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Oh, the places I've been ... I'm lucky to be HERE!

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 ...


Brother Dan

www.brotherdanpalmer.com

#liveradvocate #beadonor #musicheals


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 ...


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September, 2013


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 . . .

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 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.

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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!!

Well, no wonder I was back in the hospital in a coma that lasted for 3 ½ days, less than a week after my discharge, especially since the TIPS allows blood to pass on through my liver, unfiltered, which in turn increases the toxins in my bloodstream (including ammonia).

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You can probably see this coming, but the prescribed remedy was to increase my intake of lactulose, and to make sure that I took my rifaxamine (aka xifaxine) without fail. I think most of us know the results of taking lactulose.

So, to make this long story a bit shorter, I gradually (and always with the knowledge of my doctors) cut back on my protein intake. First, to 100 – 125 grams a day, which was still too much for me. Then, 85 – 95 grams a day. Finally, I discovered that 65 – 85 grams a day is about right for my bodyweight and activity level.

Then, I began to be able to titrate my lactulose from 35ml three times a day downward. I now take 25 – 30 ml of lactulose once a day. I normally take it immediately after my second meal, which always includes protein.

At first, the doctors wanted me to have five bowel movements a day, then four. Now, three is normal for me. Occasionally two, sometimes four, but most days three.

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I can almost hear some of you asking, “well why not eat even less protein?” That’s an interesting part of the picture.

First, remember, the protein is needed to draw the fluids out of your abdomen. Second, we need protein to keep our muscles from wasting away. But the part that seems to be overlooked is the third point: lactulose bonds to protein!! That’s why I take it after I’ve eaten a meal that contains protein.


For me, my previously healthy diet (four ounces of meat once or sometimes twice a day, plus lots of fruits, vegetables, and legumes) does not provide me enough protein to accomplish any of the three things I’m trying to achieve. Fluids begin to build up in my feet first, then my muscles waste away, even as my ammonia levels begin to rise. If you are vegetarian, it’s even more difficult to get enough protein.

If you don’t get enough protein, you can drink lactulose by the bottle-ful and all it’s going to do is make you spend all your time within two or three steps of the nearest bathroom, or worse yet, in diapers. I know people who’ve been there, done that. They ate lots of pasta, veggies, fruits, etc, but the lactulose could not do its work because of the lack of protein.

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Finally, to control my HE, I require frequent


and at times nearly constant observation. Hopefully, your caregiver is familiar enough with it to ask you questions, the answers to which can warn of an oncoming episode. “Stop the bus” is an easy physical test to check for signs. They need to be on the lookout for yourspeech and general thought processes slowing down, for you searching for wordsthat you can’t quite seem to find, and other things that can be easily observed.

If you start to exhibit those signs, you DO need to drink extra lactulose. I've received lactulose enemas while in ICU in order to get me out of a coma. In my case, a bowel movement will pull me out of the darkness, even if I’m completely blacked out. I regain consciousness almost immediately.

Of course, it’s better never to go that far. There’s no scarier feeling than to wake up intubated, feeding tube in your nose, restrained, etc, so I advise you to doall you can to avoid the descent into blackness. I’ve been pulled back from theedge of coma more than once simply because my caregiver was tuned into me and what’s going on. I don’t usually want to take lactulose at that point, but I’velearned to trust my caregiver implicitly.

Finally, if you begin to fall into that hole (of course, you won’t realize you’ve falleninto it until later), your caregiver MUST NOT try to manage you alone. Theyshould not try to get you into the car and drive you to the hospital. As patients, we can become irrational, combative, delusional, etc. Your caregiver must know to CALL 911. The EMT’s that respond know how to handle things, and they are your caregiver’s best friend at that point. Make sure your caregiver(s) know thatit’s okay to make that call.

The added benefit of arriving at the hospital in an ambulance is that you will receive immediate attention. You won’t have to sit and wait in line as you descenddeeper and deeper into a coma.

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So, I hope this will at least help you focus on your own situation, your own reactions, your own body and health as you walk this at-times treacherous journey. If you’ve had different experiences or have different ways of coping and avoiding HE, I’d love to hear them. That’s what this crazy and wonderful group is about, helping each other. I may need to know what you know at some point in the perhaps not-too-distant future, so let me know if you have things to add to the conversation.

I wish you peace –

Dan

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