Tag: hepatic encephalopathy

Protein, Ammonia, Cirrhosis, and Hepatic Encephalopathy: What I Learned

My last post, “Hepatic Encephalopathy: On Knowing I Didn’t Know What I Knew I Know,” ended with me trying to cope with an episode of confusion, temporary loss of lifelong memories and inability to form new ones a week following the installation of a Transjugular Intrahepatic Portosystemic Shunt (TIPS) to deal with the portal hypertension resulting from cirrhosis, a consequence of Primary Biliary Cirrhosis (or Cholangitis) (Regular readers will be used to the growing “This is the house that Jack built” nature of my introductory sentences.).

I believe I have regained all I had lost of my memory. The treatment was (and continues to be as a preventive) an extreme laxative called Lactulose that “works by drawing ammonia from the blood into the colon where it is removed from the body.” It is a sickeningly sweet liquid that makes my intestines feel as if they’ve been invaded by frolicsome ferrets, but this transient discomfort is trivial compared to the frightful alternative of hepatic encephalopathy.

After the TIPS was installed, I was told to avoid fried food and red meat and I complied (by the way, pork is not “the other white meat” when it comes to ammonia: it is a red meat). However, because of the events of the two weeks preceding my encephalopathy (days at the nursing home, my mother’s death, 300 mile each way trip to UAB, two endoscopies with conscious sedation, general anesthesia with the TIPS, etc.) I had become very irregular, backed up as it were.  I was not getting food processed and through my digestive system efficiently, and certainly not quickly (now the Lactulose helps with that).

My understanding of why I should avoid red meat and eat small amounts of protein over the course of the day rather than in two or three sessions was slow in coming.

After release from the hospital, my family and I started a hunt for low-ammonia foods. No luck — just try to find the low ammonia diet. There are horrifying stories about “pink slime” and the use of ammonia to control e coli in food processing plants (remember that? The “pink slime” Wikipedia entry hasn’t been updated since 2013, which doesn’t mean the stuff isn’t still around.). Red meats and rind cheeses were listed as items to avoid if you suffer from cirrhosis, but there wasn’t a clear indication of why. Finally, I contacted a food scientist I knew who provided the key.

I was not going to find low ammonia foods. Ammonia is a by-product of the breakdown of proteins, whether they be animal or plant-based. The thing is, red meats and rind cheeses (and to a lesser extent, chicken and fish) are more protein-intensive than vegetable-based proteins, so more ammonia is produced during their digestion.

For most people this isn’t a problem. The liver takes care of the problem, as it handles other toxins consumed.

But a cirrhotic liver isn’t up to the task. Think of all the drug labels and commercials that tell you to consult with your doctor before using if you have an impaired liver.

Red meat should contain a similar warning.

From the 1950s (at least) into the first years of this century, cirrhotics who had experienced hepatic encephalopathy [HE] were told to eat little protein, period, and malnourishment was common among cirrhotics. As their bodies consumed their own muscle and fat for protein, ammonia was released, and thus HE was not avoided by not eating meat.

Now the advice is for cirrhotics to consume more protein than than non-cirrhotics, and I have been told that while it is most important to get enough protein — to eat chicken and fish if I need to — non-animal sources of protein are less of a challenge to my liver. I am still looking for studies on whether vegetarian or vegan diets are superior for preventing HE in contrast to those that include some animal protein. If it were possible to eliminate the need for Lactolose or rifiximin (an antibiotic used to prevent HE), I would go vegan.

It was easier to give up red meat than I would have imagined. Back when severe anemia was one of my major issues,  I was a staunch defender of meat-eating, arguing that for some of us, a vegetarian diet was not an option, that we couldn’t otherwise get the iron needed to raise our hemoglobin from the 8’s to the 12’s without transfusions or infusions. And I still think that universal vegetarianism isn’t practical, unless you want to require all who live in regions inhospitable to agriculture to eat processed foods shipped in from other climes (are there any Sami, Inuits, or Eskimo thriving on locally-produced vegetarian foods?).

Now I eat far less chicken and fish; they don’t dominate the plate but are supplements to the grains and vegetables, and I eat them only a few times a week. I eat a lot of beans and rice, oatmeal, grains. No fast food — and I don’t miss that at all.

There’s a relief to being forced to do what I’ve known for a long time I should do but have been too lazy to bother doing.

So far, I’ve had no more problems with HE. There are other theories about what causes hepatic encephalopathy, but the prevailing one is that when the liver can’t handle the ammonia that is a by-product of protein digestion, the ammonia crosses the blood-brain barrier, and the brain becomes a sink for this noxious toxin.

Still, it is amazing to me that cirrhosis has been recognized as a disease for hundreds of years and yet so many questions remain about its treatment and effects, but I suspect that may be because it is largely linked to alcoholism, and the stigma of cirrhosis as a lifestyle and avoidable disease.

