Stage Four Alcoholic Cirrhosis of the Liver - new to forum

sleecon,
Welcome to Healing Well. I am sorry that your husband and ill, and that you had to find us. But glad that you did find us. There are many knowledgeable people here, patients and caregivers. Liver disease from all types of causes.
My husband also has cirrhosis due to alcohol. He was dx almost 2 years ago. He stopped drinking at dx, but has had some slips in the past year. Working on sobriety day by day.
When he was first sick he was referred to a GI and told that the best thing he could do for his health was to stop drinking.
He was jaundiced and that has mostly gone away. His bilirubin is just a little over normal now. All his other symptoms have gone away --- dry heaves every morning, cold, sleepy at inappropriate times, messed up sleep patterns, bloody noses that took a long time to stop. And the heaves, sleep issues, and bloody noses went away immediately. The jaundice and tired, cold took several months to resolve.
At first I went to every doctor appt with him, now I don't.
Keep posting, keep asking questions. There will always be someone along to answer.

Emma

Hi Sleecon,

Another welcome aboard the Liver Disease Roller Coaster.

This is no fun for the patient and no fun for the caregivers.

Our story is very much like yours. Alcoholic cirrhosis (but he has Hep C also), End Stage, every symptom in the book. We switched from the local GI doc to a Hepatologiest at a major medical center with a transplant progam and the regime got "serious." They prescribed the right meds, they evaluated, tested, explained.

Mike quit drinking in September 2010, joined AA, had his PCP do an ethanol blood test weekly to demonstrate there was no alcohol...not from beer, not from gin, not from mouthwash!!! The doc promised him in October 2010 he would not see Christmas if he continued drinking. And I believe that would have been true. Mike's urine was coke colored, he couldn't eat, he slept all the time and his mental status was awful...cranky, mean, argumentative, etc. And for sure NO DRIVING. He was a maniac in the car. He hated that, disagreed and argued with me constantly. When he ralized that I would not drive with him, that I would meet him wherever, he realized it was serious and gave up his car keys.

He was hospitalized about once a month during this pre transplant time...for kidney failure, sepsis (almost died),pancreatitis, crazy electrolytes, kidney failure again. They'd pump him full of albumin or potassium or whatever was mixed up at the moment, or IV antibiotics. If he was still with the GI doc during this time, he would have died in a community hospital I amsure of it.

Mike met his 6 months sobriety at the same moment they found a heptocellular carcinoma (small) in his liver. They wanted to treat it, but it was very deep and they couldn't get the ultra sound to work in there so they gave him some extra MELD points and he jumped to the top of the trasplant list.

We have members with alcholic cirrhosis who have gotten sober and regained some of their strength and avoided transplantation...for now.

And we have members who have decided against transplantation as a treatment option. Please know that at End Stage, there is no cure bar transplantation. The patient will die in time.

But with meds and sobriety and good diet there is likely time for you husband.

Good luck. Post often, there are many of us who have been in your shoes and in his!

Mama Lama from Florida

Hello all and THANK YOU for the responses. I looked up the GI again and have found that he is Board Certified in Gastroenterology, Hepatology and Internal Medicine. I have read the the Caregivers Threads as well as the Hep resources that this site provides. Great information.

We have a re-visit today (the 3rd) since the dianosis. This is also our 3rd bloodwork revisit. After the 2nd fluid removal and with the no-salt diet, he is barely retaining any fluid. In fact, now it is very apparent on just how thin he is.

He has stopped drinking, 8 weeks. He absolutely will NOT attend AA or go into a rehab unless ordered by a doctor. The GI stated if he gets on a transplant list, they would order him to rehab so they could monitor the alcohol intake. I've been through his quitting drinking several times and watched the pain and suffering. He drinks liquids like crazy now and yes, has become quite the candy junkie!

I will ask about the ammonia levels. The irritability, cranky, mean-ness has been going on for several months and I tried telling him his personality was changing right in front of me but of course I was wrong....this is still going on and the eggshells beneath my feet are starting to crumble!!

I am now better prepared to visit the doctor today thanks to your comments. Yes, he is a Veteran. Another good tip.

To another day.

Sharon

Sharon,
apply for help through the VA. Unless you are financially well off, they will help him. He can get the alcohol counseling thru them, medications all of it. They will even pay for you or someone else to take care of him. They provide respite care, counseling for the caregiver . . you have to get to know the VA . . I will help you. Nothing happens overnite with the VA, so apply now, go to the nearest facility and apply in person. You can also go online www.va.gov and get alot of information.
What area of the counry are you in? my email is in my profile, end me an email and I will help you.

Debbie

The details of your husband's situation and mine are very similar , I had those exact same problems he experienced . His wanting to move forward and get healthy can make a world of difference in this situation .

