Please help me understand, I am not allowed by request of my spouse to go to dr appts. He is in end stage liver chirrsis, has/had hep c is an had been diagnosed with Hepatic encephalopathy
, he has trouble urininating, blows up like a balloon then takes diuretics, has been told not to drive(but does) for over 3 years, has high ammonia levels, just been tested for prostate and liver tumors. Not eligible for a liver transplant, goes to three mental doctors. Isn't there a time when a doctor would say - Hey you got this much time or get stuff in order. How much time can he have! We need to plan
The following 2 users give hugs of support to: coligny holypie (09-25-2011), suzieq46 (09-13-2011)
The Following User Says Thank You to coligny For This Useful Post: sharlice44 (04-30-2012)
I am here, trying to find out what i can about ESLD and find some support. My Fiancee has just been diagnosed with ESLD and everything i've been reading today has me completely freaked out. The doctors said as long as he stops drinking he can heal and will eventually be ok. But everything i'm reading seems to say the opposite. Is your husband a drinker? He has requested that you not be allowed to go to his appts, does that mean he "doesn't have a problem" that was (up until these last 2 weeks) Jerry's problem. I was only nagging him to nag at him. He didn't have a problem. I want to do everything i can to make him comfortable but he gets so agitated that i'm always asking if he's feeling ok or if he needs anything. And although we have a ton of support from my family, his hasn't been to see him since he got home from the hospital. None of his so called "friends" have been to see him either. It hurts me to think how he must be feeling that no one seems to support him thru this horrible time. He realizes he's done this to himself, he knows he should have stopped drinking years ago when the first seizure happened. But now that he needs support and friends no one is there. i could understand this if he had been a cruel drunk, but he's never been that type of person. Jerry want to get along with everyone. All the time. Now that i've babbled forever, i'll end this message with I hope and pray that things work out for your husband or you atleast can get some answers. Good Luck.
The following 3 users give hugs of support to: pirri329 holypie (09-25-2011), Silentsam (09-07-2011), sonlove (12-09-2011)
The "end" in end stage liver disease usually comes in one of two ways...
A GI bleed, which will occur suddenly, out of the blue (vomiting large amounts of blood or massive bleeding from the rectum). If he can get to the hospital quite soon, this bleed can often be stopped, and recovery to the previous state is possible.
The odds of a GI bleed can be greatly reduced by having outpatient endoscopic surgery to zap any vessels before they burst once a year or so.
The other way is when problems with blood ammonia levels gradually get worse as the liver slowly deteriorates and can no longer be controlled by lactulose. The patient will sleep most of the day and eventually slip into a hepatic coma and pass.
As long as there is no GI bleed, and ammonia is controlled, the patient can often chug along for years like this.
A third possibility is a hepatic tumor, which those with liver disease are prone to. An ultrasound every 6 months can usually pick these up. There is usually nothing that can be done about these, but they do give you a "three month notice" the end is near.
To BillinSD – Oh my God - really - there are so many other ways end stage liver failure can go - encephalopathy is a complication, as are varicies, how about CHF from the ascities, how about general deconditioning and muscle wasting leading to heart failure, how about kidney failure from the ascities, how about an opportunistic infection, how about pneumonia or pleural effusion from the ascities - stop over simplifying this - end stage liver failure is complicated and can be prolonged - it all depends on the patient and other underlying medical conditions.
