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Alcoholic Liver Disease is hard to understand...

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Posted 8/21/2014 2:28 AM (GMT 0)
Hi there, Ok here we go.. my husband had been diagnosed with cirrhosis of the liver 7 years ago and had totally stopped drinking after being hospitalized. He remained sober for 6 years and was doing great!!!! Last Christmas he started drinking again and our children who are now adults and myself have asked him to stop repeatedly only to have our cries fall on deaf ears. This is dad, this is hubby, this is our guy who we love!!! Just last week I noticed a huge change in him, his eyes are now bright yellow, his skin in yellow/orange and he wasnt the sharp tongued outspoken man anymore but soft spoken and confused. I finally convinced him to seek help taking him to the hospital where he stayed for 4 days and was released last Monday. His specialist and doctors were not happy at what they found. This is now his condition, Jaundice, Alcoholic hepatitis, cirrhosis of the liver. He has it all. The specialist that had been taking care of him on his first bout 7 years ago was shocked as he thought he would never see my husband again, being he was doing so wonderful! When we walked into the room this doctor was floored to see the shape and colour of my husband.. even his scalp is yellow! Ok my question is what can be done, if anything to make hubby be with us a little longer. He has NOT touched a drop in two weeks now as they have all told him to stop or it would kill him. Hes scared as am I and our kids. is there any chance? Can someone PLEASE tell me life expectancy for such a terrible disease? I love my husband and do not want him to suffer. he does everyday and usually around supper time with stomach aches and pains. Oh yes he is also diabetic , insulin. He has mood swings also that are ususlly directed at me or our oldest boy which hurts. Theres just so much going on I cannot concentrate at work and I must to keep a roof over our heads and bills paid. Please help and thank you to those who do. Im at my wits end and cannot cry anymore. XOXO to everyone.

Moderator edited your heading so more member can offer support. ML

Post Edited By Moderator (MamaLama) : 8/26/2014 6:22:20 PM (GMT-6)

Posted 8/21/2014 3:12 AM (GMT 0)
Life my heart breaks to hear this. I am so sorry. I don't know a lot about life expectancy for your husband's situation but I do know that he will surely die if he drinks more. I stopped drinking alcohol the day I found out I had cirrhosis. It's not easy but there are good support groups out there that he might want to check out. He is lucky to have a loving wife and children. Someone with more experience in your situation will jump on here soon, I just had to respond.
Wishing you peace,
Plant
Posted 8/21/2014 3:17 AM (GMT 0)
Thank you for listening Plant! I wish you good health and happiness. Thank you for your kind words.
Posted 8/21/2014 3:46 AM (GMT 0)
Of course. Please keep us posted- we are all in this together.
Posted 8/21/2014 3:51 AM (GMT 0)
For most of us it takes being hospitalized with worse issues than your husband. I am also a Alcoholic diagnosed with end stage liver disease. You/he may have saved a good portion of his liver from further damage by quitting as quickly as he did. There is no set limit of "how long anyone has" who suffers from this disease. Unless hospice gets involved. I have a estimated 15 percent of liver function due to Cirrhosis. I was told years ago I had 3 months at best survivability. We all react differently to this disease but as long as one continues to fight it your chances are greatly increased of getting a normal life back through transplant or healthier living.

Depending on his situation Lactulose may be needed to clear his mental confusion, It's often taken in combination with Xifaxin. He should stay away from salt and monitor his weight regularly to see if he's retaining fluid which can be a huge problem in most cases. Sobriety is a must. Most if not all transplant centers require a minimum of 6 months documented sobriety before they will even consider listing someone for transplant when alcohol or addiction is the cause. Find a Hepatologist and verify program requirements and get the ball rolling.
Posted 8/21/2014 3:55 AM (GMT 0)
livelife -

As Plant has said, drinking only leads to one inevitable endpoint and it won't be a pleasant ride, if this is what he so chooses. But if he's interested in life, then start documenting his sobriety immediately and using the various alcohol/addiction support groups can help a great deal in this if he'll allow it. It's the only chance he'll have and there's a minimum 6 month abstinence requirement before even starting to think about a liver transplant.

Since he has alcoholic hepatitis imposed on top of cirrhosis, his liver is really taking a beating right now so healing and getting to some type of stable condition will be his and your top priority. Did they mention whether or not that he's still compensated or is he also starting to show signs of ascites/edema/etc? The jaundice may start to ease up as his alcoholic hepatitis gets resolved but the damage has been done.

