New to this forum

Well, I have now read most of this forum and I don't see where things will ever be back to "normal." I cried for the first time today. I feel like I'm travelling through those "grief" stages, albeit, he is still alive. I think I'm going through losing what I think we used to have and may never have again. On the other had, I feel like a whiner.

Hi, Hortonsbks, and welcome to the forum.  I would also suggest that you read the info in the folder at the top of the page entitled Hepatitis Resources.  There is a lot of good information in there.

Is your hubby on Lactulose?  Most liver disease patients who exhibit strange behavior or are very confused are placed on this med...sometimes with Xifaxan as well.  You can increase the Lactulose dosage if his behavior or confusion gets worse.

You can also get a lot of information by reading the posts.  If your husband drinks alcohol, he needs to stop.  However, since he has been listed for transplant I'm sure they've gone over that.  Has he ever received treatment for hep C?  I also contracted it in the late 60s and have had liver cancer as a result--but I'm still here.  I do have a lot of fatigue and sleep about 12 hours a night.  That's a common denominator in liver patients.  I set the clock and force myself to get up, or I probably could sleep 14-16 hours.

Diet is also important.  Sometimes they don't mention it, but he should NOT eat beef.  It's the most difficult protein for the liver.  A diseased liver is already working overtime, so you don't want to stress it out even more with beef.  Lots of fresh or frozen fruits and veggies are also good.  Keep him on a very low-salt diet.

At this point, you can only deal with his symptoms.  The above  mentioned are some ways to do it.

Also check out the Caregivers Sharing thread stickied at the top of the page.  You will find support there.

Hugs,

Connie

Hi Pat. I am Carol. Also in Florida. There are a lot of posts on this forum that talk about the change your lives are taking.

I could relate so much to what you were saying. My hubby was a computer consultant and now he can't figure out his own computer. We have to hire a guy! Can you believe it?

He has days when he is clueless and days when he seems good. Like today, there was a big deal about going shopping for low sodium pasta sauce as he wanted spaghetti for dinner. I took him to his AA meeting at noon (he isn to supposed to drive, becuase he was acting crazy) and on the way home he says to me, so what do you think we should have for supper? Like we never talked about it.

Though he started down this ESLD path 40 years ago, he continued to drink alcohol until September 2010. So he really accelerated his decline. He has stopped and must stay stopped to keep his place on the transplant list. He goes to AA 4-6 times a week...to get on and stay on a list.

Most days I feel like you do, like I have lost him alreay, but he is still here, pretty helpless a lot of the time. And with transplantation I may have him with me for some years.

But now that he is taking both lactulose and xifaxin for the mental state he is doing much much better. and with all the other stuff...diuretics for edema/ascites, beta blocker for the portal hypertension, etc etc he is more normal than he has been in some time...at least 8 months. Not his old self for sure. But..

We have some semblance of normal here. He is 61 and I am 65. We are retired now.

In October the hep doc told Mike he'd be lucky to see Christmas, that was how bad he was. Three hospitalizations, a lot of meds, and NO BOOZE and Mike's liver is working, a little tiny bit. No more brown urine. Fewer crazy episodes. Less rage.

We are so careful with his diet...no red meat, low sodium, low fat, small meals. And that is really helping. about a month ago he had a hankering for steak and insisted we go to one of the chain steak houses. I convinced him to have a salad with sliced meat on top, not a whole steak, and to tell them not to put the seasoning on in the kitchen (salt salt salt). It took him 3 days to get over the tummy ache after that. He won't do it again. Trust me.

Mike still sleeps a lot. In bed at 8:30 for at least 10 or 11 hours. He is restless and gets up often to pee or take a lap around the living room. He naps an hour in the mornign before AA at noon. And generall 2 - 3 hours in the afternoon...bed naps. So 14-16 hours of sleep a day. But he seems cheerful in between. Not as crazy as before. He isn't screaming at me every second. And seems to have settled into a routine.

The only way I have survived so far is to quit doing anything outside the house I once did (for now). I was active on several volunteer boards, newsletter editor, IT coordinator and co-web master, and was treasurer of one. Not now. I can't count on being available and can't have all that homework. I help when I can, but it didn't work. The second I needed to go to a meeting, there was a crisis here. While I was still trying to balance it all, I was too squeezed to function.

I still go to the gym three mornings. I HAVE to do that or go insane. I went back to my book group after missing 5 months. And until there is another crisis, I think I can read ONE book a month!

Settling into a new "normal" will take some adjustment. We are here for you. Come often, share. Until I found this site, I felt like the lone ranger.

Carol aka Mama Lama

Thanks for responding. Bob has never been a drinker. So, that isn't the issue. He didn't take the Interferon treatment for years because he didn't want to be sick, albeit I encouraged him to do so. Then, when he considered it, they said his platelets were too low. So, we are where we are. He has been put on the list, but considered not sick enough to be near the top according to the MELD score.  We live in St. Pete, but he's been seeing the doctors at LifeLink (the transplant guys) in Tampa for about a year. They kept telling him that he wasn't sick enough to be on the list. However, after this second bleed-out, they swarmed and said he was now on the list, but still not sick enough.

