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Posted 3/22/2011 2:21 PM (GMT 0)
. I am Judy, 58, and I  have NASH, which developed into cirrhosis before they found it. So my liver is very involved. Up until now I've had some cognitive problems, confusion, forgetfulness, etc. but yesterday I couldn’t recall what year it was, today I thought it was fall??    My husband immediately reassured me and helped me get through it.  He is very 'can't find a work"  supportive.  and is  pretty up to date things,but even then he doesn’t go through what I do. Sometimes I feel senile. I would appreciate hearing from someone that knows what I am talking about , or has a loved one that has been through it.   Thanks.   Judy Post Edited By Moderator (hep93) : 3/22/2011 11:57:21 AM (GMT-6)
Posted 3/22/2011 5:55 PM (GMT 0)

Hi, Judyinky, and welcome to the forum.  Are you on Lactulose to clear your head?  What meds are you on?  You are fortunate to have a supportive husband.  We don't have many people on here with fatty liver disease, but maybe someone will see your post who has experience with it.  Regardless, liver disease is liver disease and we can offer you support.  Be sure to read the info in the folder at the top of the page entitled Hepatitis Resources.  It covers liver disease in general, not just viral hepatitis.

Do you know the cause of your NASH?  Have you developed cirrhosis?  The more information you give us, the more we can help you.

I changed the title of your post so you can get more replies.

Hugs,

Connie


Posted 3/22/2011 7:30 PM (GMT 0)
I just realized that I left out half of  the post. Not sure how I did that, lol, but was checking the spelling on Word.. Guess I erased it.

 At first I went to a GI doctor for elevated liver enzymes and he evaluated it as Auto Immune Hepatitis, mostly because I had other auto immune problems and so much scarring on my liver.  I decided right away that I needed to see a Hep. doctor.

He says from the looks of the biopsy that it is Non Alcoholic SH,I can't spell the other words, sorry.  He says it had advanced into cirrhosis. I have no idea how I got NASH, but the GI doctor treated me for AIH with high doses of prednisone which kept the enzymes down. It was at that time that I decided to go to my Hep.

The Hep. doctor weaned me off of the pred.. He does have me on a medication.Xifaxan. I couldn't take the liquid medication.

 I do have one of the best Hep. doctors in the country here at University of Louisville, ( a teaching hospital) and I believe what he says. I think  the the GI doctor was guessing. At any rate and for whatever purposes, I do have cirrhosis, which is now causing me to have these problems with my memory, etc.. from the Encephalopathy. and excessive fatigue. and I just wanted to post on here to get support.  

Maybe I wrote to the wrong group. You said you changed my heading.

I just wanted to know if anyone else has these symptoms. I know they are part of it, but I am pretty depressed about it   I have read and read about liver disease and I guess I should be prepared, but don't seem to be. I know he told me that if I didn't lose weight I would be on a transplant list. They scared me. I'm trying, but eating seems to be an outlet for the stress.

Thanks.

Judy

 

Posted 3/22/2011 7:55 PM (GMT 0)
Judy, a lot of folks have posted about the encephalopathy. There is a "search" feature on the tool bar and you then get a list of posts about a specific topic or thread. My hubby has bad bouts of it and says he can't really remembeer anything since 2003! Like where he left his hearing aids 20 minutes ago! He used to be a computer help desk consultant, but he gets confused using his own PC now. It is rough for him, says he wants to throw his PC and his cell phone in the pond as "they don't work for shi***" (if you get my meaning). Of course, he can't remember how they work sometimes and then sometimes he does. It is a day to day thing.

Good luck. We believe the Xifaxan is wonderful. He doesn't remember much more, but he isn't angry or beligerant or mean any more!

Carol
Posted 3/22/2011 8:13 PM (GMT 0)
Judy, I changed your heading for clarity.  I didn't even know what your original title ("heap") meant.  I noticed you started another thread, which is okay...but you really didn't need to.  You could've just posted the link on this thread.

Obesity is one of the causes of NASH and fatty liver disease.  The difference between the two is that fatty liver is not serious while NASH means there is inflammation which can progress to scarring (cirrhosis), and may lead to a liver transplant.  So losing weight is important, as well as eating a healthful diet, and of course NO ALCOHOL.  Cirrhosis is not reversible, but it can be stopped in its tracks or at least the progression can be slowed down considerably, by eating the right things (no beef, low salt diet with fresh fruits and veggies.)

