Caregivers Sharing Thread - renewed #3

Natty-found this quote from NY Times Health Guide:

"Lactulose may be given to prevent intestinal bacteria from creating ammonia, and as a laxative to remove blood from the intestines. Neomycin may also be used to reduce ammonia production by intestinal bacteria. Rifaximin, a new antibiotic, is also effective in hepatic encephalopathy."

I think the antibiotic kills the intestinal bacteria.

http://health.nytimes.com/health/guides/disease/hepatic-encephalopathy/overview.html

Trying to add link to the article. Hope this provides useful information.

Emma

PS...don't know how to add a clickable link.  Can one of the moderators help?

Post Edited By Moderator (hep93) : 6/22/2011 2:11:43 PM (GMT-6)

They are adding 2 other antibiotics to her today. They think she may have infection in her fluid in her stomach and may have lseions on her intestines. I think it is always something new with this disease.

Shellshocked, I had to start limiting everything I buy. If it is a canned good, she doesnt want to get into it as much but if it is in the fridge, or a bag, she wants it. My mother in law doesnt become enraged, but he becomes like a little child. Very uncontrollable. Not that she is much better while in her right mind.

You can double his lactulose as needed and I would talk to his doctor about increasing it. My mother in law takes 4 tablespoons 4 times a day. She also takes Neomycin 2 times a day. It seems to help her a lot.

Natalie

hi to all, thanks for your replies and concern. the docs have said the bleeding after the b.m's is from piles and trauma from going so much. they did find some darker blood in there also though and believe he has had a small vairiceal bleed. they sent him home with the promise of a follow up appointment for an endoscopy procedure but the wait is around 6-12 weeks.
advice was if it happens again, straight back to the hospital and they will perform an ogd there and then.
good news, he got through this and has not had a drink,,,,,,,,,,,,,fingers crossed,
xxnatasha.xx

Shellshocked (and Emma), the food is replacing the booze.  If it's not bad things he is eating, I wouldn't hassle him about it.  It's more important to make sure he doesn't drink again.  Check out Walmart for lower prices on yogurt.  If you have a Walgreen's near you, they often have a sale on Jello or Royal gelatin with a coupon in their ad section...usually 3 for $1 (used to be 4, but now everything is going up) or .59 ea.  That's when I stock up, though I get the S.F. kind (same price.)

Natasha, good that he will be getting an endoscopy, but sorry it is such a long wait.

Emma, that should be a clickable link now.

Hugs,

Connie

Connie - he isn't an alcoholic, he never drank much and when he was told the Glucophage he took for his Diabetes was having an impact on his liver, he never really drank again - just a a glass of wine with dinner at Christmas, etc.

He's normally really good about controlling his eating from having had Diabetes for so long, but now he is very childish (Natalie - he's the same in that he doesn't want to put any effort into what he eats, just grabs the easy stuff from the pantry or fridge) and bingeing at night. He is 6'2 and started at about 225 average weight. He came home at 222 after being diuresed of over 75 pounds of fluid, and I've been following the nutritional plan to the letter, and he is now about 212. His ideal weight is supposed about 175, which is where I want him, or as close as is reasonable when the transplant evaluation begins. I think it's the lighter nature of the food overall - Promise Light, not butter; whole grain sandwich thins instead of white bread; no snacks or ice cream; lots of fruits, greens, veg, and cottage cheese, light yogurt, etc.

We always ate pretty healthy, but I like to cook and used butter, salt, animal proteins, things that are okay in moderation unless your liver is compromised. I don't mind the lighter diet, I think it's actually pretty good - but I think he's not feeling as full as he likes, and I think I might also be a control thing - he's really angry at the regimentation and answering to nurses and docs on a daily basis.

I hit Sam's Club today and stocked up, then put some things where he can grab them and hid others to try and keep him from eating 10 yogurts a day, etc. I'm going to try and make the meals a little more substantial and see if that holds him over a little better.

My main concern is money honestly, he's been sick for months and we own our business. I am really budgeting right now.

On a slightly optimistic note... I doubled his Lactulose doses, he just took number three - and he's not 100%, but he IS much better I think. I hope it continues to improve over the next few days - as frustrating as it is, I feel really bad for him.

A suggestion, get rid of the fake butter and use canola or olive oil. Also, keep munchies such as carrot sticks around to eat. I realize that there is natural sugar in carrots and many fruits and veggies, but they're filling and good for you.

Connie,
If you think you're fudging on food now, because after a transplant you'll not be able to. Well, that's only for the first 3-4 months. With a functional liver there aren't many things (other than raw proteins) you can't eat. It's an entire new life.

