I am NOT a doctor and cannot give you medical advice, this advice is simply based on what I've seen with my husband who almost died after following what I consider to be very bad advice from his doctors. I cannot say what would be best for you, I can just say what I think and you can choose to follow my advice at your own risk. Everything me and my husband did was at our own risk - we were constantly monitoring what worked and what didn't. And we learned the hard way, the recommendation to eat red meat was one of the things that DIDN'T work for him!!!
If you are at such a late stage with cirrhosis that you are at a high risk for HE, you will likely have a very low albumin level (and this is why doctors may tell you to eat meat). I DO understand they want you to get your protein level up ASAP but personally (especially after seeing what happened to my husband) I do not think it is safe to recommend red meat to people.
For anyone reading this blog I would only recommend you resort to red meat if you are unable to get your protein levels up from another method. I would recommend a blended tofu and peanut butter shake or a Visalus shake (or use a protein powder supplement from a health food store or GNC, etc) with peanut butter and tofu, FIRST, and if that doesn't work, then try chicken or fish. Red meat should only be used as a last resort. I first read about how red meat should be avoided, in the Cirrhosis Bible, and COMPLETELY AGREE!!!
I am still trying to wrap my head around the fact that Jake's doctor encouraged him to eat red meat and animal products. All the research I did online, including recommendations from the liver cirrhosis bible, seemed to say that cirrhosis patients should avoid red meat.... so for the most part, he did, but then all three times when he wound up in the hospital, it was after he had large portions of dairy products, or he ate red meat! The first time he went into the hospital, it was after he drank a gallon of milk in just a few days (thinking the more protein the better). He didn't have encephalopathy immediately, though he was pretty spacey in the hospital and I found out later that they were giving him lactulose while he was there (I didn't even know, at the time). His ammonia was apparently pretty high, and being managed with lactulose, which, for some reason, they never gave us a prescription for, when we left the hospital (?!?).
He got encephalopathy soon after about one week after he was dismissed... shortly after consuming red meat (spaghetti with meat sauce).
PLEASE look up the benefits of probiotics, because they can cut your risk of encephalopathy in half. You can read more about that, by clicking HERE. Not ONE doctor EVER mentioned probiotics (which are proven to cut a person's risk in HALF)!!! You'd think with as much money as doctors are paid, they would be totally up to date on this stuff, but... no : (.
Also, if you can afford to get a machine, Drink Detox water (only the type from a medical grade certified machine). Dr. Hiremitsu Hayashi states (in a video I can show you if you contact me through blogger) "you will have 'clean feces' if you drink electrolyzed reduced water because it has the function of detoxifying or neutralizing toxic substances such as hydrogen sulfide and ammonia contained in the feces. "The toxic substances will start to decrease as you drink the water and you will have a healthier liver." If you have cirrhosis and are at a high risk for hepatic encephalopathy, you should definitely watch this video.
I'm sure you already know that Hepatic Encephalopathy is caused by a buildup of ammonia in the blood. I sure wish someone could have told us about this water before Jake crashed and totaled his car. He could have killed himself or someone else!!!
During my months of research about Cirrhosis, before Jake developed it, I had read about hepatic encephalopathy many times, and thought we were lucky that it hadn't happened (yet). Again, I am certain that his ability to stay out of the hospital, for as long as he did, was due to the fact that he rarely ate red meat and very little animal protein.
When I began to research "cirrhosis" and "diet," the thing that came up over and over and over again was that animal protein should be avoided, and more vegetables should be added. Even in the Ezra Protocol, it says to avoid meat, and add more vegetable protein.
You can read this excerpt at TheLiverDoctor.com:
The cirrhotic liver cannot handle large amounts of concentrated protein at one time and for this reason minimize the consumption of red meat and poultry. If you eat too much animal protein, ammonia levels will build up in the blood stream causing fatigue and mental confusion.
