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Posted 11/30/2011 12:18 PM (GMT 0)
The trip to the hepatologist was just that.They have scheduled appointments for  a scope to see his varices and an ultra sound of his liver.

Todays battle is he has decided that since he gets no affects from the lactuose and they will not prescribe pain pills then he is not taking his lactulose.I have told him he doesn't realize how he is acting.It is not a want IT IS A NEED to take it.He is getting unbalanced easily,slurring words and acting  like he will be losing it soon.I can not get him to take his med and I am just waiting for the bottom to drop out

I have no choice but to deal with this and I am shaking in my shoes right now

Posted 11/30/2011 1:32 PM (GMT 0)
I think most patients at one time or another refuse to take the lactolose.  My husband got tired of ending up in the ER, and decided that the lactolose was the better of two evils.  Not to mention, that he finally start seeing the toll that all the ER visits were having on me. 

Hang in there......he will eventually realise just how important it is to his survival. 

Take care..........thoughts and prayers.........

Posted 11/30/2011 5:24 PM (GMT 0)
I got my sister on the phone to talk with our brother before she went to work.This worked this time He went to bed and I will awake him or try for his next dose.His attitude I believe is he has not comprehended his grave situation and also he feels if he cannot get that feeling of out of reality then its not a med he wants.Time will tell.I have Druable Power of Attorney now and know if he loses it completely I can get him medical attention.
Do his part is yet to be seen but heres hoping
Love and Blessings
Alisa
Posted 11/30/2011 7:44 PM (GMT 0)
It seems nearly everyone resists taking Lactulose. Have you tried mixing it in Ginger Ale or juice? Tell him that the doctor wouldn't have prescribed it if he didn't need it. Just keep trying to get it in him--that's all you can do.

Hugs,
Connie
Posted 11/30/2011 8:28 PM (GMT 0)
Alisa,

This is what they told Mike in the hospital.

His ammonia was very high. He was out of his mind. He wouldnt take it.

They told him they were going to administer it one way or the other....through a nasal tube if he preferred...

He preferred it with apple juice.

That whole mess is over for now, because he got his transplant and hasn't needed it!

Being too crazy to take your medicine is a toughie!

If the ammonia gets really really high, they can go into a coma and die.

Fun choices, eh?

I'm sorry.

Mama Lama

Posted 11/30/2011 9:30 PM (GMT 0)
Tell him they can administer lactulose as an enema (true). Maybe that will help change his mind.
Posted 11/30/2011 9:32 PM (GMT 0)
Oooh, I forgot that one.
Posted 11/30/2011 9:42 PM (GMT 0)
Thank You all just for listening!!! I have had to remind hm of dose 2 of 3.Maybe he will tire of my constant reminder and take it just to shut me up.I will now if he is not just by his way of acting when doing without it.I remind him of this too.I am trying to stay calm cool and collected but have found troble in not raising my voice at times.
Hopefully in a few more days he will be able to understand the situation more clearly
Love and Blessings
Alisa
Posted 11/30/2011 9:55 PM (GMT 0)
Alisa, the HE can be awful. One of our members told recently of hubby walking down a highway walking a horse...because the dirt path by the road was too bumpy or tippy...it is a wonder he didn't kill himself and the horse. Mike was making crazy choices before we made him quit driving, and I've heard of cases where the patients went outside nude and couldn't figure out where they were. When a liver quits working right, the patient is in trouble.

They told us in the hospitall that a liver has over 600 jobs to do to make your body work right. Converting food products into chemicals that can keep us alive and healthy. Coverting waste products into chemicals that our kidneys can excrete. Etc Etc. It is a big job and when a liver is decompansating all hell breaks lose.

I'm sorry, Alisa, that he is not making a conscious effort to live. A. Ziffle posts in from time to time and is our poster boy for coming back strong!

Mike went to AA to quit drinking. But the real outcome was that he started in that program convinced he was a bad person, a person who did not deserve to live because he had experimented with hard drugs and was a drinking man all his life..so his cirrhosis was self induced and he should just die.

But his AA program turned him around. He has stayed sober now 15 months and counting BUT. He decided he was a good person, that he could clean up his act, get on a transplant list and LIVE. There were things he wanted to do in his life and he was not going to just give up!

