new and not enough info

[aritzman]

can any one help me my Dr has left alot of openness to this whole thing. I have had hep-C "for a long time" as the liver Dr said. I am not elgibel for treatment for Hep-C Dr said liver cant take it???? alot of sympyoms that are: nausua, tender abd, Loss of memery, trouble consetrating , no enegery to do any thing, loose stool that is eather realy pail or bright green, when i have to go it's NOW or .... well a imbarissing mess, intestanal pain shortly after a meal (witch is ever decreasing) like someone punched me hard in the gut, i feel dumb like special edd student, mood swings, cramps in my hands legs and arms and i never felt this befor in my abdemn and neck, my love of my life said"dont read about it just live your life for today" makes me think she knows something i dont or is that wierd thinking? only thing i can come up with is a knee sergery in early 80s means i had this32 or so years now.  ceroisis is prety bad as Dr said. am i on the fast track out or?? hospitalized 1 time for amoina way to high where do i find the answers i need to do  ???? what ever i need to do>?? here ( I hope) what up ??

[Sevetts]

You have heard from (in my opinion) the two most knowledgeable people here, Randy & Hector.  I cannot stress enough to follow their suggestion about getting in to see a hepatologist right away.  The sooner the better.  It is also my opinion that you research and learn as much as you can about this disease as there are many things that you'll need to be aware of and stay on top of.  Also you need to get on a good diet and exercise plan.  Regulate your protiens, low/no salt, NO alcohol etc.  This is not a disease where you want to stick your head in the sand and just let things play out as you go along.  There are things that you can do.  Knowledge is power.  A good attitude always helps too.  :)

Shelley

[HectorSF]

As Randy said you must be evaluated by a liver transplant center. They are the only medical personal that can care for people like yourself with advanced cirrhosis. Seeing an individual doctor who is not a hepatologist (liver specialist) is a waste of time and you will only get more ill over time. Your doctor should have referred to to Mayo by this point. Why he/she didn't I don't understand.

That it has taken 30 years for your cirrhosis to develop do to being chronically infected with hep C is typical. Liver disease is a slow moving disease until it gets advanced and then it can advance rapidity. Which is your situation now.

If you are in Phoenix you should go to the Mayo clinic. They are an excellent transplant center so you are very lucky to have such a great transplant center near by.

Mayo Clinic's transplant center will evaluate your current health status and determine if it is possible to treat your hepatitis C or if you liver is too damaged and that possibility is no longer an option. Your main issue is your liver disease, not your hepatitis C. They will help you will you symptoms and keep you as healthy as possible for as long as possible until you need a new liver. You have all of the symptoms of advanced decompensated cirrhosis which is irreversible liver damage and my need a liver transplant in order to continue living. Please realize how serious this is and get help ASAP. Time is not on your side.
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Mayo Clinic
"Mayo Clinic works with hundreds of insurance companies and is an in-network provider for millions of people. In most cases, Mayo Clinic doesn't require a physician referral. Some insurers require referrals or may have additional requirements for certain medical care. All appointments are prioritized on the basis of medical need."

800-344-6296
8 a.m. to 5 p.m. Mountain Standard Time, Monday through Friday.

Preparing for a liver transplant
* Meet with Mayo doctors to determine whether a liver transplant is right for you.
* Receive your new liver during transplant surgery.
* Enjoy improved health as you learn to take care of your liver.

For more information
http://www.mayoclinic.org/liver-transplant/

I am waiting for a liver transplant myself. If you have further questions please post them here and we will help walk you through the process.

Best to you.
Hector

[rpooo]

Hello aritzman and welcome to MedHelp.

I am sorry to hear about your prognosis but I can't help but wonder how qualified is the doctor treating you? The first thing we tell all new members in this community is to emphasize the importance in registering with a transplant center to receive your treatment options and prognosis. Other doctors may have great intentions but just are not qualified to treat you. This can greatly impact your chance for survival. This does not mean you will need a liver transplant but only that you will receive the best treatment available. Staging your cirrhosis and beginning your treatment immediately is critical, to do nothing but to just continue enjoying your life as if nothing is wrong will surely accelerate cirrhosis. Medications to manage your symptoms are available and help tremendously.