So, when I took Jake to see his new primary care physician (whom I will call Dr. Farmer), I was surprised when his doctor (who did have excellent bedside manner, so he seemed like someone we could trust) told Jake that he should eat more animal protein. His exact words to Jake were:
"I want you to start eating a healthful diet: fish, chicken, eggs, meat." I found it funny that he used the word "healthful" - yet, he did not mention vegetables ONCE. What the....!!??
Later, Jake was confirming what to eat, and said: "So when you say proteins... you mentioned meat... you mean chicken and eggs?" and Dr. Farmer responded (again, verbatim) "Chicken and eggs, fish, red meat, pork, I don't care." And I guess it was him tossing in the words "I don't care" that kind of got to me (although he did say later, when I expressed concern over Jake eating pork, that the low-fat meats are best).
I realize that by saying "I don't care" - he was just trying to emphasize the fact that Jake really needed more protein ASAP, so this was just his way of getting the message across that Jake had to act fast. He was very concerned about Jake having a very low albumin level. Jake was soooo bony, he literally looked like a walking skeleton (with the tummy of someone expecting twins). Dr. Farmer is a very caring doctor and Jake loves him. I am sure he didn't mean to give Jake bad advice.
But I believe that telling him to eat meat (and the impression we got was, "as much of it as you can, to gain weight"), was somewhat negligent (and pretty dangerous) advice. He also said, and I quote this word for word: "Animal protein is best."
I couldn't help thinking, "Was this guy friends with Dr. Atkins (who died of heart disease) or what??" He did tell me to keep a close eye on Jake for signs of encephalopathy, like confusion. But he didn't give us any kind of prescription for Jake to take, if confusion did seem to set in. For someone who has never experienced this before, it can be hard to diagnose. It can be hard to tell the difference between slight, stress-induced memory loss (which I've experienced myself, recently), and actual encephalopathy.
As suspicious and doubtful as I am of doctors, I somehow let myself believe that it would be "ok" to follow Dr. Farmer's advice, and to encourage Jake to go ahead and eat animal protein. I think this is because I felt guilty that Jake was in so much pain and discomfort just before going in to see Dr. Farmer... he was literally crying, in agony and frustration a few days before his appointment. I thought, maybe what I am recommending isn't correct. Maybe I really don't know what I'm talking about, and I'm making Jake even more sick by telling him not to eat meat.
When we left the doctor's office, I commented to Jake, somewhat jokingly, yet serious: "So, where do you want to go for your big steak?" Jake knows it would be hard for me to see him eat a steak since I don't eat meat, but he also knows I would do just about anything to save his life. To my surprise, he told me that he couldn't even imagine being able to eat a steak, because it was so hard for his body to process food already - he imagined a steak would probably be very difficult.
We left the hospital, and Jake continued to add a few more meals of chicken and turkey sandwiches to his diet. But it wasn't enough to bring his weight back to normal, and by the 21st of December, he was in so much discomfort and felt so fatigued, that we decided it was time to go to the hospital and get a paracentesis. I found out later that before he was admitted, he consumed an entire gallon of milk in just a few days, with a box of Frosted Flakes. We ended up staying there for a whole week, being admitted on December 21st, and being released on December 27th. We spent Christmas in the hospital.
The doctors and even the nutritionist there seemed to believe it was fine for Jake to eat meat, and didn't seem at all concerned about the fact that this could cause Jake to develop encephalopathy. It's one thing to hear one doctor who isn't concerned, but then to hear 3 more doctors and the hospital's nutritionist say the same thing - that it's perfectly fine, and that recent research has shown that the consumption of meat, actually outweighs the negative effects of not getting enough protein... it makes you start to believe that hm... maybe it really is for someone with a high risk of encephalopathy, to eat meat!
When Jake went home from the hospital, he began to eat large quantities of animal protein, like scrambled eggs, chicken, spaghetti and meat sauce. It was like he went from having almost no meat, to whole animal protein consumption.
I noticed the first sign that "something was up" about 3 days after he left the hospital. It was a Saturday night, and I had just made him a large amount of juice from our juicer, including bittermelon juice (which I will admit doesn't taste great) to help him with his ascites (large belly).
