"To others we grow old. But, not to brothers and sisters, we live in each other's hearts, share private family jokes. We remember family fueds, keep each other's secrets and grieve family sorrows. We live outside the touch of time............." ............Author Unknown
Post Edited (Helper of Mankind) : 7/23/2009 9:10:54 PM (GMT-6)
Helper, are they not prescribing Lactulose for your brother? It seems clear to me that he has encephalopathy. If they did a blood test for ammonia, they would know. Have they done this? An EMG is an electromyogram, which is used to test the electical activity of muscles. It is sometimes combined with a nerve conduction study. I can't imagine why they would be doing this. Are you sure it isn't an EEG he is having? That would be an electroencephalogram, to look at electrical activity of the brain. This could be used to rule out stroke or other brain damage. However, the first thing they should do is test for ammonia levels. If they happen to be normal, then an EEG or MRI of the brain might make sense.
I agree with you that all of his symptoms seem like encephalopathy. Did they ever measure the O2 sats and CO2? Was he returned to the hospital?
The only way you are going to get your questions answered is to confront the doctors. Ask for a prognosis and if hospice is warranted at this point. As you probably know from reading these posts, doctors don't like to be pinned down as to how long a patient has to live, and rightly so. They are not God. However, if you ask for an "educated guess" they may feel more comfortable in giving you a time frame. Every patient is different, though, and some who were thought to be dying (such as myself) have overcome their physical challenges, with excellent medical help, and are still here. I am not very impressed with your brother's medical care, but I also think that because of his active alcoholism they are not going to go out of their way for him.
I agree with Rick. The alcoholic who knows full well what his drinking is causing and continues to drink...is responsible for what happens. The caveat here is that the addiction is stronger than the knowledge of what it is doing. A person has to be so totally sick and tired of being sick and tired that he is willing to go to any lengths to overcome the addiction. Why some are chosen for sobriety and others are not is something we cannot know. But I do know it is only when an alcoholic waves the white flag of surrender and acknowledges powerlessness over alcohol that he begins to gain some power over it. It is a lifelong commitment, one day at a time.
I think you have made the right decision to wait until your brother asks for help before doing anything more. You are undoubtedly the one waving the white flag right now, as you realize that you cannot control your brother's alcoholism.
"To others we grow old but not to brothers and sisters. We live in each other's hearts, share each others dreams and laugh at private family jokes. We remember...... family fueds, keep each other's secrets and grieve family sorrows........... We live outside the touch of time." Author Unknown
Helper, thanks for the update. It sounds like your brother is aware of the seriousness of his disease and that it is time to confront it...or at least begin to. His wife sounds like she is good for him. Hope your transition is going well.
Hi, Helper. Was nothing said about emergency transplant? The fluid buildup can be relieved with large doses of diuretics and/or draining. I would say that large doses of Lactulose should be given for the ammonia; however, if his liver is not functioning at all, these measures probably won't help. I think you need more information; i.e., is he in total liver failure and what about an emergency transplant? However, if he never stopped drinking, he won't be eligible for one. He would need 6 mos. of documented sobriety in AA or alcohol counseling. You had previously posted that he was easing up on his drinking, but I can tell you that unless an alcoholic is ready to stop, that won't work. They will be right back to their regular intake in no time. I suspect that is what may have happened.
My thoughts are with you.
Post Edited (hep93) : 11/16/2009 6:36:03 PM (GMT-7)
"To others we grow old but not to brothers and sisters. We live in each other's hearts, share each others stories and laugh at private family jokes. We remember...... family fueds, keep each other's secrets and grieve family sorrows........... We live outside the touch of time." Author Unknown
Helper, it seems like your brother is getting good care for now. Your mom is younger than I am, so I hope she doesn't give up on her life if he doesn't make it. She is still young in today's world.
As for those who inquire about your brother, you might just say, "When there's news, we'll let you know," or the ever-innocuous "As well as can be expected." No need for details.
Your primary focus really must be with your family.
Hi, Helper! Good to hear that your mom got a kidney transplant and is doing well.
It's also good that your brother has not had a drink in so long. It could be that his ammonia levels in his brain are rising and he needs an increase in Lactulose, if he is on it. Or there could be neurological reasons for his recent symptoms. A CT scan will tell more.
If he is expected to live 6 mos. or less, Hospice could be called in. A doctor would need to make a referral. Then he could get nurses at home. Or perhaps he could get some visiting nurse care, without Hospice. Other than that, there's not much you can do.
Helper, very good to see you back here! What great news that your brother has been sober for over a year! That is a year more than he may have had if he had continued to drink. Did he just stop on his own or did he go to AA? As for the albumin issue, I believe they can give him medication for that. Once stabilized, they can address the ascites. Has he ever been drained? Is he on diuretics? Any other issues? Was he put on Lactulose? I know encephalopathy was an issue at one time.
Note: Melissa Palmer in her book Hepatitis & Liver Disease states this about albumin: "When the liver becomes severely damaged, it loses its ability to make albumin." Also: "A low albumin level in general is an indicator of poor health and nutrition..." How is his appetite and what is his diet like? He should be taking at least a multivitamin.
Post Edited (hep93) : 11/27/2010 12:01:49 PM (GMT-7)
Helper, good for you! Stay on the doctor's case. It's well known that patients get better care when they have family visiting and asking hard questions--being a healthcare advocate for their family member or loved one. I have no family to speak of, so have to do this for myself. It helps that I have medical terminology background.
Please let us know what the lab results are and what the doctor says about fluid restriction and diet.
Helper. I did find Ammonia levels are not always done unless patients mental status declines. Dougs Dr said that each person tolerates different levels ie: a 60 could have one person totally out there but someone else be functioning, with Doug I had to gauge by behavior and how steady his hands were. You may find that it isnt a test always done anymore on a regular basis. We had many examples of that being sometimes not a good gauge, I have had him so confused he wouldnt know where he was and levels be close to 150 yet on a different occasion be in a semi comatose state unreactive to stimuli of any kind and levels be under 100 so it is tough to judge. We had one episode where he was sent to the city on a vent, ammonia off the chart. I show up to ICU in boston later that afternoon and he is sitting up asking me if I brought his laptop..... why would I bring a laptop to a person in a coma I am not sure but the look I gave at that question ended the discussion. In too many words..... behavior is the best judge. Hang in there and please go over the ideas of a 3 ring binder to keep all info and care plans in!
Sue, you are right about them gauging behavior. I have never had an ammonia test, to my knowledge (and I have ALL of my lab reports); however, in the doctor's notes she always says "no encephalopathy." How would she know that? Strictly based on my behavior. However, in the case of Helper's brother, I feel an ammonia test is warranted.
Rick, thanks for all the info!