Liver transplant - Let's support each other

I understand how u feel about HE. I feel the same way. Scariest thing that’s ever happened to me

Last fall the Dr. Told a friend that he didn't expect me to live until april. I fooled him its a year later and im still going strong. My meld score went up back in September.

@racing212 I had some similar but I think my maximum hospital stay was 3 day, and I never lost consciousness.
I was out this afternoon and I was thinking about all of this while driving home. I almost got tears in my eyes. To me, HE episodes that made me irrational were the worst thing that ever happened. It was especially disturbing when I realized that I was being irrational.
JK

Well a year ago is when started going to the hospital for weeks and that's when they started lactoluse and xifaxin. I was getting fluid drained from abnomen every week for over a year. I haven't been drained since January of 2019. Im monitored every 3 months by a dr at rochester mayo in minnesota

This has been a fantastic conversation and I want to expand upon it.

For anyone not familiar with hepatic encephalopathy (HE)), it is a buildup of toxins in the brain.
"A liver damaged by cirrhosis isn't able to clear toxins from the blood as well as a healthy liver can. These toxins can then build up in the brain and cause mental confusion and difficulty concentrating. With time, hepatic encephalopathy can progress to unresponsiveness or coma.

Cirrhosis often has no signs or symptoms until liver damage is extensive. When signs and symptoms do occur, they may include:

Fatigue
Easily bleeding or bruising
Loss of appetite
Nausea
Swelling in your legs, feet or ankles (edema)
Weight loss
Itchy skin
Yellow discoloration in the skin and eyes (jaundice)
Fluid accumulation in your abdomen (ascites)
Spiderlike blood vessels on your skin
Redness in the palms of the hands
For women, absent or loss of periods not related to menopause
For men, loss of sex drive, breast enlargement (gynecomastia) or testicular atrophy
Confusion, drowsiness and slurred speech (hepatic encephalopathy) "
https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487
-Were you told about the signs of HE to look for when you were diagnosed with liver disease?
-Were you monitored in any way by your medical care provider?
-What do you wish you would have known then, that you know now?
- What kind of hope and/or encouragement would you share with someone who is new to this conversatioin.

@racing212, @gaylea1, @wildcat, @contentandwell, @jeanne5009, @rowdyramsey, @flagal22, @mostlybill, @tgshomes, and anyone I missed: I hand the mike to you.

I just had an he episode last friday and was in hospital 4 days. Im dont remember friday or Saturday very much. Its not the first that happened a year ago in October when i slept for days and woke up in a different hospital

My HE episodes included confusion, lack of awareness (time, place, situation) dizziness (including falling or fainting), irritability, and fatigue. Combined they made me one hot mess lol...When I had my most severe HE episodes I also lost consciencesness. (sp?).

Hi

I am five years post a very successful liver transplant. I took my awful Lactulose faithfully every day but still had one serious HE episode. It was unforgettable- three days in hospital and fed copious amounts of the stuff. It was dreadful but it worked. I was never given Rifaximin but I'm sure you will be fine if you take both meds faithfully and don't be tempted to miss a dose. I know it is disgusting but it is literally a life saver.

When i was admitted to A & E, the first doctor mis-diagnosed me but as soon as I saw my specialist he told my husband it was HE. He sniffed my face and said he could smell the ammonia! Embarassing, yes, but useful to know. I had no long lasting effects (as far as I know!).

@jeanne5009 Jeanne, from my experience I would have to say "maybe". It's so individual. I was on just xifaxan for almost a year and had no HE episodes at all. Then I suddenly had another one. We thought it was due to "the perfect storm" -- I had a difficult ablation and I had norovirus so was not holding anything down. The hepatologist thought at that point though I should resume taking lactulose along with the xifaxan, that my liver had deteriorated much further. So then I was on both and I did have some full-blown HE episodes. Obviously the hepatologist was correct.

When I had my transplant, about six months later, my liver was pretty much spent. If a liver had not come along at that point I may not have made it. So much depends on your liver's condition. I really do not fully understand how they develop a patient's MELD score but I do know that some very sick people have low scores and some people who seem less sick have high ones. Mine was 28 at transplant.

Also, you ask about the definition of HE. That too varies by the person. I was fine most of the time, completely cognizant and able to live my normal life. Then I would get hit with major confusion, be totally irrational, and sometimes even combative. Some people just have a fog all of the time. It really varies tremendously.

You sound like one of the very fortunate people who are able to have good existence along with having cirrhosis. My sister has a friend whose mother had cirrhosis for 10 years. She eventually died from an unrelated cause.

I had thought xifaxan had come down in cost when it was no longer patent protected. When I was taking it we paid about a $700 a month co-pay.
JK

Can I get some feedback on how we are defining an HE episode? I know
everone is different but I never had a big one and am not sure my feelings
are really HE related. I have been diagnosed with it and am on the meds.
Thanks.