Jake was very resistant to drinking the juice, and after I'd just spent over 2 hours in the kitchen, making this for him, I wasn't about to let him blow it off. He kept trying to avoid being around me, and at one point, was even hiding out in the bathroom. When he came back out to the TV room, he seemed confused, and I asked him a few questions and he kept saying, "What?" (I am learning, this is a sign to watch out for). No matter what I asked him, he just responded with, "What???" He sometimes seemed a little spacey since he started to get sick, but... this was different.
I asked Jake to tell me the birthays of his two children, and he couldn't. I thought, Oh, NO... It's HAPPENING! I had so hoped we could avoid encephalopathy, but... it seemed that we were about to go through it after all.
What I realized that night, was that when your husband starts to develop encephalopathy, and becomes very agitated, confused, and stubborn... it is just about impossible to get him to get in the car with you, to go to the hospital!
I asked Jake to please come with me to the hospital, and he refused. I told him, if you can tell me the birthdates of both your children, we can stay home, but if you can't, we need to go. He refused to come out of the bathroom. I told him, "Please come with me to the hospital. If you don't work with me, I am going to have to call 911, and there's going to be an ambulance and fire truck in front of our house, flashing their red lights, with all the neighbors peeking out the window, and there will be strangers coming through our house." Jake yelled, "WHY ARE YOU DOING THIS TO ME?????"
OK, so maybe I should have used a more gentle approach.... but I was going into a state of panic that was just as bad as his!
I was completely exhausted and to be honest, did not feel like taking Jake to the hospital OR having a crew of paramedics tromping through our house, carrying him off strapped down to a gurney. After 15 minutes, Jake suddenly blurted: "1999" (The year his daughter was born). I didn't know if this should qualify as an acceptable answer, being a quarter hour late, but... I was so drained, I just accepted it.
The next day he seemed a lot better. I called Dr. Farmer and told him what happened, and he said it would be unusual to experience encephalopathy for just a few hours, and then go back to normal, so maybe it was just stress. But he said to continue to keep an eye on him. Still no recommendation to go get lactulose, and unfortunately it didn't occur to me to ask if he could write a prescription for it (I was unaware that there was anything he could take!)
Two days later, a few hours after Jake went to work, I got a call from a woman at his employer's HR department, letting me know that Jake never made it to work. She said that someone had seen him "being detained" on the side of the road, and there was a police car there, but she couldn't give any more details than that. I freaked out, with no idea where he currently was or why he had crashed his car... was it a DUI? Did he start drinking again? Far as I knew, he had dropped his daughter off at school on his way to work. I had to get on the phone and call several police departments, hospitals, and the CHP. Finally, I learned which hospital he had been taken to in an ambulance.
When I arrived, he didn't recognize me. The nurses had him strapped down to the bed. He was extremely agitated, withdrawn, and kept gnawing at his hospital gown. When I asked him questions, like, "Do you know who I am?" the response I'd get was, "Yes sir." or "No sir." and "Please help me." For anyone who has never been through this, it is just about the scariest thing a spouse can ever begin to imagine going through, while the person going through it most likely won't remember a thing.
When Jake had encephalopathy, it was as if he turned into a different person. I gave "this person" a pseudonym: Bob. This somehow made it easier for me to talk to Jake about what it was like to deal with the situation. It was like a clear cut transition. Suddenly, he wasn't Jake.... he was Bob.
I learned that Jake had crashed into a cement wall when he got confused while driving. He doesn't remember much of it, but here is an "after" pic of Jake's car (the damages are almost $9,000 and we're still waiting to find out if our insurance will cover the whole thing, or deem his car a salvage).
He could have killed himself, or someone else, so I am really surprised (and upset) that his doctors didn't tell us he should start taking lactulose as a preventive measure! Yes, I realize Jake should never have put himself in that position by drinking more than he knew he should have. But what if he had killed some innocent little girl crossing the street on her way to school? In my opinion, doctors have no excuse for not writing prescriptions for lactulose if they know someone is at a high risk for encephalopathy.
