My husband has stage 4 cirrhosis and is very sick!

Why don't you carry a bottle of lactulose with you at all times? I always did and it made a big difference. You need to treat the HE as soon as possible when it comes on. It's no different than his other meds. Take when needed, or scheduled. For almost 5 years I needed extra lactulose at times and never hesitated to take more when I started to get goofy.

Ongoing, welcome to the forum. From the information you gave, I was thinking that in Nov. his problem with SOB was probably due to ascites. Has anyone ever mentioned a TIPS procedure? That is often done when there is a big problem with ascites. You might want to ask about it.

Congrats to your hubby on his 4 years of sobriety! A transplant center may not require documentation since it has been that long--or they might.

Is it necessary for him to do errands (aside from medical appts.?) It's very important that he take his Lactulose regularly. As David suggested, it might be best for him to carry it with him (scope out the closest bathrooms!) and take it as soon as possible.

From what you describe, I'm wondering if he has fatty liver? Has he had a change in diet when he does eat? It's important that he not eat red meat, as that is the most difficult protein for the liver to digest, and especially a diseased liver. Red meat is also high in fat content. He needs to eat a lot of fresh fruits and veggies. When I couldn't eat anything else, I could eat fruit. How about Boost or Carnation Instant Breakfast for nutrients when he can't eat?

Now that he is being drained per tube daily, have his diuretics (water pills) been decreased? Diuretics are very hard on the kidneys. so I'd ask about that. If you get a copy of his labs (how often is he having them done?), keep an eye on the BUN and creatinine. If they are high or trending upwards, it's a clue that his kidneys are being affected.

It's very important that you learn as much as possible about liver disease and advocate for your husband. I suggest you read the info in the folder entitled Hepatitis Resources. It deals with all types of liver disease, not just viral hep. Also, you might want to check out the Caregivers thread for info and support.

I truly hope that your husband is able to lose enough weight to qualify for a transplant...that he is able to hang in there. It's great that he has a positive attitude. That will carry him a long way.

Don't forget to take care of yourself in all this. It truly is an "ongoing" disease and you will get burned out if you don't get "me time."

Hugs,
Connie

Ongoing,
Welcome to this forum, but I am so so sorry you needed to find us. I cannot stress how important taking the lactalose regularly is for your sweetheart. I carry it in my purse along with a bottle of Boost and mix it in Boost if we are out doing errands. I have been full time caretaker for my HEP C End Stage Liver Disease hubby for 9 months and he had all symptoms I read in your post...trouble breathing,..fluid build up, etc.

Over the 9 months whenever I would take him to Dr. and he wasn't thinking right...Dr would say "Up the lactalose, make him p_ _ p out the toxins, as his liver can't sift them out of the bloodstream anymore...so p_ _ping is the only way they can get out." So...I'd up the Lactalose and sure enough, after big BM he would be lots better..and pain would be better too...for a while. Don't know if it works this way for everyone. But it does with us. The lastalose is his "Lifeline". My hubby doesn't like to take it in juice as the acidic part of the juice upsets his stomach. We are now at the point where I call his Boost, the chocoalate milk. Guess, that makes it sound more appealing to him.

Best to you. I have a big purse..we have the BIG lactalose bottle. :)
Angie1953