Avatar universal

I'm so frustrated...

I have Hep C, geno 1A.  and cirrhosis (not known how bad).   I was told by my hepatologist that he would start treatment in 2014 when both solvadi and semipriver were accepted by the FDA.  Now several things are happening... I feel worse every day and still trying to work.  Headaches, signs of hepatic encephology, (fuzzy brain, inability to concentrate, inability to find right word that I want to say, FATIGUE, falling asleep at the wheel, )  I have an enlarged liver and enlarged spleen and grade I esophageal varicies.  In addition to that, I take Lactalose which doesn't work for several days, then all of a sudden running to the bathroom and losing 8-9 lbs of stool.  Last time I was seen hepatologist said I was STABLE and that he was gonna wait awhile longer for treatment.  Now I sure don't feel stable.  I've had my Amonia levels checked twice in past month.  One time it was 61 and one time it was 86 (normal is not over 35).  Not sure how high it has to be before someone listens
My Medicaid insurance, Molina, will not pay for treatment with Solvadi  and Semiprivir.  Too costly.  About a $1000 a pill, so I went on the manufacturer's websites and both have patient funding programs for us poor people  I have filled out my part (income based) and now have to wait until August to present to Dr. for his signature and then wait, not sure how long, to see if I qualify.
Last straw.  I am overweight (who isn't in America) at 240 lbs and can't seem to be able to diet.  I have diabetes also and I smoke.  The doctor just looks at me in disgust, like I'm not a real person - just some overweight problem.  I finally asked to be seem by another Dr. in that practice (the only one around within 100 miles who can do treatment and also subsequent liver transplant.
I asked once before If there were any other drugs to take the place of the Lactalose?   and Hector told me, but I forgot to write it down.  And can anyone tell me how ammonia that goes to the brain can be pooped out with a bowel movement??  I feel like my life is all about peeing and pooping ( just had a UTI also).  There's got to be more to life than this.  Also, two of my (quote) good friends(unquote) have been distant with me.  Maybe tired of hearing the same old litany... new pains, old pains, every day in pain somewhere, tired, tired, always tired, just shoot me now...I know you guys are going thru your own private hell with Hep C and cirrhosis, but has anyone been on this merry go round before and can lend an ear??  Thanks!
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Avatar universal
Welcome and know that you are not alone.  We will all be here to give you our best advice as how to move forward.   All of us have different strengths in one area or another so combined you will get the best answers.  
You need help.   Sorry to be so blunt but from reading your story feel you are in an urgent situation.  Hate to say this but most Drs could care less about you or me so therefore we need to be our own best advocate.  The 1st thing you should do if find the best hepatologist closest to you.  You may have to take a road trip if none in your area, but its your life and at this point the scales are tipping somewhat unfavorably.  Your current Dr seems to be dragging his feet, and you need treatment now.
Am not an expert at all but appears you have a decompensated liver.  You need to get on the current meds and with that a hepatologist that knows how to care for someone with extended cirrhosis.   Many have had to fight with insurance, and others know how to go about that process.
You mentioned weight issues smoking, and diabetes.   All of these can be overcome but know it will not be easy.  For your best outcome think you need to seriously give some consideration to these facts.   Should you need a transplant (which hope you can avoid) they frown on individuals that are not at their fighting best.
I'm really sorry that you are going thru this but now is the time to take action.  Keep us posted and hope that soon you can get the treatment that you so need.        Take care.      Kim
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446474 tn?1446347682
There are a lot of issue you discuss here. I will try to cover what I can.

All of the symptoms that you describe are the common symptoms of cirrhosis. I experienced the symptoms you talk about and many more as I waited for 5 years for my liver transplant. Not that it helps to ease your suffering but at least you may realize that this is what many patients awaiting liver transplant due to hepatitis C caused cirrhosis have gone through.  Fortunately currently there are effective treatments that work in those with cirrhosis that may prevent irreversible liver disease or liver cancer requiring transplantation to continue living.

Unfortunately friends who haven’t experienced serious chronic illness don’t and can’t understand what you are going through. You may want to limit what you say to certain people about your illness as not everyone is going to be able to understand or empathize with what you are going through. If you think back only a few years ago I am sure you couldn’t understand what it meant to have advanced liver disease either. None of us did. Sometimes it takes us suffering for us to understand the suffering of others. Advanced liver disease and its complications make us different from those who health isn’t a daily concern. This is why I always recommend support groups to people that are going through something that the average people is not dealing with, in your case that would be a liver transplant support group where people like yourself can talk with others who are going through the same experiences. Groups help us to know that we are the only ones going through our experience alone. Only others dealing with similar issues are the only ones who “get it:. If there is a transplant center near you I would highly recommend seeing if they have a transplant support group for those suffering with the complications of advanced liver disease and are trying to live as best they can with it. Many people with cirrhosis on transplant waiting lists  have never meet another person with the same condition which can make it tough living life while ill everyday. For many people meeting others with the same health condition can change their entire attitude toward their illness. Many of us who have chronic conditions live our lives learning to live with out illness. By joining with others people are learn to live with even fatal conditions. There is a lot of power when we join with others and don’t just try to do everything alone.