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Hepatic Encephalopathy: On Knowing I Didn’t Know What I Knew I Know

This post assumes you’ve read the two preceding ones: “My 13th — and Perhaps Final — Portal Hypertension Bleed” and “In Which a Transjugular Intrahepatic Portosystemic Shunt (TIPS) Is Installed in My Liver.” This post is my subjective, and given the subject, patchy account of a few dreadful days. I will share what I later learned about hepatic encephalopathy in a future post.

For well over half a century, I’ve known the answer to the question: What is your birthday?

Even when I was missing my four front teeth and saying “December twenty-six” was a twister, I could answer that question: It’s the day after Christmas.

On July 23, 2015, one week after my TIPS procedure, I couldn’t find the answer. I knew I knew it, and that knowing—that is, knowing this was happening—that I had lost a nearly lifelong memory—was horrifying.

I was suffering from hepatic encephalopathy.

My liver could not handle the ammonia it normally filtered, the ammonia had crossed the blood-brain barrier, and I was unable to make new memories or access information long stored and always before easily within reach.

I left the hospital Sunday, July 19, 2015. The installation of my Transjugular Intrahepatic Portosystemic Shunt (TIPS) was deemed a success. My portal hypertension, which was 15 (dangerously high) when the radiologists began the procedure, had dropped to a normal range of 2-4. At first my liver function numbers were all over the place, but that was to be expected. My ammonia levels were high, but had steadily dropped. My digestive system seemed to have woken up from the general anesthesia. I complained of constipation, but I did have a bm.

I know that Monday I slept all day, and I expect I did on Tuesday and Wednesday as well. I had had a rough two weeks.

The first weirdness was  pre-dawn Thursday. I could not get warm. I like a cold room when I sleep, and keep a lot of covers handy year-round. But I could not warm up.

At some point Thursday morning my husband noticed I wasn’t making sense when he asked if I wanted anything to eat or drink. I was somnolent, very hard to rouse. I have no memory of this.

He told me he called my primary care physician and gastroenterologist. It was only a few days later that I remembered anything at all about having been at the GI’s. Leaving the house, I walked right past a huge display of flowers that had arrived that morning from my brother: I had no memory of them when my husband mentioned them later.

I have a vague memory of either getting into or out of the car at the doctor’s, of looking up and seeing my daughter had joined us in the consulting room, and of sitting in the room (I guess that I wasn’t lying down because they didn’t want me to sleep). I’m told that the physician’s assistant offered to send us along with a prescription for Lactolose, a strong laxative which I’ll discuss in the next post, but since my husband and daughter wouldn’t have known what to do if I didn’t respond to this drug or what to expect or danger signs, they—I believe quite rightly—chose to take me down the street to the ER.

I have no memory of getting there or of the usual procedures (and I’ve been in the ER enough to know), like signing in, waiting in the first waiting room area, going to the triage nurse, and having vitals taken. I do remember being in the second waiting area, and I guess all the action had woken me up enough so that I realized what was happening.

Hepatic encephalopathy is the complication of a TIPs I feared the most because it involves your ability to think and remember. At its worst, it can lead to coma, sometimes reversible, sometimes not.

To the other people in the waiting room, I must have looked fine – no ice packs, bandages, vomit bag, etc. But each moment that passed I believed I was closer to losing my mind. At some point I must have asked for a DNR (Do Not Resuscitate) bracelet because much later I noticed I was wearing a purple bracelet I’d never seen before.

At some point—an hour? two?—I was taken back into the examining area.

After a while, I said to my husband, aren’t they going to do anything? They haven’t even started an IV. They always start IVs. He said, look at your hand.

I looked down, and saw I had an IV. I in fact had what I’ll call a double-barreled I on the back of my hand—a painful place for a stick—and I am one of those people with small veins that roll, etc.

Was I too somnolent to feel an IV going in? Did I feel it but was unable to remember having felt it? Was I, in other words, unable to form new memories?

Then came the questions.

  • What is your phone number? I hadn’t a clue.
  • What is your birthday? I know this, I do, I know this. I couldn’t find it.
  • What month is it? 12?
  • Try again. 6?

How strange. I have this very vivid memory of not knowing these answers.

(Later it occurred to me that the oddness of my response – 12, 6 – rather than the names of the months was because I was still searching for my birthday (12/26) and could not make the leap to the new question. My phone number I simply had to relearn, and it took til Sunday morning before I got it right routinely.)

The rest of Thursday is vague to me. I don’t know if I had anything to eat that day. I can’t tell you if it was day or night when I got into a room. This might not seem unusual, except that here going from the ER to the in-patient hospital requires an ambulance ride across a street. But I remember being able to get from the gurney to my bed without help.

Then it was Friday. I remember very little of it until the evening. Then it was time to start trying to figure out what had happened.