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Posted 2/21/2012 4:03 PM (GMT 0)
this is nothing new to this site...I am a new member. My husband has hepitis C with cirrosis. His ammonia levels are elevating, he had a tipps procedure done in September after his sugar levels and kidney's went wacking and he was having to go and get "drained" almost weekly and i am talking sometimes 17 liters....now We are dealing with high ammonia levels and the feeling of not having much hope...he is on the transplant list but now that he has had the tipps his scores are low! ...sucks

The doctors are say "this is just the way things are now"...like i said it sucks, sorry to vent and put out the pitty wagon.

confused  

Posted 2/21/2012 4:37 PM (GMT 0)
DeLoup, hello, and welcome to the forum. Is your husband taking Lactulose for his hepatic encephalopathy (HE?) Just be aware that he could "crash" at any time and that would raise his MELD score. Also, if he develops liver cancer his score would increase tremendously. But for now, all that can be done is to deal with the symptoms.

A proper diet will help a lot. Your husband should eliminate red meat from his diet, and increase fresh (or frozen) fruits and veggies. NO ALCOHOL, not even a beer.

You might want to check out the Hepatitis Resources folder at the top of the page for info on liver disease. Also, look into the Caregivers thread. You will get lots of support there.

Hugs,
Connie
Posted 2/21/2012 4:46 PM (GMT 0)
Thank you we have been on a hepatic diet/low sugar/low salt for a long time now...which only leaves water:)...but after disscusions with doctors we are just trying to stay away from red meat and salt. They dont care if his sugar levels are elevated right now. He has been on krustalose for a few years now..it has increase alot in last few months.

This am he woke up and i know when he needs a early dose. so far he is up to 5 packs , the doctors recommend 2 am 2 pm and 1 in late pm if needed, but lately he has been up to 9 packs in a day with stools about 12 - and still he has confusion. not upset with "confusion" but not even to know how to flush a toilet or eat a sandwhich is a little more than confusion....he sleeps alot! - just wish we could do something to prevent these attacks..one day he is fine the next he wakes up...well sort of wakes up and he is more than confused> just miss his beautiful Mind:)

 

Posted 2/21/2012 5:26 PM (GMT 0)
Deloup, ask his doctor about Xifaxin. It is often given in such cases where Lactulose does not remedy the HE. It is very expensive, so his insurance may balk at paying. If so, get a letter from the doctor stating that it is a medical necessity. I believe the drug's website also lists patient assistance. Someone here will know and give more specific directions about that.

Diet Sprite has no sugar and very low sodium, but water is better for him.

Hugs,
Connie
Posted 2/21/2012 5:52 PM (GMT 0)
yes he is on xafen. and yes this is very expensive...like $1,000 for a 3 month supply confused I think the doctors have him on everything that is available. Just wish the kristalose would not taste bad and yes it is not tasteless...he has been using apple juice.

Thanks for the advise about the support group turn

Posted 2/21/2012 5:55 PM (GMT 0)
sorry i am not the best speller especially when it comes to medical terms...xifaxan he takes twice daily....
Posted 2/21/2012 6:01 PM (GMT 0)
Some have said that Kristalose tastes better. I have been fortunate not to have to take either that or Lactulose.

There is a medical word list in the Hepatitis Resources folder, to check for correct spellings.

Hugs,
Connie
Posted 2/21/2012 7:41 PM (GMT 0)
I am on lactulose and just one SIP and I poop all day.I alsa have that confusion so I must take it.I tried Xifaxin medicare does not pay for it,but I wish they did. Is it normal to just go water
Posted 2/21/2012 7:45 PM (GMT 0)
Yes, if there is no more food waste to be eliminated.