I hope things move in a positve direction there.

Have you considered a support group for YOU. A counselor or something. Because in the end YOU can't MAKE him well. He has to find a scrap of sanity in there and decide to fight.

I hope he does.

Carol
Posted 12/1/2011 12:13 AM (GMT 0)
I have suggested to him to seek counseling.He says he thinks not.I have offered AA and happily attend myself.But to no avail YET.I am a persistant person though and I have suggested a sponsor if not counceling.I am giving him some home time and a few more days to come around. I am hoping that the more sober time the better his thinking and actions will be.I know this for a fact myself.Trusting him away from home on his own when he thinks he can is a frequent concern.There is no alcohol in my home and he has no vehicle or license to drive.His true friends can be counted on one hand with fingers left over.He needs to make friends of a better in fluence at AA.The comradery(?) is exceptional I feel there.
He has insurance through TennCare.So I have told him to use his resources to his advantage.I would if I had the priviledge!!! It just seems to go in one ear and out the other.I will do all I can to continue positive reinforcement in his life.
As for me I am Blessed to make new friends here and others I can share my daily happenings.I am a firm believer in prayer and my faith is strong.Although it could be much stronger.I know I can not heal him.This has been an issue for me all my adult life.I am learning the hard way I am not in control and I can not fix anyone but myself.
Love and Blessings
Alisa
Posted 12/1/2011 2:49 AM (GMT 0)
Alisa,

  So sorry to hear that you are going through this horrible disease as a caretaker.  I have kinda bad news about the lactalose reminder...you may have to do remind him each time.  My hubby, if left on his own for the day will forget to take all of his meds...and he doesn't usually give me a hard time about it.  But he CAN'T REMEMBER.  The day slips away on him and he won't do it.  He will Think about doing it, but he loses focus.  We have been doing this 9 months, so you would think it would stick in his brain, but NO.  This may not be the way with everyone, but the way it is for us.

   At first I was really angry that he wasn't trying to remember, I finally GOT IT.  He really can't help it.  BUT...it took a long time for me to GET IT.  Still gets to me sometimes.

  My hubby was the one walking down the highway with one of our horses.  smhair

   I really hope things go well with your brother and he feels like his life is worth saving.  Hope you are doing for yourself...this is a long haul endeavor.  Take care.  Keep posting.

Angie1953

Posted 12/1/2011 3:43 AM (GMT 0)
Amatt , Lactulose is truly disgusting in every aspect . Unfortunately it is the best thing for getting rid of HE . I remember being woken up at the hospital from a dearly needed peaceful sleep to be given a dose , Gagging , then going back to sleep only to be woken up to a grizzly mess in the bed and more Lactulose after the nurses cleaned me up . Some things about those HE days are so vivid in my mind and others are just tales from my wife and family . I had used mind altering drugs in my late teens and early 20s and HE felt alot like that . Problem is with HE you don't have a choice in taking a " trip " , your already there and you begin to think you may never come " down " . It scared me to death . Pun intended .

Something you mentioned caught my attention " They wont prescribe pain pills so he wont take his lactulose " . Boy , he's in for a rude awakening . Shove his face in the computer monitor for a moment please YOU GOT TWO CHOICES , LIVE OR DIE . Direct and to the point , Take your Lactulose , Do as your doctors tell you because they don't play the pamper the baby game . Throwing fits and demanding drugs will get you one place , Dead . Your sister is the only person who feels pity for you . I care , We care , but do I feel pity ? Nope , and to be sure your doctors feel even less attached than any of us .

Amatt if your brother cares to see what this disease can do I can provide pictures from my own experience , I am a recovering alcoholic with over 3 years sobriety . I have roughly over 10 percent liver function currently and fought like a dog and suffered all the way to get to where I am today . My appearance today shows no physical signs of the hard road I went down but the mental scares are mine for life . Your brother has a chance but he is the ultimate controller of his destiny . I am here if he or you needs it , Good luck to you both .

