husband with cirrhosis/what should i expect?

My husband was hospitalized for a week. The first couple days a doctor said he had cirrhosis, another that he did not, then he has 40% liver damage, then some scarring on his liver. I thought scarring was cirrhosis. I've been reading about liver damage and cirrhosis online. It's been 2 weeks since he's been outta the hospital. He continues to lose weight (if looks like.) He has so much water retention in his legs and feet, still has jaundice but not as bad. He has stopped drinking alcohol. This has taken over his body so fast. He is only 31 years old.

After the hospital he had a followup with his doctor. She says he has cirrhosis. He has another appointment with a GI doctor, but from what i read i am somewhat confused on what this appointment is for, just because I've been reading posts that GI docs are not too familiar with the liver? I have lots of questions and am hoping that someone can help me with some answers. I'm so stressed out. Have three children, the smallest 1 years old. I have now had to cook my husband separate low-sodium meals plus he is diabetic!

What questions should I ask the GI when going to his appointment? Is there a chance this can get better or is this just the beginning of the worst? i don't wanna think about it, but does anyone have info on getting life insurance for someone with cirrhosis? We just buried my husband's father and if something happened to him idk how i could afford it. Also when he goes to his follow up with his doctor. what other questions should i am that we need to know?

Post Edited By Moderator (hep93) : 10/13/2013 7:56:02 PM (GMT-6)

Hello, Vel, and welcome to the forum. It appears that your husband's liver disease is caused by abuse of alcohol over a period of time. If he doesn't have cirrhosis, he can turn this situation around in time by continuing to abstain from alcohol and eating a healthful diet (no beef, fresh or frozen fruits and veggies.) Low sodium.

Scarring can be fibrosis, not cirrhosis, but sometimes they are used interchangeably. I agree that your husband should be cared for by a hepatologist. Has he had a liver biopsy yet? That is the sure way to tell the extent of the damage and if he has cirrhosis or not.

The good news is that he has youth on his side. I really doubt that he is going to die anytime soon. But it is mandatory that he not drink alcohol--at all. No cooking wine, not a beer, not vanilla extract or cough syrup or mouthwash with alcohol. Nada. Only in this way can he give himself the chance to recover.

Even if he has cirrhosis, he can prevent it from progressing by following the above suggestions.

Hugs,
Connie

That doctor wouldn't know for sure how much damage he had without a biopsy.

Hugs,
Connie

Hello and welcome. I agree with Barry about seeing a Hepatologist. I am a recovering alcoholic that's been sober for 5 years now. I, too, have Cirrhosis. I had a very rough time with fluid issues and had to have paracentesis done on a regular basis to remove fluid from my abdomen. Of course, my legs had developed edema also and fluid retention pills didn't work. My prognosis from the onset was 3 months probability for survival. My liver was, and is, pretty much shot from the cirrhosis.

It took a year before I finally got an appointment with a Hepatologist. The GI doctor I was seeing had me convinced he knew what he was doing and came highly recommended. That mistake almost cost me my life and put me through some unneeded misery. I went from my normal weight of 215 lbs to 160 in a few months. I couldn't eat anything--it all made me nauseated. The body tends to go into self preservation mode when this happens and robs your muscle tissue eventually to get the nourishment it needs. You get very weak and fragile.

He needs to start drinking Ensure or other nutrient rich drinks to feed his body. No salt is best but a low-salt diet must be adhered to. When shopping for food you will have to become an educated consumer and look for sodium content in everything. Just because it says LOW SODIUM doesn't mean diddly squat. Have him keep his feet elevated to keep his legs from bothering him and maybe look into surgical hose. Kinda like women's knee high stockings but made for this purpose.

Don't get yourself all worked up yet until you know what you're dealing with for sure. Hopefully, this is his liver giving him a warning shot of whats to come if he doesn't stay sober. If you ever need to ask a question feel free to do so. Someone is inevitably around here. We have quite a few folks in our little community. Welcome aboard.

Ziff

Post Edited By Moderator (hep93) : 10/13/2013 9:20:54 PM (GMT-6)

One way to avoid salt is to not eat anything that's fast food, comes from a box or can and check the ingredient list on all your food. Bread has salt in it, plus you have to look at the portion size. A slice of bread may not look like it has much salt, but make a sandwich and you've doubled the dose. Even many so called "low salt" items have more salt than one needs.

I recommend you raise a question to your husbands doctor regarding "all blood works came back negative"... and receive a detailed explanation on your husbands bloodwork result. Advanced liver disease should have elevated liver enzymes and other out of range results.

It's not that sodium is harmful to the liver, but that it causes fluid retention and a sick liver cannot manage the excess fluid, leading to edema and contributing to ascites.

If his liver enzymes were normal, which enzymes were high? A WBC is not an enzyme.

It's unlikely that he has cirrhosis if his liver enzymes are normal, but it does happen. My labs never reflect what is really going on in my body, except for kidney function which is always correct. Liver enzymes and bili--not so much. I am not questioning you, but the doctors who told these things to you.

Go ahead and see the GI doc, but then ask for a referral to a hepatologist. If he does have a liver biopsy, it should be done by an interventional radiologist using ultrasound.

Hugs,
Connie

Thank you everyone for replying to my post,i got much needed information.