You're at the right place though and this site it filled with great people with lots of experience. I'm fairly new myself and have ESLD too. Definitely use the resources available here!
Posted 8/21/2014 1:15 PM (GMT 0)
Hi everyone, Yes my husband has been told that he has 5-10% estimated liver function left. He is still quite jaundice and this morning in a bad mood. I do know that the mood swings is a part of the disease. It can be hard sometimes though as he can get very verbally abusive , never hitting though!!!! I am documenting everything that I notice. It differs each day. He was also on Lactose to make him go to the washroom but he goes so many times without Lactose it was hurting him. My husband on a regular day will go to the washroom at least 10 times. He was so uncomfortable taking lactose as he wasn't able to sit and going every 5 minutes. He was not getting sleep either. Bblbt- Ascites/edema please explain what exactly these are so I can see if he does have them?? There are issues I am not aware of, but I am trying to research as much as I can. I know his liver enzymes are 220 and the doctors told us in the hospital they should be 20 or under!! Anyway my friends I thank you for your comments and all suggestions. All the bast to everyone! XO
Posted 8/21/2014 3:22 PM (GMT 0)
livelife,
Welcome to the hep forum. We are those with liver disease of all sorts, as well as those who love them.

In the top posts you will find a sticky that says "Hepatitis Resources". There you will find the answer to many questions you have about liver disease and conditions. There is quite a learning curve with liver disease.

What medications does your husband take daily? If you have the latest labs, we can help you calculate his MELD score. I suggest you get copies of his medical records, labs and results of scans. Did the doctors discuss getting documented sobriety and seeking a transplant listing? I don't know where you live, but it would be a great idea to see a hepatologist with a transplant center. Big Hugs
Posted 8/21/2014 3:32 PM (GMT 0)
I want to add...

Since your husband was RX'd lactulose, he likely has HE. This documentary is about HE that will show you some personal stories of caregiver's and sufferer's.

Xifaxan is the other medication used with lactulose. HE can lead to more serious issues than a bad temper. Big Hugs


www.hesback.com/
Posted 8/21/2014 3:43 PM (GMT 0)
livelife -

Just a short list of things for you to pay attention for when talking with the doctors. And, as themiz mentioned, the resources will help your knowledge base a great deal too.

In particular, numbers that we need to help us understand where your husband is wrt his liver disease and how to help you: alt, ast, alp, bilirubin, inr, creatinine, bun ... no hurry, again it just helps us.

The ascites/edema I mentioned refers to the large amounts of water that accumulates in liver disease patients. The ascites accumulates in the belly and he will tend to look pregnant. The edema will accumulate in his lower body, legs and feet. It can be quite swollen to the point of being "pitted" which simply means, if you push your finger into his flesh, an indentation remains after you stop pressing down. Both of these are caused by advanced, decompensated, end-stage liver disease (ESLD) ... in particular, portal hypertension (PHT).

I have all of these manifestations as many others do in this forum, so we have direct knowledge to help you with. Also know that you and your husband are not alone in this, we are living it everyday as well. Please keep us informed.

Btw, most hospital's have a website access for all their patients. You can get into this to see all of his records anytime you'd like. And you won't have to bother your husband's doctors or nurses all the time. Be sure to keep a copy of everything, absolutely everything!

Post Edited (bblbt) : 8/21/2014 9:55:45 AM (GMT-6)

Posted 8/22/2014 12:54 AM (GMT 0)
Thank you to everyone who has answered my cries! I now know I need to do more extensive research and with your help I will learn to understand . Bless each and everyone one of you. I'm extremely thankful for this forum and all on it. XO
Posted 8/22/2014 2:19 AM (GMT 0)
Tonight my hubby is ok, the mood swing has subsided and he is a sleep. I have noticed that the jaundice has darkened and he is weak again. I have just finished watching the video on HE and yes this definitely is my husband . Forgetful at times, confused at times, slurred speech at times, not always but enough. He is depressed and often get instant headaches that come on fast and last about 30 mins to an hour. He goes to lie down as he needs to close his eyes.. this helps. Every evening around 3-4 pm he starts with abdomen pains. He eats a good breakfast and lunch but can not get dinner into him. He is getting thin also. Skin and eyes are. so yellow. I look at him and want to cry, I feel so helpless!! I know hes suffering and theres nothing I can do to make it go away/ As Im typing this he is on the couch across from me. We just bought a new bed and he now is complaining that the mattress hurts his bones so hes sleeping on the couch. hugs to all
Posted 8/22/2014 3:35 PM (GMT 0)
livelife,

There is something you can do! But he must stay sober or nothing will work.

