First time posting - liver cancer, hepatitis c & hepatice encephalopathy

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Tron
New Member


Date Joined Apr 2016
Total Posts : 1
   Posted 4/25/2016 11:51 PM (GMT -7)   

Hello everyone 👋🏼 This is my first time posting from Australia so bare with me.

My dad is 59 years old and has had hepatitis C most of his adult life. He was diagnosed with primary liver cancer which was in the early stages in July 2013.. He was not eligible for a transplant or surgery as his liver was already very damaged. He then went through 4 courses of chemotherapy and 6 courses of radiotherapy with many bumps along the way he has now been in remission for a few months which is fantastic. He was involved in a clinical trial for his hepatitis C which he is now cured as well. As well as all of this was going on he also had varescies in his stomach, two seizures and was diagnosed with type 2 diabetes.
I have now found out he may have hepatic encephalopathy..
Now I was just hoping someone that may have been through something similar to this could help me understand it a bit more as its all a bit much for me to understand and take in. I live 3 hours from him and my mum passed in January 2013 so I'm just worried that I could lose him.. Any information on any of these things would be a great help to me and my dad.

Thank you in advance!

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2072
   Posted 4/26/2016 5:31 PM (GMT -7)   
Tron, Welcome to HW. Encephalopathy is a result of toxins building up in the body. These toxins normally get handled by our livers when it's functioning properly. Ammonia is the main culprit toxin. The toxins build up and eventually get into the brain. That causes issues such as balance, erratic temper swings, Stupor and in some cases if not dealt with properly can lead to a comma.

Rifaxin and Lactulose need to be administered to bring the ammonia levels down. Not sure if these drugs are the same name in oz ,but research both of these meds on the web and see what's available in your country.


Ziff
"The truth will set you free, but not before it pisses you off."

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4803
   Posted 4/26/2016 6:57 PM (GMT -7)   
Tron,

Welcome to Healing Well. WE are a group of patients, caregivers and loved ones of those affected by various types of liver disease.

It sounds like your father has had a rough go. And his case sounds like my partner, Mike....except that Mike's cancer situation was much less extreme...his tumor was found when he was well on his way to getting a liver transplant and when diagnosed with hepatocellular carcinoma, it moved him up on the UNOS list and he was transplanted within 3 months.

Mike is 67 years old, had Hep C from about age 19 or 20. He was also a drinking man..no busting up bars, getting in fights, or arrests for drunk driving. Just a peaceful sort of fellow who liked his beer, wine, and mixed drinks....every single day. Hep C can do a liver in all by itself, and so can alcohol, but together they make a deadly mix. Mike had cirrhosis of the liver and was failing on us fast.

He had all kinds of symptoms of what they call End Stage Liver Disease here, ESLD. He had extra fluids in his legs....from his feet to his testes (edema). Some get fluid in the belly (ascites) that can be drained in a medical setting. Both can be very uncomfortable. Many suffer from Hepatic Encephalopathy (HE) that Ziff has described well. Some get a lot of pressure on the flow of blood coming out of the liver which is why you can have a bleed in the stomach or esophagus. Such bleeds can be life threatening. Developing diabetes at this point is also not unusual. Mike did too. He was insulin dependent before and after his transplant, but has not continued with that. Each symptom can be relieved with medications...HE as above, Edema with "water pills", and the pressure on the blood with Blood Pressure medicine. Mike had trouble keeping his electrolytes balanced and went to hospital about once a month when he got bad for potassium, albumin, sodium, etc IV drips and after a few days he came home until the next time.

When Mike got his new liver May 1st 2011, he still had the Hep C as he could not take the Interferon and Ribavirin and was waiting for "new meds" to be available. So he damaged his new liver. He took the treatment in 2014 and so we are hoping his new liver can build new cells since he did not have cirrhosis again, thank goodness. All the symptoms of ESLD left with Mike's old liver. And he has amnesia about his almost 2 years with HE. Lucky him..only unfortunately I remember how cranky, grumpy and unreasonable he was. That was hard on loved ones.

I don't know what the transplant rules are in Australia, but here you cannot get a transplant if your tumor is more than 5 cm (or collections of tumors). And so maybe it is too late for that even if he is in remission. the triage the donor livers so carefully and those with extensive tumors do not do as well post transplant...so.....

For him the key will be to get his symptoms as under control as much as possible so he can live the rest of his life comfortably, hopefully for many years. I hope he is not drinking any alcoholic beverages, that could be a problem. They recommend a low salt diet (to avoid the fluid build up as much as possible.) Lots of fruits and veggies. Some meats are harder to digest and they recommend no or limited beef and other red meats. Fish, chicken are preferred easier to digest with a failing liver. And lots of fluids....water, juice, etc.

If you have questions, just pop in. We have several who post regularly who have had or are waiting for transplants, some who are caregivers of those with liver cancer. My comoderator lost her partner to the disease a few years ago...hep C and cancer...but they fought bravely. Both of them.

My final words will be about down the line. Some in ESLD need help as they get sicker as their HE makes daily tasks, driving, keeping the checkbook, etc. difficult. You may need to think of a plan for if/when that happens.

Best to you and your loved ones,

Mama Lama from Florida
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 460
   Posted 4/29/2016 4:26 PM (GMT -7)   
Thor:
Be willing to get more help for dad. I have been on this forum for more than 10 years, time of ESLD diagnosis. Anyway here I sit just waiting, and now so concerned by your dad being alone. I have had encephalopathy. More than once. I was surprised I acted so unreal. I don't know what I would have done had I been alone. My husband has always there for me.
I hope someone will be there for you, You can get plenenty of help right here . I will send best wish , many prayers. Keep in touch
lav

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 460
   Posted 4/29/2016 4:28 PM (GMT -7)   
Thor:
Be willing to get more help for dad. I have been on this forum for more than 10 years, time of ESLD diagnosis. Anyway here I sit just waiting, and now so concerned by your dad being alone. I have had encephalopathy. More than once. I was surprised I acted so unreal. I don't know what I would have done had I been alone. My husband has always there for me.
I hope someone will be there for you, You can get plenenty of help right here . I will send best wish , many prayers. Keep in touch
lav
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