his recent blood labs.

So he's not totally unresponsive and you say he's not eating at all??
I think I would find a better hospital. So what ARE they doing in hospital? Has he seen a specialist? Need more detail

Hi siblings, I am themiz,
Can you clarify one thing for me, please. What do you mean by his score is up to 3 months from 2 months ago? I think I understand you to mean he is 3 months sober, vs 2 months sober. Transplants are based on MELD. Your brother needs to be clean and sober for 6 months under the rules. Today he would be 3 months sober. That is all I can figure you mean. Clarify for me, ok? Just trying to help you folks.

He needs to live 3 months more and have documentable sobriety, from what I understand. He then needs to be sick enough and pass the other transplant criteria for a transplant list.

It appears he is indeed having HE(hepatic encephalopathy). A lot of ESLD people have been through these hospitalizations...and lived to tell the tale. Hang in there. He is in hospital, where he needs to be.

Best to you all, and big hugs. themiz

Hi, themiz. The MELD score is to determine his survival rate. From what the nurse is saying, 2 months ago, he had up to 3 months to live. He's only been sober around 2 months. He was diagnosed with HE about 2 weeks ago. At the hospital he's at, they require one year sobriety. The doctors told my mom to try to take him to Dallas or Houston where they may take pity on him because of his age, but I don't think that will help. Thanks for the input.

Mae, I know he won't make it long enough :( I don't think he'll live even another month. I was mainly wondering if the symptoms he has now are meaning he's at the end of his life. I wish I could corral the doc, but it's hard to do when I'm at home. I have 3 children (the youngest is 2) and it's hard to get out there. I've been to the hospital twice now, and have only been home a week since the last visit. I'm not sure why they aren't stopping the bleed either. The only thing I can come up with is there's nothing else they can do for him, or it may be because he has no money or insurance. He's sick and my mom is drugged up on pain pills, so it's really hard to get any good answers. The first time he was in the hospital, I called the nurse's station and they asked him for his permission to discuss his condition with me. He gave it. The nurse I talked to today said she can't tell me anything even with permission. So, I'm a little stuck unfortunately. My mom usually doesn't know what is going on, and it's only her there with him right now. Thank you :)

+1 on Mae's post.

My husband is year 8 of stage 4 Cirrhosis. A lot of up's, down's and a few life threatening hospitalizations/surgeries along the way. Just so you can see how MELD worked for him.

MELD from 2005-post July 2012-=6 or under
MELD Nov 2012=12
MELD Dec 2012=12
MELD Jan 2013= 11
MELD same week in Jan 2013=12
MELD Feb 7, 2013=14
MELD two weeks later in Feb=14


He was told in December he could/should look into getting a transplant evaluation. He does not appear any worse than he was in Jan, post TIPS procedure (also known as "a bridge to transplant").

There are people on here who have moved up and down the MELD score ladder. Some settle into the teens and just sit there awhile. Hope this helps. Good luck with your brother this week. Hugs, themiz

I'm not sure which centers, if any, take Medicaid but maybe someone will know. In the interim I guess I would start calling places maybe asking for the financial office? I've never been without insurance so I can't say. It's very possible that somewhere he may get accepted due to his young age.

I would get a notebook, have mom start collecting all his records (if any) and don't stop calling until you find a place. You want to make sure you did everything possible for him, where he is dependent on you ladies now. Another sister could be calling the actual staff doctor and plead for some action. I sure hope you have some luck.

I'll give this a bump to the top during the day in hopes more people will chime in.

Hugs,

I'm kinda lost with all this back and forth but I'll give you my understanding of what's going on . You need to get him admitted into another hospital immediately . Not to go into a long story but I had a very similar experience with medical care at a local hospital about 10 minutes from my house . Suffice to say they almost let me die . My family came up to see me 1 week after I was admitted to that hospital and abruptly had me transferred to a hospital a hour away from my home . That move saved my life .
Alcoholism carries a stigmatism in the medical community just as it does in normal life . You are guilty until proven innocent basically . Doctors will not put a lot of effort into getting someone better if they are under suspicion of still using . That's where the catch is in being treated , You have to remove the suspicion and show the will to fight to stay alive . Doctors are every bit human as you and I and they can only take so much of seeing the revolving door addicts before they give up on the whole crowd . Get him to a hospital that you have a fresh start with and if your brother survives this initial hospitalization he will have to commit to being sober to move on to the next hurdle . Don't focus on long term plans . He needs help now .