Xifaxan is an antibiotic that prevents dangerous bacteria in the GI system.  It is often given with Lactulose.

Basically, baby your liver and take very good care of yourself.

Hugs,

Connie

Posted 3/23/2011 12:17 AM (GMT 0)
Thanks for all the good information. I'm not sure how I headed the post. I can't remember, but thanks for changing it to make sense. Yeah, I'm up on NASH, just having a hard time letting go of my food crutch. I am about 50lb. overweight and I do well for awhile and then I give in. Guess we are all like that.

Thanks to everyone that wrote.

Judy
Posted 3/23/2011 12:44 AM (GMT 0)
This is going to sound harsh. If you are stressed now, think how stressed you'll be when your liver keeps getting worse. Lose the weight! I read about people in this forum that won't stop drinking and refuse to face facts. You have a chance to stop the degradation of your liver; or not. I am not sympathetic to a problem that could be alleviated by your own actions.
Posted 3/23/2011 1:05 AM (GMT 0)
Hi Judy!

I have giant cell(also known as infantile) hepatitis. I was diagnosed in 1990 at the age of 29. My hep doctors told me I had autoimmune hepatitis and put me on prednisone. I still take 5mg daily.

I moved from New Jersey to Chicago in 1992 and was put under thhe care of a gastroenterologist. He referred me to a hep doctor in 2004. I had another biopsy and then was told that I never had autoimmune hepatitis, but giant cell hepatitis has caused some cirrhosis.

In late 2007, I was let go by my employer after 7 years of service. While trying to phone interview for a new position, I had trouble remembering things. I went to my internist, and thought I was not my normal self. She ordered an ammonia test, and my level was 400. I was immediately admitted to the hospital in March 2008 and put on lactulose. My hep doctor explained I had symptoms of mental encephalopathy and referred me to the transplant center. In six months, I lost my job and thought I was losing my marbles. I had always prided myself for graduating summa cum laude from a
n Ivy League college, having a Master's Degree, and being a twenty year plus museum professional. I was devastated.

I was assigned a new hep doctor by the center, and he put me on Xifaxan. I thought it was to replace the lactulose so I stopped taking it. (I hated being in the bathroom all day). I started making list of things I did not want to forget and gave up on reading long articles and books. My ultimate low came in September 2010 after having fallen 3 times. This forum informed me that I should take the lactulose and Xifaxan together, and my doctors got me on 1-4 tablespoons per day. My brain fog cleared, and my mental attitude greatly improved.

Now, It is still a day to day struggle. I keep a pad of paper by me to jot down notes I want to make sure to remember. My husband leaves me a list of things I can do if I am feeling up to it. Most of my day is scheduling medical procedures, updating my health insurance binder, and caring for our 14 year old dachshund, Honey. This year I did the tax organizer for our accountant. It was a real accomplishment for me.

But, the docs still will not let me drive!

So at meld 16, I wait for the eventual transplant.

Susie
Posted 3/23/2011 10:53 PM (GMT 0)

Judy,

NASH doesn't necessarily have a root cause but obesity is a risk.  So since you do indeed have NASH and are overweight, working hard at trying to lose some of it would probably help you out.  There is no treatment for NASH except for a transplant but they can treat your symptoms.  You said you're on Xifaxan but couldn't take the liquid medication.  Are you referring to Lactulose?  From everything I have learned from others on this board, Lactulose (however vile the taste is) will help with your encephalopathy. 

I understand binge eating/eating for emotion but like David said...there are others here who had to stop drinking because it was so bad for their livers and those who choose not to.  You don't have alcohol as a crutch but your eating crutch is just as bad for you (and anyone with a liver disorder).

idea  So maybe think about it this way...if you need some kind of crutch to help you deal with having a serious, chronic illness...how about making healthy eating and exercise your crutch?  Instead of heading to the kitchen for a snack, grab a bottle of water and go outside for a walk where you can't eat something.  You'll see, that'll deter you cool .  Then as a reward, have a treat once a week so you don't deprive yourself to the point of binging.  Or if you are strong willed enough eventually, have one small bitesized piece of candy daily and keep fresh fruits and veggies around for snack attacks.  I am a bonefide chocoholic so I totally understand but I limit and know that gaining any weight will put me at risk for fatty liver and I need to keep my liver happy.