To Coligny – If your husband is not eligible for a transplant, which if he is still drinking he is not, you need to talk to him about letting you make decisions for him - he is going to need a durable power of attorney - the spouse is not next of kin - his doctor is. You need to talk to him about end of life decisions and how he wants this to go – it can go peacefully or it can go very badly. If he is consistently encephalopathic it may not just be the ammonia – everything he ingests is a toxin – his liver cannot metabolize anything – pain relievers, alcohol, proteins, salt, cold medicine, allergy medicine, any opiate, antidepressants, the diuretics even – everything will affect his cognitive function. My best advice is to get him off any medication that is not necessary to maintain quality of life. He should be on the diuretics as long as they are not causing his kidneys too much stress (watch his creatinine levels), he should be on Lactulose and Xifaxin for the ammonia – Lactulose is a non soluble sugar that you take as a liquid and can be titrated to produce 2-3 soft bowel movements a day, Xifaxin is an antibiotic that binds to ammonia in the GI tract at evacuates it out of the bowel. He should be on some type of beta blocker for portal hypertension – this will keep the pressure in his portal vein down and help with the varicies – he also needs something like Nexium to control stomach acids. Low salt/low protein diet – salt for the ascities, protein for the ammonia. When you have his regular blood work done – make sure the run the values necessary to calculate his MELD score – this score is used for transplant prioritization but it will help you assess how bad the liver failure is – billirubin, creatinine, INR – you need these. Paracentisis will become more and more frequent especially if he has to come off the diuretics – and he should have an albumin infusion following the paracentisis to help reduce the ascities. This is hard – I have been through it – if you are not armed with information and the authority to guide his treatment it will be even more difficult. He needs to have a plan for end of life care – you need to talk to hospice – when the time is right they can make sure he has a peaceful end. I can’t tell you how long – but I can tell you we were surprised it came so fast with my mother. My mother died in July after 4 years with NASH and end stage liver disease and cirrhosis – her disease was not due to viral hepatitis or alcohol. The last year of her life was the worst – 5 months in a nursing home – encephalopathy, ascities, weekly paracentisis, the whole 9 yards – in the end she died of non infections pneumonia – the fluid had penetrated her lungs and she essentially drowned. I know this disease. You need to talk to your husband.
To Pirri329 – never in any of my conversations with the transplant teams, doctors, specialists, nurses, etc. did anyone state that you can “heal” from end stage liver disease – end stage is end stage – if he is in failure he either needs a transplant or he will not survive. Please see a GI doctor who specializes in hepatic diseases – and get informed. If he is end stage – what is the underlying diagnosis – is it cirrhosis? If so how much of the liver is affected? Do they have him on any of the medications I mention above? If all they are telling you is to get him to stop drinking and he will be fine – get a new doctor.
The Following User Says Thank You to kcooke For This Useful Post: sonlove (12-09-2011)
I too have end stage liver disease. My disease was caused from auto-immune disease. It came on suddenly 3 years ago. My GP is fabulous and has sent me to gastroenterologists, neurologists, and I am assessed every 6 months in Vancouver by the transplant team for the option of a new liver. The only question is when am i sick enough? I am a registered nurse so I know what I am in for in the long run if I can't get a liver when I am activated, but that could be years yet. I take lactulose, diuretics, acid reducers, immunosuppresents, aspirin, depression meds, cholesterol meds and the list goes on. I'm very weak, and lay in my bed alot. I have no quality of life right now and find that very frusterating as I was once very very active. The very best thing to do is to keep close scrutiny of your liver panel, I have mine done every 2 weeks or sooner if I am feeling really sick. Take your lactulose, keep your bowels moving and insist on seeing specialists. I live in Canada where I have health care, so expense for me is minimal, but you need to have the right regime of meds and follow-ups to keep you alive. Most lay people don't know what to do, so I don't think sarcasm should be directed at anybody. We are here to help each other and to be of support.:
The following user gives a hug of support to Silentsam: holypie (09-25-2011)
I am very sorry to hear that you are ill. I don't have any experience with the transplantation process in Canada. However, in the US we use a MELD score to calculate a person’s expected 3 month mortality percentage and that is how patients are prioritized for transplant. On the internet you will find calculators that you can use to get this score for yourself - you will need your current billirubin, serum creatinine and INR. The score is basically your percentage of chance of dying in the next three months as a result of your liver failure. Normally you are not even considered a priority until this number is in the high 20's. My mother was sick for a total of 4 years waited two years on the list without receiving a transplant and died without her MELD score ever reaching the 20's. You are a nurse - you understand what the liver does, how the body will decline, and that even a simple opportunistic infection can change everything. I am glad you have a good doctor that you trust - it can make a difference - but you need someone to advocate for you as well. This can be a long journey true - but anything can happen. I wish you well and hope you get a new liver soon. If I can answer any questions for you please let me know – but I have a feeling you are well informed. Good luck.
Another note as to the “when am I sick enough” thought – sometimes – and quite often really – the question isn’t “when am I sick enough” it’s “am I too sick for surgery”. This was the case for my mother – whose decline actually reached a point where they decided she would not survive the transplant. It’s a very fine line.
I know these things can be difficult to hear – but sometimes the brutal truth is the best medicine.