Find out what medications your husband taking, and hopefully, he is taking meds for HE. With HE, he may not be able to take his meds without your assistance because he will have problems knowing he is compromised.

Themister had a seizure due to HE in January, and I nearly lost him. He was sleeping 16-18 hours per day, could not work a remote, make coffee, not know if he had showered. He felt aches and pains that seemed like arthritis. He felt stiff and could barely turn over. This requires more lactulose, until he the toxins are eliminated via the bowels. It is not fun, but beats days in the hospital with lactulose rectally an through nasal tubes. That is where we end up if we can not control it. You want to get his HE under control, for his sake, and yours.

My husband is doing well and stable. He is on a transplant list, takes his meds, but still has breakthrough times of HE. And themister can not tell it is happening.

HE leads to coma, if untreated. And people die. Since he is RX'd Lactulose, that must get into him, even though unpleasant.

Can you give us a first name to call him by?

Here are the medications that make HE worse. Ambien, benzo's, and pain meds. Some anti-depressants. There are more, but those are the meds that are known to be troublesome. Take a look at his meds and we can discuss this with you.

My husband has had HE since TIPS, and his best dosage for that is:

Lactulose at 30ml 4 times per day
Xifaxan 550, 2 times per day for HE.

IF themister gets HE even at that dose, he can Not tell he is in trouble :( . I notice! If we get an extra dose or two, he usually will clear right up. You can not overdose on Lactulose.

Be engaged and involved and let us hear from you. Big Hugs
Posted 8/22/2014 7:02 PM (GMT 0)
Hi livelife,

I am so sorry that your husband is ill with liver disease. As the others have already said...no more alcohol. That is the single most important thing he can do for his health.

My husband was dx almost 4 years ago with cirrhosis due to alcohol. He was able to stop drinking and all his labs returned to normal. That was about 9 months in. Since then, he has had many slips, and two relapses. With the relapses his labs got bad. He has had a good recovery now for the last few months and again, his labs have returned to normal range.

If your husband can attend AA it can be of great help to him. Al Anon for yourself and the family can be very helpful. I have been attending Al Anon and it has helped with my worry and anger quite a bit.

This is a great forum. Please keep posting.

Take care.

Emma
Posted 8/23/2014 1:20 AM (GMT 0)
Hi everyone, ok these are the meds my husband takes Apo-Nadol 40mg, Teva-Semide 40mg, Apo-Rabeprazole 20mg. He is to start new ones when these are finished and they are Apo-Pantoprazole 40mg and Apo-Fluosemide 40mg and he also takes 30mg Lactose twice daily and is on Insulin twice daily. Today was not a bad day as he told me it was the first day since he came home from the hospital that he never had stomach pains! He actually ate dinner! I must work to keep things covered and food on the table so I cant be with him always. I wish I could!! Hes now in bed trying to sleep but he complains that his sides get sore and back hurts when he lies flat. He sleeps on the couch often now. We go to our family dr Sept 2nd for follow up bloodwork and ultrasound so I will let you all know the outcome. By the way my husbands name is Don.Thanks everyone and take care.
Posted 8/23/2014 2:14 AM (GMT 0)
Well again Don is awake as the new bed we just bought is hurting his sides. Hes now on the couch again. Hes so tired! Good night everyone.
Posted 8/23/2014 2:47 AM (GMT 0)
Glad Don had a better day. Thanks for the med update and it does not look like anything that would mess with HE, so this is good news.

Have you tried something for the bed? Having a new bed, but resorting to an "egg crate" topper may help?

Let us know how things go with the US and labs. Ask if you guys can get copies faxed to you. You need to sign something. Keeping copies is a really good idea. Hang in there, Big Hugs
Posted 8/24/2014 1:20 AM (GMT 0)
themiz, I surely will let you all know how things go. Tonight Don actually had a little dinner with me at the table which was very nice. we had a conversation and got to talk about our day. Hope theres many more to come! Take care.
Posted 8/27/2014 12:30 AM (GMT 0)
LL, I've been thinking about your tonight.