Try to be patient about getting your treatment meds. All things around cirrhosis take time. Cirrhosis takes decades to develop and some of us had to wait years for transplant. I can’t think of anything that happens quickly in the world of advanced cirrhosis. All we can do is do all the steps we need to do and then wait for the results. I was never a patient person but I learned over time dealing with hep C infection, cirrhosis, liver cancer and transplant that trying to control everything is a waste of time and whatever energy I have. I do what I have to do and let the rest take care of itself. I don’t need the added stress. I have enough on my plate without adding additional things I can’t control. Over time I have found that if I do my part the rest will take care of itself. Sometimes I have to push things along to make sure they happen but I just do what I need to do and then get back to living my life.

As far as Lactulose is concerned there seems to be a few issues. First the powered form of Lactulose is Kristalose. Unfortunately it is more expense than Lactulose and your Medicaid may not pay for it when there is cheaper Lactulose. The only way to find out is to have your doctor prescibe it for you. The second and larger issue is it appears that you are taking the Lactulose properly. This is a common problem. For Lactulose to be effective it must be taken in a dose that produces 2-4 bowel movements a day. Less BMs will not manage HE and taking too much and producing diarrhea will cause dehydration and worsen HE. The same applies to Kristalose. It can people many months to find the right dosage of Lactulose to properly manage HE. It is not as simple as it sounds. The good thing is that Lactulose does work. But it is only when it is properly taken that it works.

“Lactulose is typically prescribed as 2 tablespoons by mouth once or twice a day, although there is a large variation from one patient to the next in the amount of lactulose required to improve symptoms of hepatic encephalopathy. Because of this, and the fact that lactulose is not absorbed from the gut and is generally quite safe, patients should be instructed to titrate (i.e., go up or down) on the dose so that they have 2 to 4 loose bowel movements a day.”

The addition of Xifaxan can also help to manage HE without any nasty side effects. Xifaxan is expensive. About $1,000 a month but they do have a program for those who can’t afford it. I would contact the Salix Patient Assistance Program (PAP) and see if you can get the drug.

Here is an explanation of hepatic encephalopathy.
“The cause of hepatic encephalopathy is complex and not completely defined, but it is clear that nitrogenous wastes, particularly ammonia, derived from the gut play a major role in the observed disruptions of brain function. Bacteria residing in the large bowel (colon) produce ammonia that is absorbed into the bloodstream leading to the liver. Under normal circumstances, ammonia is efficiently detoxified in the liver so that relatively little escapes into the general circulation bathing the brain. However, with advanced liver disease, whether acute or chronic, the detoxification of ammonia and other toxins by the liver fails, and they accumulate in the blood and disturb brain function. This failure results in part from an inadequate mass of normally functioning liver cells (hepatocytes), and also from a propensity of blood to shunt (short circuit) around the liver with advanced liver disease, particularly cirrhosis.”

How Lactulose works:

Because humans lack the enzymes to split Lactulose into its component sugars, it is not absorbed into the body, remains in the intestine, and ultimately arrives in the colon  where bacteria normally living there can digest it. Lactulose appears to inhibit intestinal ammonia production and improve symptoms of hepatic encephalopathy by several mechanisms, including:
* Lactulose causes emptying of the bowels thereby decreasing both the bacterial load in the colon and the time that colonic bacteria have to metabolize protein into ammonia and other toxins.
* The conversion of Lactulose to lactic acid by fermentation by colonic bacteria results in acidification of the gut which in turn appears to promote movement of ammonia from the blood stream into the colon.
* Gut acidification may also inhibit bacteria that produce ammonia and lead to an increase in lactobacilli, which produce less ammonia.

Hang in there. There are now effective hepatitis C treatments for those with cirrhosis. Hopefully you will be able to cure your hepatitis C and your liver disease can still be reversed with proper management.

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Avatar universal
as always, thank you so much for taking the time to answer my questions.  You are a Godsend to the cirrhosis and Hep C community!  I especially now can understand how lactalose works in the colon!  Be Blessed!
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Avatar universal
Thank you for responding to me.  I know I need a better doctor, but there is a  lack of good hepatologists and transplant centers in central Ohio.  I would like to keep a dialogue going so that when I'm particularly down and frustrated, I can spill my guts to you guys and not to my friends who don't really understand.  
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Avatar universal
Your symptoms sound like you could be progressing to liver decompensation.  I would do everything possible to get on treatment before you cross the line from compensated to decompensated, which can happen quickly in some cases.  Yes, there are better drugs than currently approved ones coming later in the year; but treating now can prevent further damage to your liver before those drugs are (hopefully) approved late in 2014 and before you have to go through a possibly long approval process for the new drugs.

If you are in central Ohio, Ohio State University has a liver transplant program and should be fairly close to where you live.

Kidney, Liver and Pancreas Transplants:
Ohio State's Comprehensive Transplant Center
Abdominal Pre-Transplant Office
770 Kinnear Road, Suite 100
Columbus, OH 43212
614-293-6724 or 800-293-8965
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