CIRRHOSIS OF MY LIVER AND HEPATIC ENCEPHALOPATHY

[harmundo]

I HAVE BOTH OF THESE ISSUES I MENTIONED IN THE TITLE. I TAKE XIFAXAN 550 MLG 2 TIMES A DAY.
TO CONTROL THE ENCEPHLOPATHY, BUT I've BEEN  HAVING A LOT OF IRRITABILITY AND ANGER AND
SOME RAGE. IF I MENTION MY YOUNGER BROTHER DANNY I GET ANGRY .BOTH OF MY BROTHERS ARE
MAD AND NOT  TALKING TO ME ANYMORE. WHAT CAN BE DONE FOR THIS/ AN INCREASE IN MEDICATION? OR WHAT? I NEED A DOCTOR TO TELL ME WHAT I SHOULD DO.!!!!!!!!!!!!!!!!!!!!!!!!!!!
                                                                                                                             THANK-YOU
                                                                                                                 DAVID A HARMON SR.

[nan535]

Hi David

You haven't posted in a while.  Just wondering how things are going for you.

Nan

[nan535]

David
    The type of doctor I was referring to is a hepatologist, not a hemotologist (doctor that specializes in blood diseases).
A hepatologist is a liver specialist. Your symptoms of end stage liver disease are all serious and can be potentially life threatening.  Do you have esophageal and/or stomach varices? These are enlarged veins in the walls of the lower part of the esophagus (the tube that connects your throat to your stomach) that bleed.  Scarring (cirrhosis) of the liver is the most common cause of esophageal varices. This scarring reduces blood flowing through the liver. As a result, more blood flows through the veins of the esophagus. These varices would need to be banded if they bleed.

This is why I suggested that you be treated by a hepatologist.  You should be treated by a doctor that specializes in treating these symptoms. I am not in any way underestimating the abilities of your current doctors, just suggesting you add another who specializes in dealing with end stage liver disease.

Thank you to both of you for your kind invitation to correspond through email. As a member of this site you can send me a private message though My Med Help. I would also like to suggest you join the Cirrhosis of the Liver community where you will see many posts from others who have advanced liver disease.
May God bless and guide you in your next steps.
Nan

[harmundo]

Hello Nan,
      How are you/ how's your husband doing? I hope well on both counts. I'm so sorry that I didn't get to respond back to you yesterday but I was really busy.In response to your message, yes I truly agree with you that
I should be seen more often than every six months. yes the Geisinger  Medical Center does have a place called transplant. I'm also being seen by a Hematologist once a year named Dr. Gorak. yes My primary care Physician Dr. Lewis told me that I do have end stage liver disease. Nan, I'd like to extend an offer to you. from my wife Carol and I. She's read a lot of the comments that you wrote back to me and she said to give her our regular E-Mail address and see if she would want to send E-Mails to us and
if we had yours we could do the same. Carol is concerned about your husband's health as well. She said that's terrible about your husband's new liver having cirrhosis too. Nan this is entirely up to you. I'll give you our E-MAIL address If you wish to E-mail us please feel free if not then that's okay too. Carol and I would completely understand. Tell your husband that Carol and I David said hello to keep battling and don't ever give up the fight.!!!!!!!!!!!!  d.c.***@****. Again Nan God Bless you and your husband always. May the Lord give you and your husband all of his strength and love each and everyday. Nan, please keep us posted about your husband's health and well being. Please write back okay?
                                                                                       FROM
                                                                    DAVID AND CAROL HARMON

[nan535]

Thank you for your very kind prayer for us. It is much appreciated.
Sorry you have had a tough road leading up to getting cirrhosis.
I checked out your doctor online  and it looks like his specialty is internal medicine. The reason I checked is with all of your symptoms (ascites, edema, HE,)   you likely have end stage liver disease and should probably  be seen more often than every six months. (I am basing this on my husband's experience).  The hospital you are in does have a transplant program. Is there not a hepatologist who is overseeing your care along with this doctor.

Just wondering...
Nan

[harmundo]

Hello Nan,
      Yes I do have to deal with ascites and edema. I'm also anemic as well as borderline diabetic.  I got my cirrhosis from a Cancer surgery to remove a cancerous neo endocrine tumor outside the pancreas. that was in December of 2003. I had to have 30 radiation treatments in 2004 done. in and around the year of 2010, I was told that I had a fatty liver. I was never placed on a diet to lose weight. then at the end of 2012, I had a test done where they drew some fluid out of my liver area. I was called and told that I had a liver infection I was admitted to the hospital. After that  the first three months of 2013, I was a very sick man. Lots of nausea and vomiting. They put me on meds for nausea but that only made it a lot worse. I vomited a lot and very often when I would smell food or look at it to eat.I went from 252 pounds back to 180 lbs.I was in the emergency room a lot as well as the Hospital. By April of 2013 my situation I was in had stopped and I started to feel some better. To this day I still get my good days and bad days.!!!!!!!!!!!!!!!!!! Nan please answer me back okay? I've learned a lot from you. thank-you so very much for that. I truly appreciate that. I'm so sorry to  hear that your husband's second liver getting the virus in it causing him to have cirrhosis of his liver again.!!!!!!!!!!  I truly hope that things can work out for  both of you. My prayers will always be with you and your husband. God Bless you always Nan. Nay God strength and his steadfast love surround you both each and every day. Again I truly hope that your husband can be that virus that is causing him cirrhosis all over again.
                                                                                Sincerely
                                                                          David A Harmon Sr.
P.S.
Nan, please keep in touch.!!!!!!!!!!!!!!!!!!!!