Hugs,
Connie
Posted 2/21/2012 7:50 PM (GMT 0)
Apple juice has a lot of sugar. You might want to stick with water, or at least dilute the juice. Lactulose tastes bad, but it's not as if you drink large glasses of it. Toss it down and the taste is gone a minute later. What is such a big deal about it?
Posted 2/21/2012 9:43 PM (GMT 0)
I have seen 3 different colors of Lactulose . .clear, green, and orange. The green is horrible!! You can smell the sweetness of it when the bottle is opened . .it smells like butterscotch out of control. The clear is semi tasteless and easier to throw back . . the orange I have just seen recently, here at the hospital in PA, and he sucked it down so it must not be too bad. Try to find the clear . . brown bottle!!

Debbie
Posted 2/21/2012 10:06 PM (GMT 0)
been using kristalose a generic ...suppose to be tastless, its is a power you mix with a liquid. Orange juice was ok for awhile, now he prefers apple juice. He only uses about 6oz glass, but he takes this 3-4 times a day. 2-3 packs depends on HE level. Thank you next time he is hospitalized with see about other flavors:)
Posted 2/22/2012 12:20 AM (GMT 0)
so I do keep taking it even if it is nothing but water left in me?
Posted 2/22/2012 12:28 AM (GMT 0)
My husband doctor has him on 2 packets in the am  2 packs in the pm  one at night...all the time.  This is increased if he has HE. up to 9 packs a day so far.   he never stops taking this:(

 

Posted 2/22/2012 12:54 AM (GMT 0)
my hind is bleeding,rawI need advice
Posted 2/22/2012 1:04 AM (GMT 0)
you need to go see your doctor for advise.
Posted 2/22/2012 2:06 AM (GMT 0)
I agree with deloup. At least give your doc a call. Meanwhile, you can use a skin barrier such as petroleum jelly to protect your skin.

Hugs,
Connie
Posted 2/22/2012 4:15 AM (GMT 0)
http://www.salix.com/about-us/corporate-responsibility/patient-medication-assistance.aspx
This is the link to download the pdf file for patient assistance forms for Xifaxan , It can be shipped to your door or picked up at your doctors office once approved . Of course you will need your physician to help you fill out the form . In most cases you will get 550 mg tablets @ 90 day supply free of charge .

Lactulose is quite nasty !!! It's just one of many unpleasant things this disease carries with it , Albeit small in the scope of things . I myself was in similar shape as your husband but was fortunate enough to have been stable over the last few years . Hope everything works out for you guys .


A. Ziffle
Posted 2/22/2012 11:28 PM (GMT 0)
Hi from Florida,

Mike was a loon for a long long time. The Lactulose and Xifaxan really helped. We got the meds covered by Medicaid by writing a really sob letter about End Stage Liver Disease being a terminal illness...and they covered it with NO co pay.

But from the day he had his transplant HE was behind him! Thank goodness. No more fluid buildup, no more HE, no more coke colored urine, etc.

That Mike got to transplant is a miracle and his 9 months post transplant have been a gift.

Good luck,

Carol

Post Edited (MamaLama) : 2/22/2012 7:58:14 PM (GMT-7)

Posted 2/22/2012 11:38 PM (GMT 0)
Thanks for the link, Ziffle. I have put it in Hepatitis Resources.

Hugs,
Connie
Posted 2/23/2012 12:05 AM (GMT 0)
Thank you Ziffle & Carol ..will look into this, but since were are not on medicaid dont know if our supplemental policy will cover this..but it does not help to try, thank you again.

de Loup
Posted 2/23/2012 1:40 AM (GMT 0)
Did you not read Ziffle's first paragraph? You might be able to get the Xifaxan free of charge!

Hugs,
Connie
Posted 2/23/2012 2:03 AM (GMT 0)
and you usually have to be on medicare/ or not too good of shape fiancially:) not everyone qualifies. We did do some checking. but will check again.
Posted 2/23/2012 4:19 AM (GMT 0)
I thought the only qualification was the med being a necessity and a patient qualifying financially. I know this is true of other drugs.

Hugs,
Connie
Posted 2/28/2012 11:43 PM (GMT 0)
Rob, I was going to copy and paste your post to a New Topic, but somehow lost it. Can you please post again, but hit New Topic instead of reply. Very sorry for my error.

Hugs,
Connie
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