A. Ziffle
Posted 12/1/2011 12:05 PM (GMT 0)
I look forward each day to get here to talk and read with all of you.It is a not always relief but a guide of getting through.I have saved many informative sites with info for him to read.He has chosen not to right now but it is my hope when his head clears a little more he will do some searching himself.I will leave info on the screen so when he sits down it pops up for anyone to read.Something may catch his eye maybe as I keep doing this.
All of you are such a GREAT HELP for us both.I and he needs you all.A. Ziffle if I set him up an email mail account you could be most informative for him.I would be most grateful for the 2 of you to converse.Maybe coming from any other than me would work better.He is a drug of any that takes him from reality.I don't know about IV drugs as his use ever but swallow or snort or smoke is a choice of his.Drink the feelings away is the most desired.
Today is scope down the throat to check varices(?).The 5th is ultra sound.As long as the appointments are close together I feel it will remind him of the severity of his condition as he continues to remain sober.Hopefully in a week or two he will consider not wanting to repeat this horrible ordeal that he does remember.
There is much GREAT reading here that I want him to read and comprehend.I know it has to be on his time and not mine but I can be a little pushy when need be
Love and Blessings
Alisa
Posted 12/1/2011 12:41 PM (GMT 0)
At first Mike wasn't interested. Then I started casually keeping him up to speed on a particular family...Ron and Pam--Ron's transplant was months before Mike's and the path quite similar.

Just casual...today this or that happened.

Then, when he was having a good day, I would print a thread he might be interested in.

And that is where it has stayed. He has never logged on. Never posted. Never read through the open posts.

But he did start asking questions he wanted to know about...how long are people on the list, how long in the hospital when they get the transplant, etc.

By the time he had his surgery,he had seen pictures of the patients post transplant.

He had seen A. Ziffle's pre and post recovery pictures (no transplant...just a good healthy sobriety)...he is Mike's hero.

He knew about the central line, the varous tubes, the statistics on success of transplant if he got his turn, etc.

Good luck,

Carol
Posted 12/1/2011 2:03 PM (GMT 0)
I want Joe(my brother) to know everything I have found out about his condition.Until he takes time to look into all there is to know I will keep him up to date as to what I have come to know.I wish he would just sit and read posts on HW.I don't want to overload him as I have myself.I just want him to see the basics and start from there.It is in his best interest but he dosn't see it the way I do.Frustrating but staying in the now for me keeps me looking forward to better.
Love and Blessings
Alisa
Posted 12/1/2011 3:53 PM (GMT 0)
Alisa,
My husband doesn't read the forum or google or read about cirrhosis. He says he has me to do that for him. I tell him a bit about what is posted on HW. He has been especially interested in Mike's journey to transplant (MamaLama's hubby). Mike and my husband are the same age and quit drinking on the same day...or within a day or two of each other. I tell my husband many of the gruesome things that will happen to him if he doesn't "keep himself safe"...our code words for stay sober. To help me with all this I see a counselor once a month. When hubby was first diagnosed, she told me that he had to come to grips with not being whole...having something wrong with his body...those kinds of things..just processing the bad news. Maybe that's where your brother is right now.

Emma
Posted 12/1/2011 4:24 PM (GMT 0)
Ron and I made a deal.  When I told him he needed his lactalose - it was his job to take it....PERIOD.  Some days he fought me a little - but he always gave in and took it. 

Here's a link to our blog (it was mentioned in an earlier post) - I hope it helps!

http://ronslivertransplant.blogspot.com/

Together you make a mighty force - we learned that!

Pam and Ron

Ron is 10 months post transplant.

Posted 12/1/2011 5:12 PM (GMT 0)
Alisa, I think your brother first needs to accept that there is something very wrong with his health. When I was diagnosed with hep C in '93 (and had been sober for 7 yrs. at that time, drug free for decades), I went through all the stages of grief: Disbelief, denial, anger, bargaining with God, and finally acceptance. I think this is necessary before one is open to all the information available. I went through the same thing, to a lesser degree, when I learned this past April that I would need a transplant.

Just drop bits and pieces (such as from Ron and Pam's story or info you've found here at HW) in a casual way. Not too much or he will feel overwhelmed and tune out.

Since you are in AA (I believe from your posts), talk to your sponsor about this. Or get some counseling yourself, as Emma has done.

