hep c questions

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april racer
New Member


Date Joined Jun 2008
Total Posts : 4
   Posted 6/14/2008 10:59 PM (GMT -7)   
My mother has hep c and I am trying to undersatnd everything.
First I willl give a quick history and then start with the questions. She has had hep c for 35 years and let it go untreated and ignored until 2004 when she went on interferon. She had to quit the medicine before the disease was irradicated because they were worried about cardiac arrest. She has not had any issues until about 3 weeks ago when i found her near unconcious on her bedroom floor. She was taken to the emergency room and sent up to icu. She spent about 10 days on a resperator, had an ammonia level of 101, lactate of 10.3, and a prealbumin below 3. They thinnk she aspirated gastric acid which led to pnemonia and a staph infection in her lungs.While in the icu she had ascites and they pulled of 3500cc of fluid. She was given lactulose among other things and came out of the whole ordeal quite well. She was sent to the floor for a few days then to acute care for a week and is now in a nursing home. She was sent there for physical therapy because she doesnt have the strength to walk. On thursday she was starting to take steps on her own and it looked like she would be home soon. Today she extemely dioriented and confused. I am assuming from elevated ammonis levels. They said that some more lactulose would clear that up in a few days and do not seem too concerned. She also has cirrhosis.
 
Will she always need to be on the lactulose? Will the confusion return if she is not on it?  What should I be most concerned about? What liver function tests are the most important? Is the malnutrition caused by the hepc and or cirrhosis?
 
She is just shaking so bad and is so cold and cant hold a glass of water and is so confused and I just dont know what to do. 

JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 6/14/2008 11:43 PM (GMT -7)   
Hi april racer,

Welcome to the forum. I'm sorry that you have to deal with this disease -- it is complex and no two situations are the same. Fortunately there are a lot of experienced and caring people here. I have found their support and knowledge to be extraordinary. I have had Hep C for 30 years with liver disease symptoms beginning noticeably four years ago. Due to an enlarged spleen caused by the cirrhosis, which in turn lowered my platelet count, I cannot have treatment without a liver transplant.

The first thing that you should do is sort through past educational threads, mostly by 1shelly1 and Pink Grandma, that give you basic information. "Education-Part 1 of 3: Anatomy of the Liver", "Education: Stages of Liver Disease" and "End stage liver Symptoms & Developments" are examples.

Next you should go to the Center for Disease Control (www.cdc.gov) and the United Network for Organ Sharing (www.unos.org) sites for background. I personally also recommend the Pittsburgh Tribune-Review liver transplant series (http://www.pittsburghlive.com/x/pittsburghtrib/news/s_556307.html)

The confusion and lack of mental focus is encephalopathy, also called 'mind fog'. My understanding is that a healthy liver changes blood ammonia into urea, so as the liver fails from cirrhosis, the increased ammonia causes the mental problems. The lactulose is a sugar that accelerates digestion, flushing the excess ammonia from the system. So without knowing the level of liver cirrhosis, you can't determine how long (usually until a liver transplant) the confusion and need for lactulose will continue.

That's really all I can suggest right now. I'm due for my lactulose so focusing is difficult.

Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/15/2008 4:59 AM (GMT -7)   
Hello April Racer and welcome to HealingWell. So sorry that you have to go this with your mother. We have others that have or are still going through this with their parent. So you are not alone in this anymore.
Since your mom has gotten a staph infection already do they have her on some kind of antibiotic? High ammonia levels and infections are the 2 culprits that cause encephalopathy. So some people get put on antibiotics continuously. And yes the more damaged the liver gets the harder it gets to control the encephalopathy. So unless the patient gets a liver transplant they will probably need to stay on lactulose and/or antibiotics for the rest of their life.

Between the liver not being able to do it's job well and the patient not feeling well malnutrition can develop. Some doctors get a dietician involved. Especially if the patient is a transplant candidate.

John gave you excellent advice..... have you gotten a chance to read over some of the older posts yet? We have addressed a lot of the issues that you are facing or will be facing already. I will be more than happy to bump some of them to the top if you were unable to find them. Let me know.

Take care.........thoughts and prayers for you both.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


april racer
New Member


Date Joined Jun 2008
Total Posts : 4
   Posted 6/15/2008 6:20 AM (GMT -7)   
Thank you both and yes I have read some posts and I plan on doing some more it was just really late last night when I found this forum. I have also done a lot of reading on line and it just seems so bleak. I was afraid she would have to be on the lactulose for ever. She just doesnt have the strength to get out of bed so the combination of the two makes her very uncomfortable, to the point to where she doesn't want visitors. I read somewhere in one of the posts that whe sould be on a low protein diet, but her nutrition is so bad that they are doing the opposite. How important is the low protein diet. Once again thank you very much and I am glad i have found this forum, I think it will come in handy for both the information and for the support.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/15/2008 1:25 PM (GMT -7)   
Hi April Racer,

Why some say low protein is because protein is one of the things that is hard for the liver to process. Some think that it's one of the things that
cause the ammonia levels to rise. But if there is muscle waisting than some doctors say hi protein. Muscle needs protein. So of all the proteins to eat beef is the hardest for the liver to process. So I had my husband eating........chicken,turkey,pork and seafood. Beans, soy,nuts and milk products are another good source of protein. They had my husband on a multi-vitamins without iron also. Lot's of fresh fruit and veggies if possible. Hope this helps.