Encephalopathy can be difficult to recognize the first time it begins, because the person who develops it is probably going through a slow decline in their mental alertness and acuity, to the point where you don't realize how bad it's gotten (not to mention the fact that the person taking care of them may be slowly losing their mind too!) So when you see the symptoms of encephalopathy - the confusion - you may not realize just how bad it is, and that you really do need to get to the ER!
Jake also could have suffered from brain damage due to a lack of oxygen (to be honest, I think he did experience a small amount of this during his second episode... more about that later).
Jake was in the hospital for 3 days, hooked up to an IV and getting pumped with fluids. They released him on a Saturday afternoon. He was looking better, and thinking more clearly, than he had been in a long time.
We got a prescription for Lactulose, and took it to our usual pharmacy (Costco) but they said they didn't have it in stock, and it wouldn't be ready until Monday. The pharmacist didn't seem terribly alarmed that they were out of stock, and she didn't say anything like, "You know, this is really one of those prescriptions that you do NOT want to be without.... you should probably go to another pharmacy to get this, just to have it on hand."
I guess I should have known that I should have gone straight to the next pharmacy and the next one until I got my hands on it, but I was naive and thought Jake didn't need it right away because he looked so good and was so much more alert than I'd seen him in months, and because I just assumed my husband would stay away from red meat. I must have told at least 3 people at the hospital, in front of him, that I was sure the reason he was there was because the doctors told him to eat red meat.
PLEASE LEARN FROM OUR MISTAKES. Stay away from red meat (and animal protein) if you are at a high risk for encephalopathy.
Keep Your Protein Levels UP
PLEASE NOTE: If you do have cirrhosis, you are going to need to get your protein levels UP (but do it without consuming too much animal protein). You can get protein from other sources, like nuts, beans and even vegetable protein powder. If you're on a tight budget, I would recommend making shakes with silken tofu and peanut butter + protein powder because it's not too expensive. You can get protein powder on Amazon or at any GNC or probably any health food store. We blend our shakes in a nutribullet.
The protein powder my husband used was called Visalus. It's a little on the pricier side but was totally worth it the first time Jake got sick. He drank the shakes regularly in late 2011 when he developed cirrhosis the first time, and made an incredible (and quick) recovery. This was before we even knew anything about the Berkson Protocol, Antioxidant Water, Aloe Vera Juice, Probiotics, etc. so basically all he did was take these two products (the vitamins and the shakes). I think the vitamins worked so well for him because they were able to get nutrition into his body like nothing else. The supplements were designed to be highly absorbable.
The supplements also put him in a good mood, gave him better sleep, and after he took them he no longer got migraines (which he used to get regularly).
If you're at a high risk for Hepatic Encephalopathy, talk to your doctor about getting a prescription for LACTULOSE. You could crash and total your car, without it.
If your husband or loved one has liver disease and fibrosis, and your doctor has told you that you are a candidate for Hepatic Encephalopathy, you need to make sure that you have lactulose ON HAND, at ALL TIMES (unless you have found something else that could work just as well). I still can't believe that no doctor prescribed my husband Lactulose in advance. It was more like, "You may want to watch out for the onset of confusion... if he gets that, let us know." I mean... great. Jake totaled his car! He could have killed himself, or someone else. Why did they not insist we get lactulose, months in advance, as a preventive measure???
When he left the house in the morning, I was still in bed. He had been mumbling something about taking his daughter to school but I was groggy and didn't quite understand what he was saying. I didn't think much of it, figuring I wasn't understanding him because I was barely awake. He kissed me goodbye and left. I realize now, that could have easily been the last time he ever kissed me goodbye. Only in retrospect, I have learned that it was not safe for him to drive, in the condition he was in. He could have died behind the wheel. I heard another story by a woman I talked to after I learned about the water... she told me her boyfriend crashed into a children's school bus on the first day of school! How is it that not all doctors prescribe this medication for every person with cirrhosis, or at least let them know about it???