I don't understand about the Lactulose. That's the red liquid stuff he is now taking. Are you saying that we can increase that to help him stop the bizarre behavior? Unlike others, he is in no pain. He said today when he woke up that he also knows that his behavior is bizarre. He also has edema in his ankles now and I have no idea what that means.

Look, we've known he's had this for years. But, we went from perfectly normal stuff with Bob working at the aerospace company to a second bleed-out to immediately to all this junk. Everyone here seems so well informed, while I feel like a complete idiot and ready to check myself into an insane asylum in two and a half short weeks.

NO BEEF?  First time I've ever heard that, including from the Lifelink Transplant guys. I knew about low sodium so we've been on that together for years.

He'd been diagnosed with Hep-C for twenty years and hasn't had a drink.

He actually has no other medical issues, but I figure this is enough.

He is currently on 10 gm/15ML of lactulose 3 times a day. Can that be safely increased and, if so, to what?

Pat

 

Thanks, Connie, for all your information. I will try four times a day, since we seem to have nothing left to lose. This is sudden since we've known about Hep C for decades. Last summer, he suddenly had a bleed-out here in St. Pete.  It quit and they simply sent him home and back to work. I don't give a flip at this point. Here is the guy who writes the manuals on how to fly the US Navy and US Air Force planes. I don't give a flip, because he had to have a Top Secrecy clearance to do what he does. He has a masters from Purdue. On the other hand, I now have back, after this last hospitalization, a husband who is wandering around the garage at midnight.

But, I must say there a few things that have really ticked me off. First of all, when he had the bleed-out in St. Pete last summer, they simply mentioned there was a shunt procedure, but that no one in St. Pete actuallly did that and he should simply go back to work. So, he did. Next up, he goes this month to work over a bridge to Tampa and throws up gallons of blood at work. He is taken to Tampa General and they did the shunt deal. I send my husband off to work one morning and never get him back sane again.  So, I am going though all those grief stages. I am angry. I cry all day. Then, I am also very much a realist and realize that we are now, suddenly, in a very different place. Now, I don't get that from doctors, but from myself. I know this guy. They send him home, believe it or not, saying he can probably resume his life soon, including going back as an aerospace engineer. YOU'VE GOT TO BE KIDDING ME!!!  I now have a husband who is staggering around and sleeping 18 hours a day and acting like he's mentally ill. Resume his job as an aerospace engineer???? I don't think so!!!

I'm also well educated. I'm also a realist. All I want is honest answers I can deal with.

What I don't get is how they can't be honest with me and not just simply throw the realism in my face. Instead, they are like...oh, he might go back to work soon. BULL-CRAPPY! And, he's already on the list for transplant.

Meanwhile, we're home here and exhausted. We see him sleep most of the day and then we're up worrying about him all night. Last night, he was in the garage at midnight looking for boxes. At two AM, he was trying to cook oatmeal on a gas stove. Good God almighty! One day, I'm told that he might be an engineer in a few days, and the next thing I know I'm thrown into this!

Thank God I looked at this forum. That's all I can say. Thank God I looked at this forum.

He is taking it, Michael Kelly. I've never even heard of beetroot juice? Where do you buy that????

It's Michael Kelly again sweetie, after reading my previous post to you I may have been a bit brash, If I was I'm sincerely sorry. You may call beetroot ...silverbeet over there as well .You should find it in the supermarket 'trust me it works.
Wishing you all the best for you and your man ,Lord knows I know it's hard,
Karen

Hi Hortonsbks,
I know how you feel. When my husband was first diagnosed with cirrhosis I was pretty much in shock. I knew something wasn't right but had no idea we were to that point. He was diagnosed in Sept 2010, but I know for a fact he has had it much longer...My husband falls victim to alcoholic cirrhosis, and has stopped drinking, and then started back, and then stopped...etc.........it never ends...Whatever the reason you are here, you are in the right place. I no longer cry like you said, for lack of knowing what else to do....Instead I come here to vent, fuss, complain, or just ask questions...Feel free to do the same...Somebody will have an answer for you..I no longer feel alone and I don't think you will either.
Hope this helps you as much as it has me!
Always remember, as I have been told so many times here...take care of YOU as well or you are no good to him..And ask questions any time you need to!
Take Care!!!

Hello Hortonsbks, and welcome to HealingWell. Sorry that your husband has this awful disease. As you see there are plenty of others who are in your shoes or have been there.

Check out our educational thread in Resource folder at the top of our forum. It has lot's of good information in it.

Beef protein is too hard for a damaged liver to process......most patients who are ESLD have bouts of encephalopathy after eating beef...my husband did every single time.....Doctors won't tell you that probably because it hasn't been scientifically proven.

In fact most doctors don't tell the patients/families half of what they should know to fight this disease. I can honestly say that I learned or confirmed 90% of what I now know about liver disease from this forum. Every member brings their experiences to the table and we compare notes and learn from each other.

We also have a caregiver's thread at the top of our forum. It just for venting or talking about things that are affecting you and how to deal with it.

Again welcome to HealingWell........so glad you found us......thoughts and prayers.........

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