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How long can he stay like this?

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Posted 12/6/2012 10:32 AM (GMT -5)

Hi everyone this is my first post but I'm so glad to find this site. First let me start by saying my mother passed away in 2005 at age 55 from Hep. C. Well the acual cause was ARDS, but the underline cause was Hep C. With that being said I am now going through some of the same problems with my stepfather (whom has always been like a father to me and I love him just as much as I do my own father). Right now he is in the hospital for his amonia level which on Tuesday was 168 and yesterday was 140. I know that lactulose will take care of this BUT he will not take it, everytime we try to give it to him he spits it across the room, (not normal for him and I know its the amonia level causing him to act like this). The main thing I would like to know is how long can he go like this without the meds he needs. He will not take any of his meds. The swelling is getting worse as each day goes by without his fulid pills. I think they are going to draw fluid of him today and I was woundering if that could also help with the amonia level some? I'm so concerned.

Thanks

"You never know how strong you are until be strong is your only choise." said...
-Bob Marley

Posted 12/6/2012 11:16 AM (GMT -5)
They can and will give lactulose rectally if needed.
Posted 12/6/2012 11:43 AM (GMT -5)
I just talked with his Dr. that is out of town but he says they can put a tub down his nose to give it to him or a feeding tub. Thats great to know and thanks david I know they were considering rectally, although they have done no of the above yet. I'm going to take care of this today thought, something will be done for him by the end of the day.
Posted 12/6/2012 11:52 AM (GMT -5)
Hi BAM3, Welcome to the forum.

You're stepdad's symptoms are not unusual. The ammonia makes them nuts and the lactulose will help...if he will take it.

The bad part is that is he does not take it and his ammonia level gets high enough he will become more sleepy, could even slip into a coma and die. Generally they DO give it to them rectally or via NG tube in the nose directly to the stomach. He won't like that at all.

They started my partner on an oral med, xifaxan, when he was in the hospital one of the many times prior to transplant. That pill made all the difference. He started to act more normally almost immediately and began to comply withe the program of meds and tests, etc. Whew...was I relieved.

The insurance wasn't happy about that xifaxan, but relented in the end. I wrote a sobby letter that said it was the least they could do for a dying man, and that they wouln't have to pay for it for long.

Of course, with transplant, the whole HE problem disappeared...and they didn't have to pay for it for long (5 months)...and he didn't die! Everyone won that battle.

Is your step dad a transplant candidate?

Is he still drinking alcohol, or is this totally Hep C related?

Has he given up?

Feel free to share here or on the caregiver thread. We have a lot of loved ones of liver patients posting here...read back, the old posts are very informative....there is a lot of help here.

Good luck,

Mama Lama
Posted 12/6/2012 1:00 PM (GMT -5)
Hi, BAM. I just wanted to welcome you to the forum. You said your stepdad is refusing all his meds. What else is prescribed for him? Do ask his doctor about Xifaxin.

Hugs,
Connie
Posted 12/6/2012 10:11 PM (GMT -5)
Does he spit all food.? If not, you could try putting lactalose in a milkshake and blending it. My hubby can't tell it's in there if I add cinnamon and fruit and ice cream. Don't know if it will work, but worth a try before rectally or tube. More later.
Angie1953
Posted 12/7/2012 3:21 AM (GMT -5)
welcome.. welcome.. make it take that darn gone stuff... icky pooo ick.. but it must be taken.. a spoon full of sugar makes the medicine go down.. ok not so.. but.. egad.. he needs to take it.. or else... not a good thing.. Sandia
Posted 12/8/2012 1:03 PM (GMT -5)
Hi everyone thanks for the welcome

Mama Lama you asked a few questions No he has not drink in about 15 years and he is not on the transplant list now. He was acually doing pretty good until a few monthes ago. This is the first time he has had this amonia problem. They go it down to 40 but he was still acting like he was in a daze but he knew who we were and was eatting for a couple of hours. Then in the middle of the night they sedated him because they said he was screaming out. This morning his amonia level is 45.

If the levels come down whey are they going back up is what I would like to know he is still getting the lactalose but I am going to ask about xifaxin.

Any help understanding would be great.

Thanks

Missy

 

Posted 12/8/2012 2:20 PM (GMT -5)
Missy, once a liver patient has HE, it is difficult to control. He may need to have the Lactulose increased or the Xifaxan added.

Hugs,
Connie
Posted 12/9/2012 5:19 PM (GMT -5)
As of today his amonia level is 366 they increased the lactulose and also added the Xifaxan.
Could anyone tell me what the Xifaxan is for exactly?

Missy
Posted 12/9/2012 5:54 PM (GMT -5)
It works as a mild antibiotic and rids the body of the built up toxins . When added in combination with Lactulose it delivers a double punch in ridding ammonia .


A . Ziffle
Posted 12/9/2012 7:42 PM (GMT -5)
OMG!! 366 is really high!! Is he coherent? My husband slipped in and out of "coma like states" when his Ammonia was out of control. Towards what would have been the end, the last 3 - 4 months before transplant, this happened alot, and usually ended up in a week stay @ the hospital. I hope they can get him regulated with the lactulose and Rifaxamin to stop the spikes!!

Good Luck

Debbie
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