Have a good day..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/15/2008 6:52 PM (GMT -7)   

April Racer, welcome to the forum.  I hope you will find the info you need here or at suggested sites.  I know that you will receive a lot of support.

I've had active hep C for 40 years.  Although it caused liver cancer (now in remission), I thank God I have not yet been ill with encephalopathy, weakness, etc., although I've had 7 surgeries (only one related to hep C.)  I feel so badly for those who are so terribly sick, and also for their family members who are usually caregivers.

Hugs,

Connie


Post Edited (hep93) : 6/16/2008 10:24:21 PM (GMT-6)


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/16/2008 4:34 AM (GMT -7)   
Hi April Racer,

Welcome to the Healing Well forum. I am so sorry about your Mom.
I am caring for my husband and my mom. He had Liver disease with Liver cancer. Mom has chronic stomach issues and COPD. She just came to live with us last Sunday.
I hope to talk to you again soon, but now is not a good time for me.

Take care and stay well,

Carol
 


april racer
New Member


Date Joined Jun 2008
Total Posts : 4
   Posted 6/16/2008 6:49 PM (GMT -7)   
Thank you all for the kind words and support and I also am sorry about what all of you are going through. they have put her back on the lactulose and she seems less confused. She doesn't seem to get the care she needs at the nursing home but insurance said she was too well for acute car. Are there other options besides those. The nursing home even said she would probably be sent home within the week. if I could I would move her to my house or move in with her but it just is not a viable option. Are the places that are more medical than a nursing home that insurance would approve?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/16/2008 9:33 PM (GMT -7)   

April, the only thing I can think of offhand is a Skilled Nursing Unit (SNU.)  However, people generally come from hospital care to that.  Also, if your mom is being discharged soon, she would probably not qualify medically.  As far as insurance goes, unless she has long term care insurance, the only thing she would probably be eligible for is a nursing home.  The only other option would be to see if she can get visiting nurse care, based on the fact that she is living alone.  A nurse would come in every day, or several times a week, and make sure she is taking her medication/lactulose properly and that she has enough; check her lungs and BP, etc.  If the nursing home could recommend this as part of their discharge plan, insurance would be more likely to approve it. 

I suggest you talk to her caseworker at the NH and the case manager with her insurance provider.

Hugs,

Connie


april racer
New Member


Date Joined Jun 2008
Total Posts : 4
   Posted 6/19/2008 12:17 PM (GMT -7)   
Thank you hep93. She has since been sent back to the hospital. On Tuesday night the nursing home, wherre she was in the SNU, sent her to the hospital because the confusion had gotten so much worse. I do not know if I used the correct terminology but I asked the Dr. at the hospital if my mom was in or has end stage liver failure and she said yes. Is there a difference between liver disease and liver failure? What does end stage imply. I atry to look thois stuff up onlinne and it all seems so vague. I also did her MELD score and MELD-Na and I am not really sure what that is telling me either. I think lower is better but I am not positive. Also which one is a better score to look at. The doctor said that the only thing to do now is a liver transplant but she is not eligable for that for 5 months. As far as the MELD scores go her MELD without the Na is more promising.
Right now we are waiting on an ultrasound of her abdomen because she had a fever and they are worried about some spontaneous infection but I do not think they are too concerned that is happening. All things considered she seems like she is doing ok, except for the encephalopathy. Both of us are getting used to it. It seems like she is demonstrating some more symptoms but it might just be me reading more and recognizing them.
Once again thank you all for your help.

JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 6/19/2008 12:57 PM (GMT -7)   
Hi april racer,

Again, I am sorry that you must face this with your Mom. It is an often confusing situation and difficult as best. As a caregiver, you need to be able to take care of yourself. This helps both you and your Mom. Find ways to unwind and get a respite from the day-to-day grind of care giving. It is important.

I'm not an expert but I have had Hep A, B and C for many years and am now facing ESLD.

As I understand it, the term 'end stage' indicates that there are limited options, and if no action is taken, liver failure and death will follow. The time line on that occurring is not a set time and varies from person to person and condition to condition. Someone with little cirrhosis can live many years, while someone with advanced cirrhosis faces a much shorter life span unless a liver transplant is performed.

Liver failure, as I understand it, is a term used for the actual shutdown of liver functions. Again, it is variable from the initial stages where the liver is working, but not at full capacity, to 'acute liver failure', where the liver almost completely stops working. 1shelly1 has a thread that describes the liver functions. If you haven't yet read it, you should.

I don't know if this is helpful or not. I wish you well in caring for your Mom and urge you to take care of yourself. I can only imagine the pain and burden that you caregivers have to carry.

Be well, John
I have to get up the creek! Now where's that paddle?
Mind-fogged again.

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