The hospital should be administering Lactulose every hour or so until he comes out of the ammonia induced stupor . They may be doing this as you indicated he is going to the bathroom repeatedly . They should be giving him Xifaxan also to help the effects of the Lactulose . He needs to stay hydrated so an I.V will likely be given to keep him nourished . They may be giving him diuretics to ease the swelling , This is a double edged sword . Too much diuretics puts a strain on the Kidney's which may already be in bad shape and may cause them to shut down . Medications are a balancing act with liver disease and no two people use the same dosages of everything so guessing is not a option .

I'm giving you a basic quick response but if you need further information or just have a simple question just ask . I myself am a recovering alcoholic 5 years sober . I quit when I was admitted to a hospital with End Stage Liver Disease and Renal failure . They said " You wont likely survive 3 months " , That was in 2008 .


A. Ziffle

Post Edited By Moderator (hep93) : 6/11/2013 4:51:58 PM (GMT-6)

Oops didn't see Ziffle's post til just now. Very good advice from someone who knows!

Ziffle, thanks for the feedback. Congratulations on being sober and for getting better. He quit drinking before he got the nosebleed and bruising. He's been in the hospital for a month out of the 2 months that he's been really sick. The doctor's at the hospital where he is now told my mom to take him to Dallas or Houston to see if they would do a transplant (take pity on him). I'm not sure if that's what she's going to do or not. They are giving him the Lactulose repeatedly. The thing is that is ammonia levels are fine. With his low blood pressure the other day, it sounds as if his organs are shutting down. It seems as if the internal bleeding is coming from his liver instead of varices, which may be why they aren't doing anything for the bleeding and say that only a transplant will save him now. I'm probably just as confused as you are, because I'm only getting updates from someone who is fuzzy headed.

Mae, I'm sorry to hear about your brother. I know how difficult it is. I was the lucky one that got away from all that. Our brother was also taking Hydrocodone and Tylenol like it was candy. I will try to contact the charge nurse and/or social worker and see what can be done. My husband talked to a home hospice nurse today that said if the bleeding is from his liver, it's usually only 24-48 hours after the bleeding starts before they pass. Needless to say, I'm a mess today. It's been right at 48 hours since they found the bleeding. Unfortunately, it will probably be my mother that gets proxy and she's just about as confused as he is.

Thanks everyone for the support.
Hugs

Post Edited By Moderator (hep93) : 6/11/2013 4:55:29 PM (GMT-6)

http://www.nlm.nih.gov/medlineplus/ency/article/000268.htm

 The above link may help shed some light on what's going on with him internally . Without yourself or someone who isn't in correct mind set actually being there it's going to be nothing but worrisome for you . Due to HIPAA laws the doctors can't tell you much of anything over the phone . Someone is gonna have to be there either now or when he passes away so things can be taken care of . I think that is about the only choice you will have in this . It's sad you are stuck in this position and my heart goes out to you and the family .

 Can you find a family member who can arm themselves with the proper questions to ask his doctors or care providers ? If so , Get together a list of things you need to know . We can give you pertinent info and point you in the proper channels but someone has to be there advocating .

 A. Ziffle 

I'm sure others will add to the question list but here's my suggestion :
1. Was a Liver biopsy done ? What was the result ?
2. Has an endoscopy done recently ? What was the result ?
3. Has imaging been done ? What was the result ?
4. Can I get copies of his blood test reports ?
5. What type of medications are you prescribing ?
6. How are his kidneys doing ?
7. Is he being seen by a G.I or a Hepatologist ?
8. Where is the closest Hepatologist located ?
9. I want every copy of each medical report to date .

I cannot stress enugh the importance of keeping paperwork. During his sickness he will be in and out of hospitals , Doctor's offices and etc. and paperwork will be faxed primarily between these people . People can lose paperwork and machines have failed . Having a copy in your own hand can save his life quite possibly . I have had to bring copies of my own records in at least 5 times to compensate for these errors . It's what may seem to be little details that lead to serious consequences .

Ziff

Post Edited By Moderator (hep93) : 6/11/2013 5:00:28 PM (GMT-6)