On Saturday, the day he was released from the hospital, Jake seemed healthier and more clear-minded than I'd seen him in a long time - he was even clearer than when he was released from the hospital in December, just about a week before.
I had a discussion with him about the fact that the pharmacy would not have lactulose available until Monday. I asked him if he would like me to pick it up at another pharmacy, and he said he felt really good and believed that he would be fine until Monday, and he couldn't imagine that, after all the treatments he just got in the hospital, that he would develop another episode of encephalopathy.
Who would think that would happen...right? I mean, what are the odds?
Well... guess what. Jake decided to eat red meat again, the same day he got home from the hospital. Leftovers. He ate the same exact thing that put him in the hospital the first time. Oh, yes, he did.... right after I went to bed!!! My eyes must have been as big as saucers when I went into the kitchen and saw reheated spaghetti and meat sauce on the stove!!!
Can I just take a moment to speak to all the wives out there who have husbands with cirrhosis, and say, if you are having moments where you are going to want to scream into a pillow, because you can't actually grab your husband and shake some damn sense into him .... I can relate.
It never occurred to me that I needed to tell Jake, "PLEASE, do not eat any more red meat." Maybe I should have said it to him right in his ear, with a megaphone.
I guess it was just an oversight on my part that he'd somehow know better since we wouldn't have any lactulose until Monday. It didn't occur to me that I should go through the fridge and start dumping every trace of meat into a trash bag, because he'd actually EAT IT.
UPDATE: One thing you need to keep in mind, when your husband is borderline encephalopathic, is, he's not going to be thinking clearly. So looking back at it, I realize I probably shouldn't have expected him NOT to eat the red meat (I had to learn from this mistake and I hope you will, too). A fully grown adult can mentally start to act like a small child who needs to be told over and over again, what to do and what NOT to do... so please keep this in mind. If your husband is at risk... it's like you have to "baby proof" the whole house!
We had planned to watch the playoffs on Sunday, with the 49ers' last chance to get into the Super Bowl... but Jake wasn't feeling well. To my surprise, he just wanted to sleep in bed, and had no interest in getting up to watch the game. In the afternoon, I checked on him, found him standing in the bathroom, looking completely confused, in a semi catatonic state, and... I won't get too descriptive here but.... I'll just say he had lost control of his bowels.
Oh SH*T.... I thought... BOB IS BACK!!!
I raced to CVS to get the prescription for Lactulose, hoping it would help him get back to a normal state if I just gave it to him in time. Jake stood like a zombie, hunched over and in a completely catatonic state in our hallway for about 20 minutes... I was surprised he didn't fall over. I actually propped up my camera to film him standing there, so that later he could see what I was talking about, knowing he'd have no memory of it. I had to piggyback him into the living room, in order to get him to sit on the couch, and then sit on his lap in order to get him to take the lactulose. Luckily he took it (it took half an hour to give it to him with a plastic syringe), but he looked terribly sick.
I called a friend over, to give me a second opinion on whether I should take him to the hospital again, or hope that the lactulose would kick in at some point and he'd be OK. Yes, I actually considered letting him "sleep it off!" I wasn't worried about him getting brain damage or having low oxygen, because the first time he was in the hospital, I was VERY concerned about his oxygen levels, and kept asking them to put an oxygen mask on him, and they kept telling me he's fine, his oxygen level is actually very good and he didn't need it.
So this time, I thought h e was probably ok and wasn't too worried.... but I should have been. THANK GOD my friend advised me to take him to the hospital (luckily her husband was able to help me transport him there). This time around, when they measured Jake's oxygen levels, they were very low. I shudder to think that I could have let him stay at home, and he could have wound up with really bad brain damage! So please know that, if your husband develops encephalopathy, you need to get him to the hospital ASAP because unless you have your own oxygen monitor or machine, you are running the risk that your husband is going to lose oxygen and therefore, develop brain damage!
OK now here is something I think it is very important to mention...