My husband was on the Neomycin the reason he went off of it is because one of the side effects can be hearing loss. My husband was on is for years and it worked great but my husband started to loss his hearing and I don't think it was from the medication.

Also on the Xifaxan if you don't have Medicare D then they have some programs that can help with the medication you might want to call Salix the manufacturer and ask them. As for the Medicaid at one time you could tell them there is an emergency situation and they could speed things up especially if the doctor is behind it....you might check into that. We don't have medicaid so I am not up to date on things and it seems like the rules change every time you turn around.

From my point of view it is an emergency if there behavior is a case where he can hurt himself or others.

bump

RE Xifaxan and Medicaid.

In December Mike was prescribed Xifaxan.  FL Medicaid denied.

I wrote a letter and talked to a case worker.

My letter pointed out that Xifaxan reduced HE hospitalizations 85%...so which did they want to pay for?  A pill or a bed?

And End Stage Liver Disease is exactly that...the end, final, stage...and to deny medication to a dying man during his final weeks or months, to deny him a more comfortable passage seemed inhumane!!!!!!!!

Mike got his meds in less than a week.

And he got his transplant before his final day!  But either way, they don't have to pay for it any more!!!!! (Thank goodness it worked out.)

Now we just have to keep him good for a while.

Carol

I have to rant for a few moments...

When my husband became ill, he stopped drinking. I stopped drinking too. This was to support my husband. We are a team. We have made it very clear to all of our family and friends that we both do not drink anymore. We do not serve alcohol or have any alcohol in our home. If we have folks for dinner, they need to BYOB and take home any leftovers.

I have a friend, (soon not to be friend). We have been friends for almost 30 years. She and I had dinner a couple of months into husband's illness. When I didn't have a drink with dinner and told her I don't drink anymore, she wanted to know why not. "He has the problem, not you."

A few months after that, husband and I had dinner with her and her husband. Again, a snarky remark from her. Her husband however, was telling my guy, that he would not be drinking this evening in support of him.

Husband and I are getting ready to go on vacation, to a destination that she has recently been to. I asked her for last minute trip advice. She told me to be sure to try all of the local wines. This really pissed me off. I am steaming. I reminded her that I do not drink. She told me that sparkly water would work, but not be as good. Ack.

What is wrong with this woman?

Thanks for letting me vent.

Emma

Most people aren't going to get it. I write a column (14 years) for our local newspaper. After my transplant, my column dealt with what had gone on and how my life was changed. For example, I had to wear a mask out in public for 3 months and couldn't hug, shake hands or kiss anyone. People would come up to me, having read my words and try to hug me or shake my hand. I'd remind them about no touching. Most of them would say "It's all right, I'm not sick." They weren't unfeeling, just clueless. The "friend" that won't let up about drinking sounds as if she's afraid to lose you as a friend if you're not drinking alongside her. At least her husband gets it. I would be straight with her and tell her that if she wants to remain a friend, stop the drinking talk. Many people can't conceive of not drinking, it's so ingrained in our culture. RC, tough stuff. Obviously she wasn't a true friend. If I've learned nothing else from the past 10 years, it's that you learn who your true friends are. Most people don't want others to know they have Hep C or liver disease. As soon as I became aware of mine, I wrote a column for the paper describing my situation. Most folks were fine and many asked for more information about it. Others didn't know me from then on. Last note; after the transplant, people would ask me if I could have a drink, now having a new liver. My reply was simple, "Yeah, I'd like to do that. Then I could have a transplant every few years."

I come from a long line of alcoholics.......I know but by the grace of God.....I didn't walk down that path.......I do have a drink every now and then but mostly I just say no. A couple of my family members try to pressure me to drink even though they know I would rather not. I think it's a matter of misery loves company......like Natalie said....they think that anyone who is not drinking is thinking bad about them. Or maybe it's them thinking bad about themselves. When they pressure me to drink......I pressure them to stop drinking......then they leave it alone.
I do try to educate them on what they are doing to their liver.......and should they get cirrhosis that it's not a pretty disease. I go into all the gory details. You can lead a horse to water ......but you can not force him to drink or not in this case. Or should it be a mule????

As far as your friend Emma. I just think that alcohol plays a big part of her life. My brother and sister-in-law had the emergency sirens go off while they were at a wedding in Indiana. (Tornado warning) My sister-law grabbed her glass of wine and the bottle of wine before heading to a safer area. She was laughing when she told us the story.........they do not get it. I wanted to cry for her.

Thoughts and prayers.........