I'm sorry to hear that you're going through such a difficult situation, and my hope is that your husband will be successful in staying sober -- drinking in his current condition will not only make him ineligible for transplant, but it will only further hasten liver failure.
Bill has provided lots of essential information and advice. From what you are describing, your husband's condition is serious, and survival will require him to be diligent and proactive in following doctors orders. Decompensated cirrhosis can be managed in certain situations but for how long varies from person to person. It's essential that your husband take serious measures to prevent further complications -- no alcohol, no salt, no red meat, adequate protein and exercise, regular follow up with docs. My best wishes to you and your family.
I don’t have personal experience with transplant medicine; other in here do, and will hopefully stop by later to share their stories with you.
In the meantime, please make sure your husband remains compliant with all the doctors’ orders; if he doesn’t fully understand them, be sure to ask until they’re clear, and there aren’t any questions floating around.
Liver transplants are carefully considered; in most areas the organs are in short supply, and the patient often becomes pretty ill before they get the new organ. The TP center is reluctant to give someone a valuable organ if they look like they’ll not take care of it; they want to find the organ a good home, so to speak. It’s critical that the center that evaluates your husband believes he’s done drinking and partying, or he’ll likely be denied.
A good idea is to request hard copies of all lab results and procedures; start a little home medical file, and take an active roll in all this. Getting copies of the labs will help you communicate more effectively in here, as well as with other specialists in the future. The hospital he was seen at will likely give him copies if he talks with the folks at hospital records department.
Meanwhile, take care, and good luck to you and your family—
Bill
Hello! Yes the doctor has done all of that when he was in the hospital. I will keep you updated and again thank you for your help.
Hi again,
Okay, that makes sense; at least it does from the doctor’s position. They require a period of sobriety from drugs and/or alcohol before even considering a patient for transplant. It’s critical that he follows *all* orders and instructions from here on out, if he expects this to work for him.
The GI doc will likely take more tests, and suggest a management plan for the interim. Is your husband taking Lactulose right now for his ammonia levels? The confusion is technically called ‘hepatic encephalopathy’ (HE) and is a result of poor protein metabolism. On his end he can help by avoiding red meat; but he needs to continue to eat proteins from legumes (beans), perhaps white meat chicken, and soy products. If he isn’t already, the GI doc will likely prescribe Lactulose and perhaps Rifaximin to help reduce episodes of confusion.
The doctor will also likely restrict his salt intake; they may put him on a salt free diet entirely. This will help with fluid retention, not only in the abdomen, but also in the ankles and legs.
Have they scoped his throat yet? This procedure is very important; they need to look in his esophagus for varices. These varices are a result of a cirrhotic liver, and can be readily managed, as long as they are found in advance. They are somewhat similar to varicose veins in the legs, but are subject to rupture and hemorrhage. The procedure they use is called an ‘EGD’ or ‘endoscopy’; make sure one of these is scheduled soon.
Good luck on the 10th, and let us know how things go—
Bill
Thank you! No they said they won't put him on the list until february he has to wait for 6 months to be sober. Yes i meant he had to have fluid drained. And God Bless you to.
Hi Bill, my husband was diagnosed about 2 years ago but he didn't start getting help until August of this year when he started having the fluid build up and they did a tap then and just a month ago he was in alot of pain and his legs and ankles were so swelled and he had alot of fluid in his stomach so he called an ambulance and thats what it was he had the ammonia build up and it was a severe infection his kidneys were even failing him. The doctors aren't telling me much except he has to wait until february to get on a transplant list because he didn't quit drinking until August.
He hasn't went to see the GI doctor yet he has an appointment on the 10th of this month.
He went in August to see them but they didn't see him after that until now.
And thank you for taking your time to talk to me. I really need more info on the signs of last stages.
Sorry you are going through this. It does sound like end stage of the disease. If by tap you mean fluid drained then this could be why he lost so much weight. The weight of the fluid. Hopefully they will be able to stabilize your husband to make him comfortable. Has he been listed for a transplant? If not try and get him on the list. Best of luck. God bless.
Hi there,
Sorry to hear of your husband’s troubles. How long ago was he diagnosed?
The toxins might have been ammonia buildup from poor protein metabolism; was he confused or delirious at times? You mentioned he was ‘tapped’; I assume he had developed fluid in his abdomen?
This sounds like symptoms of ESLD (End Stage Liver Disease). What sort of information have his doctors discussed with you? Has he been able to see a GI doc or hepatologist yet?
Welcome to the discussion group, by the way
Bill