If you are someone with alcoholic induced cirrhosis who is reading this, I want to DRIVE THIS POINT HOME:
You CANNOT, AND SHOULD NOT expect the person taking care of you, to be able to do every single thing that is going to help you live through cirrhosis or a bout with hepatic encephalopathy. You need to make critical decisions for yourself, because it's YOUR life on the line, and ultimately, you are the person who put yourself in this position. Your wife/husband/spouse/partner/caretaker can only do so much, and believe me, if they have spent months already taking care of you while you have cirrhosis, they are going to be TIRED, and most likely suffering from fatigue themselves, so it's very likely that some things ARE going to slip through the cracks!
If you don't want to wind up with brain damage from hepatic encephalopathy, you need to take your own preventive measures to ensure that never happens. Remember, PREVENTION IS THE KEY. Stop drinking alcohol, join AA and get help as soon as possible, stay away from red meat, eat healthy, and start taking good care of yourself as soon as possible. Your life is your own, and it's YOUR responsibility to take care of yourself.
If I had "let" Jack stay at home and sleep it off, he could have developed brain damage, and I would have not only had to live with the guilt of letting it happen, but I would have had to take of him in this vegetative state!
That is totally NOT FAIR to the person taking care of you. You need to take responsibility for your own life, and get help, and not let yourself get to this point, where you can no longer take care of yourself or make decisions for yourself. Your wife does not HAVE to take care of you. Getting cancer or some kind of disease, when you have been responsible and made an effort to take care of your health, is one thing. But being irresponsible and not taking care of your health and then expecting someone else to take care of you is COMPLETELY UNFAIR to the other person. SO DON'T DO IT... and if you DO do it, don't be surprised if they eventually decide to leave you. Luckily I really do deeply love my husband.... but I'd be lying if I said divorce or separation wasn't something that crossed my mind - a LOT - as my frustration grew every day.
Let me repeat, again, this important information from TheLiverDoctor.com:
The cirrhotic liver cannot handle large amounts of concentrated protein at one time and for this reason minimize the consumption of red meat and poultry. If you eat too much animal protein, ammonia levels will build up in the blood stream causing fatigue and mental confusion.
In other words, Encephalopathy.
The nurse Jake had in the hospital, to give him his lactulose enema (and then slap a ginormous diaper on him) was the meanest lady we had run into in our "tour of hospitals" over the last month. Honestly, every person we had encountered thus far had been at least moderately polite and pleasant. But this gal was a really miserable person, and she was being a little rough with Jake.
A part of me thought I should try to defend and protect my husband and ask her to be nicer to him. But then I thought, heck, if it was MY job to give someone (who got sick because of alcohol abuse) a lactulose enema, turn their bodies over (as they fought you), wipe poop off their adult butts, clean them up and slap huge diaper on them... it's a miracle if she doesn't go to the bar after work every day to forget what she just had to do. I realized how grateful I was that she was doing this job at all. Even if she was a miserable person to deal with....who wouldn't be, doing that job??? She must want to punch people and say, what is wrong with you, you idiot? Get your s*** together and stop drinking!!!
So... in recap...
If you or a loved one come down with cirrhosis of the liver, you need to make sure you stay away from red meat, and also, ASK YOUR DOCTOR FOR LACTULOSE ahead of time. You don't want to get caught without it. If your doctor says "watch out for confusion" that is not enough. By then it may be too late. If it's a weekend your only option will be to go to the emergency room and you're going to be stuck with a huge bill. Ask your doctor to give you a prescription for lactulose so you can just have it on hand in the event that your spouse needs it, and talk to your spouse about the fact that, if he is starting to feel tired and out of it, he is going to have to take it in that stage, because once your spouse starts developing encephalopathy, it's too late! It's like they will have turned into a different, uncooperative person and you're not going to be able to get them to do what you say!!! This will mean that you're going to have to ask for help, and if you end up having to call 911, there's a good chance fire trucks will also show up at the house, which means all the neighbors are going to be peeking out the windows, wondering what's going on, and my guess is YOU DO NOT WANT THAT.
Please... learn from our mistakes! Always remember, PREVENTION IS THE BEST CURE.