Hi, I just came across this site tonight and have read some of your stories. I am so sorry. I decided to join because my husband has been a heavy drinker for most of his adult life, he is now 63. Three months ago his stomach started to grow, he made an appointment with a GI doctor last week and had an ultrasound done to find he had fluid in his abdomen. He’s had bad itching for years and had gone to many doctors only for them to send him home with no diagnosis. Today I took him for a paracentesis, they drained 7.7 liters. He feels so much better, yesterday he had more blood work primarily for his liver. Two years ago he was hospitalized for wernyke encephalitis, it was horrible to see my husband in this mental state and was petrified he’d never recover but he did. Unfortunately this was not enough to get him to stop drinking. When his GI told him last week when they met to go over the ultrasound and fluid in his abdomen that he needs to stop drinking immediately did not have any affect on him. So my question is, where do we go from here? What’s the next step?
Ascites?: Hi, I just came across this... - British Liver Trust
Ascites?
Hello Sunshine and welcome here.
I am sorry to hear about the situation that you and your husband find yourself. I had an alcohol related liver transplant and am familiar with the symptoms that you are talking about. It’s a very difficult illness to deal with and you have the added problems with Heptatic Encephalopathy. If you aren’t already, it would be advisable for you to attend your husband’s appointments, this will help you understand what is going on, a notepad would certainly help. They would have made it clear that he needs to stop drinking, otherwise his life expectancy will be limited. But it needs to be tapered off, over a period of about 30 days. It is dangerous to just suddenly stop, it should be a gradual reduction.
Please ask any questions that you may have, there is a wealth of experience and support here.
Best wishes moving forward,
Mark
Thank you for responding, Mark. Unfortunately with Covid spouses can’t go into the appointment. And unfortunately I do not see my husband stop drinking. He wakes up with Vodka and goes to sleep with Vodka. 15 years ago he was a functioning successful Attorney and over the years he’s lost everything due to alcoholism. He’s gone to AA meetings, he’ll go for a week and not go back. It took three months to finally get him to see a doctor about his stomach. Over the years his blood work would show his liver was fine but I have a feeling the drinking has caught up to him physically. He will be scheduling an endoscopy and colonoscopy in the next few weeks. My question is when they test the fluid that was drained yesterday, will we get answers from just the fluid? When will we get a confirmed cirrhosis diagnosis?
Sunshine,
Perhaps it might be possible to join a Zoom or Teams meeting? Yes, the whole Covid situation is definitely causing a lot of problems.
If your husband is a heavy, long term drinker with both ascities and encephalopathy, it seems almost certain that he has cirrhosis. Clearly I have no medical training and that would need confirmation from his doctors.
The fluid that is tested when they do a drain will test for any infections. There is a risk of this from the drain.
It would take the doctors a combination of blood tests and scans to determine the extent of the damage. The definitive answer would come from a biopsy.
I suspect that your husband has been told the extent of the situation and is probably in denial. Perhaps you could ask him if you could look at the correspondence from his medical team?
You now have the added burden of the HE. Your partner needs to face up to the reality of the situation that he has arrived at, easier said than done.
I wish you every success moving forward with this one and I am sure that others, who have found themselves in your situation will come forward with further advice.
Mark
He had Wernickies Encephalopathy two years ago due to low Thiamine and being hospitalized for five days and Physical Therapy he was nursed back to normal and it went away.
It will come and go, the cause is an excess of ammonia and manganese in his blood. The treatment normally consists of lactulose to remove the toxins from his body and then possibly Refaxamin, it is an advanced antibiotic that works on the stomach.
that is interesting. I haven't heard of that before. can you direct me to more? Also, I've never had ammonia tested in my blood but for a no of years (not now) I did have a load of ammonia in my urine, ie its smelt like it and my urine pH was alkaline (about 8 instead of 6) for years on and off. I did use thiamine injections myself although, at the time, I didn't know I may have had elevated liver enzymes. I have had elevated liver enzymes since 2011..and I'm confused..not a drinker. ..and trying o get tested and find out what is going on
Here is a good starting point but I would discuss this one with your doctors:-
Hi and welcome,
As you have already seen from Mark's excellent reply, you will receive support here on our forum.
Hopefully, your husband is under the care of a liver team who have explained about his stage of cirrhosis. Has he been referred to the alcohol services in the hospital?
If you are in the UK, you may want to call our nurse led helpline service on 0800 652 7330, 10am to 3pm Monday to Friday we would be happy to have a chat with you.
Good morning. We are in Florida. We are in the early stages of his diagnosis so we don’t have a liver doctor yet.
Unfortunately, our nurse led helpline service does not cater for international enquiries. We wish you all the very best in getting a hepatologist. Keep posting on the forum. Take care.
Hi there ,I have just joined the site and I had the similar experiences, ascites and drained 8 litres of fluid and mild itchiniess and enlarged liver. I have not been drinking for eight months and my enlarged liver gone back to normal size , nomore ascites or oedema. the magic key is no alcohol and healty eating.
So there’s hope if he would only stop drinking. Ugh! He’ll tell me he’s stopped and then lie to me and drink behind my back so to avoid conflict I’ve learned to turn my head because until he is ready to be honest with himself, he won’t stop.
Hi Sunshine. Yes unfortunately addicts do lie about the extent of their drinking. It's exhausting to live with. Once their illness prevents them from working and they lose their income it's likely your husband will start to steal cash in the house and possibly ransack bank accounts as my husband did. You need to be on your toes, looking over your shoulder and be 3 steps ahead of them. Ensure your money is safe and if you can, get rid of any alcohol you have in the house. If he's not going to take responsibility and deal with his alcoholism, you need to look after yourself both financially, physically and emotionally.
I am so sorry you are going through all this. They have no idea the strain their actions and subsequent illness puts on the wives. If you need to talk, l'm here.
All the very best to you
Laura xx
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