My mother was diagnosed with Cirrhosis of the liver about 6 years ago. Against all odds she has lived through it thus far... The cirrhosis was due to excessive drinking for many years, Hep B and Hemochromatosis. She was in a coma six years ago and the doctors told she they were sure she wasn't going to make it through the night. Since then, she has quit drinking (as far as I know), has a better diet and gets her blood drawn for testing every three months. About two years ago, her doctors told her she only had 6 months to live, again that was 2 years ago, so they are not always correct on their time frames. She has neropathy and really bad reumatoid arthristis so she is always in some sort of pain. She vomits every day and also has chronic diarrhea. (Sorry for my terrible spelling). Anyways, she had her Gaul Bladdar out a couple months ago thinking it would help and it did for about two weeks she was out of pain and in Paradise. After those two weeks, she is back to the same old pain and vomiting ritual she has gone through for the past 6 years. Last night she told me that he doctor called her to let her know the blood tests came back really bad and her billyrubens were extremely high. My mom has also been having really high fevers and sometimes when I speak with her she seems confused and doesn't remember telling me things so she is repeating herself and I know when she is drunk and she was not at these times.( Trust me when you grow up with an alcoholic you know when they are drinking) Her doctors said that with her symptoms and blood tests, it seems she only has a few months to live. To hear that is heart wrenching but is it true? Because remember when I said 2 years ago they gave her 3 months? SO basically after all this, my question is how do I know how long she is going to have or at least a good prediction with the above being said. Also, what symptoms will she have when it turns into liver failure or how do I know if she is currently experiencing liver failure.
She is so sweet and I just feel terrible for her for how much pain she is in. I am her only child and I want to do what I can to spend the time with her and be there for her through this time. I recently got married and do not have children yet, so I just want do at least prepare myself for the fact that my mom might not ever meet my children. I guess I am just looking for someone who has answers or some advice for me. This is an ongoing battle and as much as I will miss her, I just want her to be okay and not feel any more pain and discomfort.
I don't know very much about alcoholic cirrhosis, so I'm hoping that someone else will come on here soon and answer your question.
Generally speaking, I don't think anyone knows how long someone with End Stage Liver Disease (ESLD) has to live. I would just encourage you to spend time with your mom. Is the hospital able to arrange some hospice care to help?
I am sorry to hear of your mom’s condition. It’s great to hear she is having lab work every three months. This is routine for those of us with cirrhosis. I have read some of your other posts in order to gather as much information as possible. I understand her point in not wanting a transplant but she should still be registered with a transplant center so she would receive the best treatment available. Receiving a transplant would be entirely up to her.
I think the quality of her medical treatment is questionable. Vomiting, diarrhea and fever can be symptoms of infection. You mentioned she had her gallbladder removed a couple of months ago. A blocked bile duct from gravel or a gallstone can lead to infection and extremely high bilirubin. Only in an emergency situation should any cirrhotic individual have surgery so this must have been pretty important. You mentioned “for about two weeks she was out of pain and in Paradise” then things got bad again. It is certainly worthwhile following up on with a different doctor.
Persons with advanced cirrhosis and a life expectancy of just a few months have decompensated symptoms. One decompensated symptom is Hepatic Encephalopathy (HE). You mentioned her confusion this is likely HE. You can read more about HE at http://www.nlm.nih.gov/medlineplus/ency/article/000302.htm Xifaxan, lactulose and avoiding red meats are very common treatments for HE. More advanced treatment is available for more severe attacks. Perhaps HE was responsible for her coma 6 yrs. ago.
Does she have any other decompensated symptoms such as Ascites, Varices, or Jaundice? Do you have a copy of her lab results if so you could calculate her MELD score. MELD= Model for End Stage Liver Disease.
Unfortunately no one can answer your question as to how much time she really has left since no two people are alike. Her medical file will give the best indication of the condition of her liver from there an estimate can be calculated.
I hope this helps you out, I strongly recommend registering with the transplant center even if she has to drive a couple hours the benefits could save her life.
Hello Randy and thank you for your respose. She refuses to be on any type of transplant list. She has 9 out of 10 of the symptoms of a decompensated liver, I have done some research and it seems as if once her GB was taken out, it caused her liver to work over time, making it go from compensated to decompensated rather quickly. They are saying there is no infection but that would explain the fevers. She has had the same symptoms of vomiting, jaundice, ascities, adema, and I am not sure about the vericies but she is bleeding a lot when she cuts herself( because she cuts hair for a living) She also is brusing easily. She has had these symptoms since before she had her gaul bladdar out but the symptoms seem to get getting worse by the week... the fevers are new though and I was thinking it might be due to infection but when I read about symptoms for a decomensated liver, fevers were one of the symptoms.