I dropped weight so rapidly that people I knew for years didn't recognize me . I suffered from severe Ascites and had to have paracentesis done very often , I looked like a pregnant skeleton .
Diet and learning how to discipline yourself with salt intake was a major hurdle for me , I always salted my food prior to tasting it for the most part . I didn't struggle with giving up the booze nearly as bad as I did the diet . Read food labels while shopping and look at sodium levels , You'll be surprised at how much the prepared stuff is salted . Experiment with salt substitutes until you find one that works to his taste .

Building back wasted muscle is hard if you don't find the food flavorful , Again salt substitutes may be needed to increase his appetite . Protein shakes are good for putting weight back on .
It took almost a year of training myself on diet and exercise coupled with TIPS surgery to regain normalcy in my appearance , Slow and painful to say the least . Exercise even the minimum is great to keep the mind off the stress this disease can bring with it . I got a comfortable office type chair and put it in my backyard workshop and tinkered with things , When I felt my ankles swelling I put my feet up on my work bench and read books on home repairs or such . Don't let him over do something , It's easy to get carried away and convince yourself of going too far . Sunlight is a great source of vitamin C so gardening became one of my choice things to do , Again found a roll around seat thing to work from in the yard . It takes imagination to work around this disease and a ton of Patience but it can be done .

A. Ziffle

The TIPS procedure is done in the event the fluid retention can not be controlled by medications and has nothing to do with endoscopy , Hopefully he wont need the TIPS . I forgot to mention that in my last post .

The doctors may be discussing banding if he's experiencing bleeding also , Endoscopy is basically them checking his internals with a telescopic tool . You may want to leave that part out while relaying this message to your husband . ( LOL )

Yeah , That salt thing was a pain but now I order food at restaurants and have actually had to reorder a meal for it being too salty tasting . Never thought that would happen a few years ago .


A. Ziffle ( Rick )

Post Edited (A.Ziffle) : 8/15/2012 3:33:40 PM (GMT-6)

Sleecon,
Hello, and welcome to this forum and Liver Disease. :( Sorry you have to be here, but....it is what it is. My hubby has ESLD from Hep C and Feb 22, 2011, was given 6 months to live, unless he had a transplant. He chose to not be evaluated for a transplant and we are one and 1/2 years down the road from his diagnosis. He has been real bad...and in a nursing home...and now home doing better. The nursing home diet was processed food and no fresh fruits and veggies..lots of salt...and although it gave me a break as a caregiver and he liked socializing with the staff, it was not very healthy for him.

Once I brought him home a month ago, his diet is totally different. (He was a diabetic, so we knew how to eat pretty healthy before he got so sick.) Locally grown veggies, raw honey, smoothies with fruit and yogurt, etc and virtually no salt. I have used sage, rosemary, and tyme (time...we laugh about giving him a "little more time") to season foods. Also lemon, coconut and all the baking flavors...orange peel, lime twist, cherry juice. This change has helped his overall condition so much, we have been able to cut his meds down by 1/2. I will be asking his Dr. to cut down his painkiller patch, as I think the nursing home wanted it strong, so they didn't have to deal with him.

It is not easy taking care of him at home, but I, like you, am strong...and am moving ahead. We prepared for his death over a year ago...and it just didn't happen. Now we work on having a sense of humor about life and living out what time he has the best we can. He has in the past, been disagreeable and difficult, but we have worked through that...but I cried a lot.)

Recently his Best Friend came to help me for awhile and gave him a "Heart to heart" talk and told him to get off the pitty pot, get out of bed and help me more...or he will find himself without a wife. BF told him he has time left in his life to do things and BF will take him on a trip (hubby loves to travel), but BF is not showering him and "wiping his b..t." It made a BIG difference, hubby is showering himself every other day, up walking every day, getting ME a cup of coffee now and then. Thank God for BF..the Guy to Guy talk worked wonders. His BF told me that I need to ask Doc to cut down on the narcotics, so will do that. He also said to quit making him feel helpless...require him to do more things himself. So I am getting used to that. (sometimes this gives us a much needed laugh...like when hubby put bag with broken light bulb in refrigerator.)

Sleecon,,,,this is a journey unlike any other in life...full of ups and downs, but I and my hubby are learning lots of new things about each other...ourselves, etc. Hope some of this is helpful to you. Sorry it is so long, sometimes it helps just to be share here on HW. Hard for folks not going through this to understand. Welcome.. post often. Share ideas with us about salt substites...hot sauce, etc.