Making sure you do all you can for your liver will possibly help slow progression and when the time comes that you need a transplant, will make your surgery that much safer that you are healthier and thinner.

Please don't shy away from needing this support group and understand that even the tough love you get here is because of concern people have for those who may not totally understand what's best for them.

Posted 3/23/2011 11:26 PM (GMT 0)
Judy,
Losing weight is hard...I know because I've had a weight problem all my life...My Mom was a wonderful cook growing up and well, old habits die hard...Then finally, I got it...I lost 50 lbs and have kept it off for 3 years now...I didn't diet or starve myself, I simply changed the way I eat. Here's some tips to share.
1. Drink water...drink lots of water...Forget the soda because they're filled with sugar not to mention the caffeine.
2. Instead of chips, buy roasted unsalted almonds, or unsalted peanuts in the shell...Nuts are naturally good for you, loaded with good carbs, fiber, AND most importantly they fill you up. Can't eat the whole bag at once, but a small handful when you get a hunger pain will do the trick
3. Keep your favorite fruits and vegs cut up in the fridge in plastic containers ready to eat! They're handy for snack food and give you no excuse NOT to eat them.
4. Try to grill, or bake you meats and TRY to eat mostly chicken, turkey, and fish...They are so much better for you with lower cholesterol and have lots of omega-3 fatty acids in them which are good for your heart.
5. Try to get some kind of exercise...no matter what it is...something is better than nothing at al. Walking is something most everyone can manage
6. If you have to have chocolate, buy the low fat frozen fudge bars, chocolate cheerios, or chocolate fiber bars. If you have to have the real fattening chocolate, then buy the baby chocolate bars and just eat ONE. you'll be amazed at how your taste buds will be satisfied with just that little bit....
7. Reduce your calories and you will reduce your weight. And by all means, try to avoid fast food...If you have to grab something quick, try a subway, grilled wrap, or grilled chicken sandwich.
All the little things you try to avoid will add up to a big loss!


You can do it! Find what works for you and just stick with it. I'm rooting for you!
Posted 3/24/2011 1:32 PM (GMT 0)
Hi All,

Thanks for all the good tips about weight. I needed it.  I was on a low carb diet when I was taking prednisone, and I've going to get back on it.  .  I get stubborn sometimes about eating and think I am entitled, but I know that is no excuse. 

Iam going to do what I did while on the prednisone when the GI doctor thought it was AIH. My blood sugar went up and I had prednisone induced diabetes which has since gone away after lowering the prednisone I had the died  down pat and was actually losing weight on prednisone which is rare since it made me as hungry as a bear.  I have to watch the nuts and things though. I have diverticulitis and some they found polyops yesterday when I had a colonoscopy. I've been having stomach problems. .

Susie,

Thanks for sharing your story. It helped me a lot.  I'm not in this alone  and I know that now. I'm glad you have a supportive husband too.  I'm encouraged to hear that you "got your mind back" as I call it, from all the brain fog. And have read your post over and over.

 I'm going to talk to my doctor and will try the  Xifaxan with Lactulose, and see if he recommends it. I. I have only been off the 5 mg which was what I had been on for a long time, and need to have blood work done to see how high my liver enzymes are.  Seems like every time I would get down to 2-3 milligrams they would spike, but my doctor wanted me to try to get off the prednisone 

I'm going to go now. Please keep writing. I look forward to getting the posts. I'm not eating any bread today, so as to start to wean myself off the carbs. and only diet soda and what's good for me.   I know the route and am going to get back on the road.

Thanks again. OH, Is there a spell check on the posting page. I can't seem to find it. There is an abc , which usually means it will spell check, but it is marked out. There are a lot of words that I have forgotten to spell

.

Thanks again, and excuse me if I have written things twice. I haven't gotten my mind back.

Judy

 

 

Posted 3/24/2011 7:37 PM (GMT 0)
Judy, no spell check, but we do have a Medical Terms list stickied at the top, to which I have added some "regular" words.

Hugs,

Connie

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