I am working on obtaining a copy of her lab results, what site can I utilize to calculate the MELD score?
Well I wish I could help you more but it sounds like you have it figured out. Here is a link to a MELD calculator.
You may just ask her doctor what her MELD score is. You know that by going to the transplant center they will just treat her if that is all she wants, that much she deserves since I understand she doesn't feel she deserves a donor liver. I have considered the same thing.
I am very, very sorry about your mother's situation. It must be very difficult and confusing to you. Of course you don't want to suffer any more. Unfortunately liver disease only gets worse over time and the suffering will only get worse I'm afraid with time. You can minimize her suffering by helping her to get proper treatment to manage her condition(s) as her liver disease progresses so her can have the best quality of life for as long as she lives. Which could be quite soon time.
From the symptoms and complications you mention your mothers disease probably is not be as advanced as you believe. She just had her gall bladder removed months ago? For anyone with very advanced liver disease and End-Stage Liver Disease any surgery especially abdominal surgery is not permitted unless it is life and death situation. Because the chances from dying from the operation is so high.
I also noticed you don't mention your mom having to be drained of liters fluid from her abdomen weelky. You don't mention her vomiting or defecating blood. Going into a coma after confusion and stupor. Trips to ER. You don't mention that she lost all of her muscle mass and is just skin and bones? This is what happens when a person with liver disease is End-Stage.
Vomiting and diarrhea for 6 years are NOT symptoms of liver disease, Hep B or hemochromatosis. A gastroenterologist should be able to figure out the problem. Also if her liver disease were End-Stage an infection and "really high fevers" can be deadly. For end-stage liver disease any bacterial, virus or fungal infection requires hospitalization, IV antibiotics and there is a high risk of death.
Your mother may still live for many years of life if she gets the proper medical care to diagnose her illnesses and get them managed properly.
No hepatologist (liver specialist) ever says to someone how much time you will live before all the options are tried. So these doctors your mother saw has poor people skills and it appears little knowledge of liver disease. Were they gastroenterologists or hepatologists? If not how are they qualified to comment only something that is not their field of expertise. I wouldn't ask my primary care doctor or dermatologist for advice on my liver disease, hep C or liver cancer either. The only doctors qualified to treat cirrhosis are hepatologists.
The answer for anyone with your mother's symptoms is to have her referred to a transplant center where she can be properly cared for.
Randy is correct she is NOT receiving appropriate treatment and is suffering needlessly. Even for us with End-Stage Liver Disease, our symptoms and complications are managed at transplant centers until transplant and the rest of our lives after transplant OR until the end of life if we don't get a transplant. I am speaking from 5 years of personal experience here. The only doctors that can take care of your mother is the team of doctors at a liver transplant center. Because someone goes to a transplant center doesn't mean they are there for a transplant. There are many people who are not eligible for a liver transplant that are care for and then sent to hospice if that is their choice. So first understand the reason for a liver transplant center. Whatever your mother wants to do is up to her. No one can force someone to do anything. How we want to die is an individual matter. But to suffer needlessly and knowing it is only going to get worse makes no sense. If someone wants to die that transplant center will help them fulfill their wishes as they can educate the patient as to what will happen in time without a transplant.
Of course as for as support and care of anyone with illness it is vital psychologically for the patient to have love and support around them.
Things may not be anywhere near as bad as you believe.
Good luck to your mom and yourself!
Hello and thank you for the informative post! I really appreciate the time you took to write it and it also gives me hope. I looked up some Hepatologists in her area so hopefully they take her insurance to get another opinion. I did not mention that she did in fact get rushed to the ER 6 years ago because she fell. She had so much ammonia in her system, she was hallucinating. SO I am very familiar with this. They will not drain the liquid from her stomach and I am not sure why... I do believe she needs a second opinion. She also had to go through about 20 doctors until she found one that would take her gaul bladdar out because they were terrified she was going to die on the operating table. (I actually was scared too so I drove to Tucson and suprised her at the hospital) She hates hospitals, does not want to be in a treatment center or go to one so that will not fly with her. She smokes a pack a day, eats all the wrong things and just wants to enjoy what time she has left without being in an out of the hospital all the time. She does take her vitamins and all the other million pills they have her on for pain and itching and this symptom and that symptom. They have pills for every symptom but not one for the common denominator of the bad liver!