Hugs,
Connie
Posted 12/1/2011 5:18 PM (GMT 0)
Alisa , I sent you and Joe a email so when you get a chance check your inbox . It has been rare that we see male's posting here with ESLD , It's mainly spouses or wives ( Caretakers ) . I can think of a number of reasons men typically don't want to post and I was a bit apprehensive when I started here myself . Once you get over the hump of letting your guard down and understanding that nobody here knows each others personal info it gets to be pretty comfortable in here .

It's not about kicking him when he's down , it's about dealing with the real issues that he faces . There's avid AA members here , People of faith . We have a diverse group with those like me who believes in God but not a churchy person and doesn't attend AA . Mind you , Faith based and AA programs have a proven track record in helping some of us get clean so we can get healthy again but a few have managed to overcome this disease without being heavily involved with either . It's not about your source of transportation as much as it is your ultimate destination . With all that said we can help you to help him as you've found out . Whatever way works best for you all .


A. Ziffle
Posted 12/1/2011 6:46 PM (GMT 0)
Today has been a better day.He is starting to talk more about his current thoughts.He is dealing with depression about everything he says.I have suggested a councelor but he declines.I have told him of my new friends here and he listened.Ultra sound went well.There and back in no time.Now I will stand aside and give him all the space he needs to deal with his thoughts.He knows I am here and maybe when he really wants to talk I am here and the new friends that have come my way are just a word away.As with his wanting detox,he had to ask me to help.I have told him I can not fight his battles for him but assure him I am here when he needs me
Love and Blessings
Alisa
Posted 12/1/2011 7:30 PM (GMT 0)
Hi Alicia,

A couple of books you might want to check out:
Dr. Melissa Palmer's Guide To Hepatitis and Liver Disease - folks on the forum have spoken about this from time to time, but not recently.
also-
First Year: Cirrhosis: An Essential Guide for the Newly Diagnosed

* by
* James L. Dickerson

Not by a doctor, but a patient, going through day by day the first week of his dx, then week by week for the first month, then month by month for the first year. I have both books, and have just read bits through them, but found them helpful.

Emma
Posted 12/1/2011 9:54 PM (GMT 0)
Thank You SO MUCH!!! This will be a great read
Love and Blessings
Alisa
Posted Yesterday 12:36 AM (GMT 0)
your brother is a very lucky man Alicia!! He has you!! the job of caregiver is harder than people think. I can feel the love you have for your brother, and wish you both well.
Sticking to a low sodium. no red meat diet is tough for the person doing the cooking and shopping!! Diet helps with all of the symptoms tho . . just as important as the meds.

We go thru the Veterans Admisnistration, and there are 2 different Lactulose. One is clear and tasteless, the other is green and seems to have been flavored, and is sweet and smells of strong almost butterscoth or something. We get the awful stuff thru the mail, and the clear not so bad stuff at the local VA pharmacy. When ever I can, I get it thru the local pharmacy. The green stinky stuff is how they like to send it, because its sent directly and costs less that way. If you are buying it at a pharmacy, see if they have adufferent brand or try a different pharmacy if you are getting the green tinted one . .ask for the clear. It is realyy not as bad (easy for me to say, I'm not taking it'!!)

Debbie
Posted Yesterday 11:40 AM (GMT 0)
Yes it is green.He says it tastes coconutty kinda.But if I don't stand there and watch him take it or stay on him about it,it is unlikely it will be used.And YES CAREGIVER is a big bite and hard to swallow.Is there a site for us to chat and vent.I wish my parents were alive to take care of thier son,but glad that they don't have to endure this daily battle..I have fought through the years with being childless not by choice.But I am faced with tending to 2 now.His 7 year old and him.Neither of them acting their age these days.His wife is in a long term nursing home on a ventilater (?)for endstage emphyzima(?) and other lung disfunctions.
I am holding on the edge it feels.I get away from the house and buy Christmas for others and it is great therapy.
Love and Blessings
Alisa
Posted Yesterday 3:43 PM (GMT 0)
Hi Alisa,
There is a caregivers thread here. Reporting in on loved ones, posting about fears and frustrations, blowing off steam, sharing good news, etc.
I will give it a bump.
Best,
Emma
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