Post Edited (Angie1953) : 8/19/2012 11:47:23 AM (GMT-6)

Hello all,

It's been several days since my last post.  Oddly, life is beginning to return to normal (sort of).  My husband's last doctor visit was good.  The doctor feels he has found the right dosage of medication since we did not have to have a tummy tap again.  In fact, since the 2nd tummy tap, not much has changed.  Dave lost a lot of weight after the 2nd paracenthesis and has remained at that weight for two+ weeks.  He continues with his no-salt diet and of course no alcohol.  The sugar cravings are less, and his color has returned in the past week.  At the last doc visit the doc made the comment "you are responding to treatment better than I anticipated"....the sleepless nights are gone and he is beginning to be active again.  An endoscopy is scheduled for 9/18.  The next doc visit is one month apart from the last.  Dave has stated that he was going to question why he needed to go to the doctor again (this is how I know he is returning back to being him)...as he feels he is feeling so much better so no need to keep seeing the doctor. 

I am a bit shocked on how well he is doing compared to how sick he was 1-2 months ago.  Is this normal that he could be so much better so quickly?  After all I read about this disease now that the liver is damaged will he continue to experience other issues/symptoms that appear randomly?

Thanks for your time and comments.

Sharon

Sharon,
I agree with Connie about the attitude thing. That is how my husband is. His labs are stable and he is doing well, so in the last year (which is 2nd year of his illness) he thinks it has been okay to have a drink now and then. This is a problem between the two of us. We are working through it.
I have no answers, just wanted to chime in that what Connie mentions is very valid.

Emma

Hello Sleecon , Your husband has to understand that this is not something that just goes away . I stayed horribly sick with all yours husbands ailments for a year before I got a TIPS to reduce my out of control ascites . I looked like a pregnant skeleton .

After your liver reaches a tipping point there is no other option than transplant , Well .... Maybe death but I kinda like being this side of the dirt so for me no other option . I've never been one for a doctors office myself and can understand his desire to stay away from it , Unfortunately I'm afraid he will have to deal with it as best he can because it will happen . He don't have to like it but it may be where he's headed ...... frequently . Not trying to scare you but want to inform you/him so you'll know what to expect .

Connie has suggested he see a Hepatologist and I agree 100% , It's not so much that a G.I isn't good at what he does but when dealing with vital organs a specialist is the way to go . You wouldn't want a tile guy doing your electrical work in your house would you ? Sure the tile guy knows about electrical because he's been working alongside electricians for years but do you want him wiring your house ? Same principal here only your house doesn't burn down , You loose a husband .

The medications he is taking are common with fluid retention but tend to be really hard on the liver and kidneys , It's great for what it does but eventually if he cant get the dosages lowered or stops them completely they will drag him down further . They didn't work for me but there are folks who respond to them well and get taken off them completely , It's a wait and see type thing . The low sodium diet will reduce the ascites problems as you mentioned . Glad to see he's handling that well , I didn't , It was harder than giving up the bottle for me but now it's second nature . I have taken a combination of vitamins since this whole thing started , B-complex ( Energy ) , Calcium supplement , Vitamin C and a light multivitamin . This combined with lactulose ( encephalopathy ) , Xifaxin ( Encephalopathy ) , Lexapro ( Depression ) and occasionally Ambien ( Sleep issues ) have worked good for me so far since the TIPS surgery .

It's been four years since I was diagnosed and my paperwork shows that I currently have around 15% liver function , I haven't had any bad episodes for 2-1/2 years now but still see a G.I doctor , Internal Medicine Doctor and my Hepatologist regularly . I am in the area where the TIPS begins to malfunction typically ( 4 years ) so my situation is far from over , but I am alive and somewhat healthy today and thats far more than I expected years ago . It was hard on me mentally for along time , Knowing I have this hanging over my head . I finally accepted that what ever happens will happen , You take what you have and move on as best you can . I see it as a cleansing of sorts now , almost like my life has been put on reset and I start everyday like a blind man with 15 minutes of sight .

Tell him to get on with life , He may just be one of the lucky ones like me . Do what needs to be done today and do it again tomorrow until he no longer see's a point in worrying about the future , He has today and thats a gift many in his shoes don't have .


A. Ziffle

Hi, Santa, and welcome to the forum! It's always good to read about someone who made the decision to stop drinking and is now doing well. Congratulations! I would like to invite you to start your own thread (Click on New Topic instead of Reply) to introduce yourself and tell your story. You picked up on an old thread (a year since anyone posted on it), and your post could well be overlooked.

Hugs,
Connie

Survivor

Welcome to the forum.

Yours is a tale well told...those with alcoholic liver disease who cure their ways before the liver is completely decompensated, can have a second chance at life.

If you plan to become regular on our site, please cut and paste your story into a New Topic.  You have commented on an old thread and your remarks may not be seen by as many who might benefit.

Call it something like the old thread...like Coming back from Alcoholic Liver Disease.

Others have done well also.  But be cautious not to ignore symptoms if they come again.  It is easy to let your guard down and think just one won't hurt!  do you attend AA?  Many do and have good luck.

My partner, Mike, had Alcoholic Liver Disease, Hep C, and HCC (liver cancer).  He needed a transplant and is now sober 3 years and 2 years post transplant.

Best,

Mama Lama