"You don't mention her vomiting or defecating blood. Going into a coma after confusion and stupor. Trips to ER. You don't mention that she lost all of her muscle mass and is just skin and bones? "
She also has all of these. Vomits probably about ten times a day. Not sure about the defecating blood, not sure she wants to go into that detail with her kid. She did go ino a coma with the confusion, also while she was in there she aspirated and was in the coma for about two weeks. Then was on lactulose for a few months and then her body just automatically does what the lactulose did... She is skin and bones except for her tummy and where she is swollen. No muscle mass at all and we are very muscular people.
"Vomits probably about ten times a day."
Vomits what? Food, blood?
Can't be blood as when varices burst they will usually keep bleeding until a patient bleeds out. Every time a patient vomits blood there is a 30% chance that the will die. If your mother was vomiting blood often she wouldn't still be alive. Also if a person is vomiting that much they would become dehydrated which would trigger encephalopathy, electrolyte imbalances and many other medical problems even in a healthy person.
"She does take her vitamins and all the other million pills they have her on for pain and itching and this symptom and that symptom."
Well as you said all of that doesn't affect the underlying disease, liver disease.
Since you say she is skin and bones and don't know about all of her symptoms as she maybe hiding them for you she is so ill she can only be cared for by the specialists at a liver transplant center. All else of a waste of time. If she wants to just die that is her decision but she will need to be hospitalized whether she likes it or not as she develops more complications from her liver disease. EMTs and ER staff will save her life until she is on life support and then if she has a DNR than she can choose not to be resuscitated. She appear naive about liver disease and what will happen to her without treatment.
While it may be her wish to die, unfortunately as time goes on and her liver disease is not managed properly she will become more and more unable to care for herself and she will either have to be hospitalized due to life-threatening complications of liver disease or sent to hospice.
I am so sorry that you are dealing with this. While I do believe that people should have the right to refuse treatment or kill themselves I find it selfish on their part to have their loved ones suffer because they don't care to live. It is the loved one who suffer the most. I have seen this in many alcoholic patients who would rather drink than live. Mean their family is caught in the middle unable to do anything.
Hi...sorry to hear about your Mom...I know what that denial is.... I am 65 ESLD Stage 4 w/decompensated liver and going through the steps to get on a transplant list. I asked to see all my liver scans with my doctor. He showed me my gall bladder and that I had gall stones but told me at this point he would not do a gall stone removal because of my liver so I am surprised that your Mom had her gall bladder removed.
Don't mean to be a hard *** here but you say she is so sweet. Well make her an appointment, put her sweet butt in a car and take her. If she refuses than you have to live with her decisions. However, there seem to be some questions as to the levels of her liver situation. Tell her if she loves you, she'll do it. Hector is right. Whether she gets a transplant or not at least she will be getting the care she needs in the end. Also, to even qualify for a transplant you have to go through testing for your heart, kidneys, lungs and mental stability. So she might not even qualify but by at least by making the attempt her quality of death will be monitored and be less painful.
If you read any of my other posts you will see I am the rah-rah girl who can be awfully blunt. It is sad to put this type of pressure on you, especially if she won't listen to you. Here's another thought. If she doesn't want to go to the doctors tell her that you and her need to go over her final requests so that you will know what to do in the end. Maybe that will spur her on.
We are kind of going through this with my 88 yr old mother who just walks around talking about wanting to die all the time and saying crap like well I got a DNR. I asked her, if you collapse here at home or you feel ill what are you going to do if you can't reach one of us? She said that she would just call an ambulance. I told her that she might as well tear up that DNR if she calls an ambulance. An EMT, an ER, will treat her which voids the DNR.
Sounds like she needs to have a better understanding of what is going on and if she can't mentally function then she needs to start listening to you. Are you her POA (Power of Attorney).? You need to know what to do. If she continues to not take care of her self or reach out for help you can also call social services and they will advise you what to do. Hector said all my thoughts much better in his posts above. Sounds like she is unable to get a grip on it. If she doesn't want to cooperate with you, then you inform yourself, then you will know what to do. Is she going to get mad at you. Yes, probably. Will you be mad at yourself if you don't try. Yes, definitely.
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