This is an article I wrote in 2013. I'm re-posting in hopes that it will help others who may be dealing with End Stage Liver Disease and its many complications. Hepatic encephalopathy is frequently misunderstood, because until you have lived with it (as a patient or as a caregiver), you probably have no idea that such a thing exists. It's a long read, but in the absence of other information sources, I hope this will enlighten you if you or your loved one is dealing with this ...
p.s. I received a life-saving liver transplant on June 2, 2015, and was cured of Hepatitis C a year later. Life is good, my health is good, and I no longer have to deal with HE. I can only hope that others have as good a result as I have ...
My name is Dan, I’m HepC positive which has led to stage IV ESLD. I’ve been on the transplant list for three years now, originally listed in San Francisco, now in Tampa, FL. In August of ’09 my MELD was at 29. Through careful management, I’ve been fairly stable for most of the last three years with my MELD ranging from 14- 17. It did spike to 23 while passing a kidney stone, but it dropped back to 16 soon thereafter. I’m currently at 17.
I’ve been through most of the complications of ESLD. My varices have burst and I went ‘code blue’ as a result (flatlined). I’ve experienced edema, ascites, pruritis, multiple paracentesis procedures (10-12 liters of fluid removed from my abdomen every 7-10 days), a TIPS procedure (Trans-jugular, Interhepatic, Portal Shunt), and four comas due to severe hepatic encephalopathy, plus other small issues.
A couple of people here have asked me to share my knowledge of HE, because I’ve been pretty successful in controlling it, and I’d like to share what has worked for me. Please note that I am not a doctor. I am simply a patient. Each of us has a different experience. Much of this info has come to me through careful observation, management, common sense, and speaking with other patients. It’s not been confirmed by scientific research and controlled studies. It’s simply what I think has helped me control HE. If you suffer from HE, I hope this can help you, too.
I’m assuming you have some knowledge of liver disease, so although I’ll slow down at times, I assume you’ll be able to follow along. If not, drop me a note and I’ll fill in any details (MELD, ESLD, lactulose, rifaxamine, etc) you’re not familiar with. So, here we go. Strap yourself in and enjoy the rocket ride . . .
First, let me put your mind at ease about HE. In and of itself, it IS NOT life threatening. For that reason, it does not figure into the calculation of our MELD scores. However, forgetting our meds due to HE CAN be life threatening. Driving when in the throes of HE can be life threatening, not just for us patients, but for passengers and other drivers on the road.
Of course, the embarrassment due to some of our often-strange actions is not fun. Finally, the anguish it can cause our caregivers can put a real strain on our most meaningful relationships, which we depend upon for our continued survival.
HE is characterized by a high level of ammonia, particularly in our brains.
After my bleeding episode, I opted to undergo a TIPS procedure. I didn’t want to do it until the doctor put it to me something like this: by having the TIPS procedure I would increase the likelihood and severity of HE, but it would almost eliminate varices and the quick death associated with them bursting. I chose life over a little goofiness. Little did I know that for me, it’s a short bout of goofiness followed by a precipitous drop into a coma. However, knowing now what I do, I would opt for the TIPS again.
Photo: I was called for transplant four times. The first three times, I knew I was the alternate, in case the primary candidate had last-minute complications. The fourth call, I received a liver transplant on June 2, 2015.
Upon my discharge, I was malnourished. My once trim 185 pounds had ballooned to 250 when the edema and ascites began, and shrank to 160 by the time I was discharged. I met with the nutritionist who told me the best way to regain my muscle was to eat protein, and lots of it. 125 to 150 grams of protein a day was her recommendation. Meat has 7 grams of protein per ounce, so that’s a lot of meat, plus cheese, plus beans, and eggs, and Ensure, and protein shakes, and high-protein cereal, etc. etc.
The other reason for eating protein is that protein helps with albumin production which is what draws fluids into the intestines to be eliminated, thereby helping reduce (along with a low-salt diet) the fluid retention.
What they didn’t tell me is that the by-product of protein digestion is . . . AMMONIA!!