Alcohol and most pain medications kills large amounts of liver cells and will ensure that cirrhosis advances quicker so the use of these products must be avoided if possible.

Hepatic encephalopathy or "HE" is caused by disorders that affect the liver. These include disorders that reduce liver function (such as cirrhosis or hepatitis) and conditions in which blood circulation does not enter the liver. The exact cause of hepatic encephalopathy is unknown.

An important job of the liver is to change toxic substances that are either made by the body or taken into the body (such as medicines/alcohol) and make them harmless. However, when the liver is damaged, these "poisons" may build up in the bloodstream.

Ammonia, which is produced by the body when proteins are digested, is one of the harmful substances that is normally made harmless by the liver. (Therefore red meat should be avoided) Many other substances may also build up in the body if the liver is not working well. They can cause damage to the nervous system.

Symptoms may be mild at first. Family members or caregivers may notice that the patient has:
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Breath with a musty or sweet odor

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Change in sleep patterns

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Changes in thinking

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Confusion that is mild

•
Forgetfulness

•
Mental fogginess

•
Personality or mood changes

•
Poor concentration

•
Poor judgment

•
Worsening of handwriting or loss of other small hand movements

More severe symptoms may include:
•
Abnormal movements or shaking of hands or arms

•
Agitation, excitement, or seizures (occur rarely)

•
Disorientation

•
Drowsiness or confusion

•
Inappropriate behavior or severe personality changes

•
Slurred speech

•
Slowed or sluggish movement


Patients with hepatic encephalopathy can become unconscious, unresponsive, and possibly enter a coma.

Patients with hepatic encephalopathy are often not able to care for themselves because of these symptoms

Treatment for mild symptoms of HE is changes in diet and medication such as Lactulose and Rifaximin (Xifaxan).
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It is important you and your loved one learn about HE since this will impact the both of you. Please see this link for more information:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001347/

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Cirrhosis is scarring of the liver. Scar tissue forms because of injury or long-term disease. Scar tissue cannot do what healthy liver tissue does - make protein, help fight infections, clean the blood, help digest food and store energy. Cirrhosis can lead to
•Easy bruising or bleeding, or nosebleeds
•Swelling of the abdomen or legs
•Extra sensitivity to medicines
•High blood pressure in the vein entering the liver
•Enlarged veins called varices in the esophagus and stomach. Varices can bleed suddenly.
• Kidney failure
•Jaundice
•Severe itching
•Gallstones

A number of people with cirrhosis get liver cancer.

Your doctor will diagnose cirrhosis with blood tests, imaging tests, or a biopsy.

Cirrhosis has many causes. In the United States, the most common causes are chronic alcoholism and hepatitis. Nothing will make the scar tissue disappear, but treating the cause can keep it from getting worse. If too much scar tissue forms, you may need to consider a liver transplant.

"The nation has a severe shortage of donated livers. More than 16,000 people are awaiting a liver transplant, and just 6,300 a year get one. More than 1,400 others die waiting each year.

Since 2002, the sickest patients have been ranked atop waiting lists to receive a liver from a deceased donor. They're given a so-called MELD score, based on laboratory tests, that predicts their risk of death. Rising scores move them up on the waiting list. The change by all accounts has greatly improved the system, which once was based instead on time spent waiting.

Here's the lingering trouble: Patients with liver failure and would-be donors are not distributed evenly around the country. And the nation is divided into 11 transplant regions that have wide variations in patients and available organs, between regions and within them.

A donated liver is offered first to the sickest patients in the local transplant center, and if there's no good match, then to the sickest patients throughout that transplant region. If there's still no good match, the liver can go to someone who's not as sick – rather than to someone sicker in the next transplant region.

Patients can shop around for shorter lines, even get on more than one list, if they have the means to get to a far-away hospital within hours of a liver becoming available" - http://www.huffingtonpost.com/2011/02/15/liver-transplant-wait-_n_823358.html

I hope this information will help you out and I wish you all the best.

Randy