How it is so hard for the loved ones of those affected with liver disease too...it is not only the patient who is going through this...it is the whole family.

Things had been hard at our house for years....with Alcoholic Liver disease, Hep C, and Liver Cancer. We called that the HAT TRICK...if you do hockey jokes.

Mike has been sober since September 27, 2010...so we are coming up on 4 years...that is a more important day than his transplant day, May 1, 2011....because he would never have qualified with sobriety! It is his first gift to himself....a gift of life.

Of course, he traded lack of sobriety for HE quickly and it is amazing how similar those two things can be...not so much the happy rowdy things...but, you maybe get the idea.

It was a roller coaster for a long time. I am hoping today has been a good one.

Hugs,
Mama Lama
Posted 8/28/2014 1:32 AM (GMT 0)
Hi MamaLama! Thank you for your thoughts and kind words. I have been telling Don for years that everyday with him is like an adventure as you never know what to expect and then we laugh. Today was ok as he only ate breakfast and lunch but couldn't stomach dinner. He was standing in the dining room tonight talking to our daughter and myself and he sucked in his stomach just joking around and his jeans fell right down to his knees. Hes lost so much weight over the last while its really starting to show on him. His clothes mostly the pants are now to big. Dons eyes are still yellow but not as yellow as they were when he was in the hospital a few weeks ago. His skin and scalp are still yellow though. I have notice every now and then that he looks confused or has lost his train of thought. It frustrates him to say the least. The pains in his stomach have not been so severe lately thank goodness. We go see our family dr on Sept 2 and following up with bloodwork and ultrasounds that day too. We can only pray for the best!! I have noticed since Don got sick he has lost his strength mostly in the legs. Trying to go up stairs is a huge chore and it takes a lot out of him. Don was an extremely strong man weighing in at 180 but now he is 150 and has trouble lifting his legs when doing stairs, almost stumbling at times. He loses his breath to and has to stop. Things like this breaks my heart, as I remember the strong, physically fit guy who would run circles around us all. Like I said breaks my heart. Anyway my friend. when we get the results back I will surely let you know. Until next time.. take care XO
Posted 8/28/2014 2:44 AM (GMT 0)
Thanks for the update. Glad to hear Don feels better than he did a few days ago. Oh, one thing about the weight and helping with eating. Making shakes or supplementing with Ensure to replace meals will work very well with end stage liver disease. Themister drinks at least one each day. I do hope you get some better blood results, and please know we are here for you when you need us. Big Hugs
Posted 9/6/2014 2:58 AM (GMT 0)
Hello everyone, So Don had his appt on Monday and we are waiting for the results to come back, blood work and ultrasound. He is feeling better the last few days and the yellow in the eyes is now almost back to normal. No drinking for almost 1 month so this is a good thing!!!! Our family dr told us that when in the hospital they found gall stones LOTS of them and kidney stone too. No one had told us in the hospital???? Anyway just updating you on the stats, take care everyone.
Posted 9/6/2014 4:58 AM (GMT 0)
LL, Glad to hear Don is at the 1 month mark! That is great. As the months go by you will see what a difference it can be. My father quit right after he went in the hospital last year. We thought we were going to lose him. Once he stopped drinking he lived another full year feeling pretty well and overall living normally until recently when things started going bad again.

I am sure your husband with your help can get himself to the level of bouncing back enough to possibly get the help he needs. Look into all options and everything you can do.

Make sure you let us know the results when you get them. Hope tomorrow is a good day for you both!
Posted 9/12/2014 1:40 AM (GMT 0)
Lostson, Thank you for your reply it is much appreciated. Don is doing well at the moment and not drinking so he looks good. We did not get a call from the doctors stating Dons results so I guess things are going the right way otherwise my family dr would have contacted us. My concern is and has been what life expectancy is for Don. No one seems to know as I guess its different for everyone. I wish you and your family good health, and all the best.
Kathy
Posted 9/12/2014 2:30 AM (GMT 0)
Never assume "things are going the right way," until you hear those words from your doc. Call and ask. Some docs are too busy to get back to you. Or a nurse forgets to call. Don't let this get away from you.
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