[nan535]

I have heard of Kristalose though not personally familiar with it. The point is to make sure you have at least 2-3 bowel movements a day in order to clear the toxins from your system. The sodium limitation is to try to limit the amount of fluid your retain. Do you have ascites (fluid in your abdomen?) Swollen legs
and ankles are signs of edema.  
     The "number' you refer to is called the MELD score (Model of End Stage Liver Disease).  It is determined by  a specific mathematical formula using your lab results on any given day. The three results used are that of your serum billirubin, INR,  and serum creatanine.
     The resulting number can be between 6 and 40. The higher the number the more advanced your liver disease and the higher the risk of mortality in the next three months.  Your number of 12-13 is on the lower side meaning your risk of mortality in the next three months is low (6%). Read some more here:   http://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease
      
      What was the cause of your cirrhosis?   My husband contracted Hep C from a blood transfusion in 1979 and found out he had cirrhosis in 2010.
He had a transplant in 2012 but unfortunately the virus has attacked his new liver and he has cirrhosis again. He is now on treatment to finally rid himself of the virus.  
     You should do everything you can to protect your present liver function.
My advice is get back on your diet and follow your doctor's orders.  NO alcohol at all (not even a beer).  
    Best of luck to you.  Yes, I think its a good idea to call your liver specialist and talk things over with him.  

Nan

[harmundo]

NAN,
      Thank-you for the advice you gave to me. I take  Kristalose  not Lactulose. by doctors orders, they told me to take 3 packets of Kristalose with each meal. Plus I take a tablespoon Miralax as well so that's 9 packets of kristalose a day and 3 cap fulls of Miralax a day. the xifaxan 550 mg caplets I take morning and night. or 2 a day. yes I do have a liver specialist that I see at the Geisinger Medical Center in Danville Pa. his name is now don't laugh Doctor Waseem Butt.I see him every six months. the last visit in March everything looked good he said. that my number for a possible transplant list was about 12 to 13. he said if it goes up in the high 20's or especially the 30's then they would definitely purt me on a transplant list. he's a very thorough doctor. He even has me get ultrasounds on my liver checking for tumors or cancer. so far they've come  out negative which is good. in fact when I get done writing to you . I'm going to sent my liver specialist and my primary care physician Dr. Lewis and tell them what is going on. With me.!!!!!!!!!!!!!!! Again Nan thank -you so much for your advice. Please respond to me about this post that I replied to you please I do need your help about what I've written back to you. I'm on a 2000 sodium intake in a day. and 1200 mls of liquid per day. I'm on a heart healthy diet.I've been doing pretty well in the beginning but for a long time I haven't I've been very bad and have been cheating very badly. It's so hard for me to get back to that diet once again. I've really been spoiled eating everything that I can with low or no sodium added I know in my heart that I shouldn't be doing this, again it's so tough to get back on that diet again. God bless you always Nan
                                                                                  From
                                                                         David A Harmon Sr.

[nan535]

I'm not a doctor but I am the caregiver of my husband who has had both of these conditions for three and a half years on and off.

As you probably already know, David, hepatic encephalopathy is one of the symptoms of advanced liver disease.  For others who may be reading this post - here is a link to a summary of the signs and symptoms:  http://www.xifaxan550.com/about-hepatic-encephalopathy/symptoms-stages

Xifaxin is prescribed to help relieve these symptoms. Are you also taking lactulose?  My husband takes a 30 ml dose twice a day. Lactulose does not cure the problem, but may help to improve mental status. Lactulose is a colonic acidifier that works by decreasing the amount of ammonia in the blood. It is a man-made sugar solution.

Diet is also very important in controlling HE.  My husband does not eat red meat as it is difficult to digest, resulting in more toxins in his bloodstream.
He eats chicken and fish. He also eats beans. He eats 5 smaller meals rather than 3 big meals.

Your mood is affected by these toxins. HE makes you more irritable and can add to your anger.  I would suggest you find a support group where you talk with others who understand what you are going through.

Are you being seen by a hepatologist (liver specialist)?  Have you been evaluated for a liver  transplant?

You may also want to post on the Cirrhosis of the Liver community.

Best of luck to you.  Hope some of this information is helpful to you. I know first hand how difficult life is for you right now.
Nan