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Posted 2/23/2007 9:48 PM (GMT 0)
Hey does anybody know anything about end stage liver failure about 4 years ago due to hepatitis c and severe cirrosis. she got hepatic encephalethpy well she takes lactalose. she was taking it 4 doses a day. its always worked.well up untill about a week ago.

her ammonia level is 147 its supposed to be down in the 50s.Her confusion hasnt hit her yet. when it does the doctor said she will go into coma. sad her red cell blood count has been depleading for about 4 to 6 months.

She takes iron pills 3 times daily. The medicne she has been taking for her staph infection called MRSA she cant take anymore it was making her kidney fail. she was told that the liver is ceaseing fucntion. it is not able to process medicine that she has been used to taking. My mom has fought for life from this for over 30 years she is 54 years old and im 22 im not ready for my mom to die shes been in a nursing home for about a little over a year now and i dont think she is going to make it another month

Posted 2/24/2007 2:52 AM (GMT 0)
Mommyange,
I am so sorry about your mom. Life sucks bigtime sometimes. You might have her doctor try Xifaxan. It has worked good for my husband's encephalaphy. Your mom really must be a fighter to last so long with her condition. I will say some special prayers for you and your mom tonight.
Hang in there...........Pink Grandma
Posted 2/24/2007 8:01 PM (GMT 0)
 

 

         Thanx a bunch for your kind words and i actually just talked to my mom and that medicine you told me about, I told her and we are going to bring that up at he appointment with her liver specialist next Tuesday. I'm going up to washington tomorrow to visit her for a week. I've never heard about it before hopefully they can do something for her becuase if she has a fighting chance to keep her isanity that what she wants. she said when she goes she doesnt want to be confused. I dont know what is going to happen but something is going to happen. From what her doctor was saying its not a ggood thing for her ammonia level to be as high as it is. Her lactalose hasn't been working they've increased it and it just made her GI tract worsen for her. Thank you so much got to go have a phone call

Posted 2/25/2007 4:00 PM (GMT 0)
Hi,

Sorry your Mom is battlilng ESLD; it's not a pleasant disease. There are a few other points you might want to bring up with her Doctor.

Iron supplements are very toxic to a cirrhotic liver. My husband almost died last April from iron supplements that caused iron toxicity. Other ways to bring up low blood counts are procrit injections and/or transfusions. Lactulose causes too many complications such as dehydration with Gene so it is taken only as a last resort; it's probably been nine months since he's even taken a low dose. Neomyacin as well as Rifaxin bring down high ammonia levels. My husband requires rotating antibiotics to contgrol toxin levels; without them his Hepatologist said he would be dead in a week. He is on Clindimyacin, Ammoxicilyn, Doxicycline and Cipro with Neomyacin, Rifaximin, Septra and Flagyll as backups; the latter antibiotics don't work well anymore with Gene as they target just the darker parts of the body and my husbands toxins are systemic.

I hope this helps and brings some improvement. Overtime, other organs such as the kidneys break down which sounds like your Mother's problem. I wish he the best and will pray for her.

Barb

Posted 2/26/2007 11:58 AM (GMT 0)
Autumn,

I am so sorry for you and your situation with your Mom. ESLD is so friggin complicated, so different for each person (it seems), and so hard for us as caregivers to understand.

My husband Jim also is ESLD, and it seems like the fewer prescription meds he gets, the better he is. That seems to be because the liver can't process toxins (like prescription meds) the same way a non-liver patient can.

In the hospital, he was up to somewhere around 140ml of Lactulose a day. And of course miserable with the GI outcome. He's now on 15ml twice a day, with none of those problems. And ammonia levels are OK. He was on 2 types of diuretics that sent his sodium and blood pressure crashing, and causing mental confusion and mini seizures. Those were removed for about 6 weeks, he came back almost to himself (physically and mentally) and now he is on a reduced dose of Aldactone for his ascites. Still almost himself.

Finally he is on an antibiotic because he is prone to spontaneous bactial peritonitis and sepsis.

Most of our efforts to keep him well are multi- and certain B vitamins, milk thistle, and a sodium- and fluid-restricted diet.

You may want to check out what they are feeding your Mom in the nursing home. It's very hard to manage a severely restricted diet. I know that the hospitals and nursing home Jim were in didn't do it.

 

Posted 2/28/2007 2:55 AM (GMT 0)
Mommyangel, How are you and your mom doing? Did you take your mom to the liver specialist today? How did it go?

You mentioned that your mom's red blood count was low. I found out today that my husband's is low too. I thought it was his white cells but he got it wrong. The transplant team wants him to have a blood transfusion . They said normal is about 40 and he's is at 26. When I called his primary care physician about it she talked with his GI and he said that they don't do transfusions until it gets lower than 8. That makes no sense to me. So now I will search the web to find out when a transfusion should be done. I don't like or trust his GI doctor at all. If my husband had just him for a doctor he would have been dead already.

Take care.............Pink Grandma
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