Cirrhosis of the Liver Community
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Avatar universal

How Long?

I've had cirrhosis for about 7 years.  Relatively symptom free.  Now, my blood counts were dropping.  After a CT scan, it showed cirrhosis was perhaps a bit progressed, with portal hypertension and a bit of water on my kidney.  Most of my whites are about 50% of what is acceptable.  My liver enzymes, bilirubin, etc., - are all normal.  My question is how long?  I have decided not to do or even attempt transplant.  Long story, but that's what I have decided.

19 Responses
Avatar universal
i also have a question about disability.  how has the process for applying for LTD (not SSDI) through your work gone?  Is it basically an approved condition?  Thanks,
446474 tn?1446347682
Are you under the care of a hepatologist at a liver transplant center?
LIver disease is a progressive illness. It always gets worse over time. Untreated it will eventually result in End-State Liver Disease and death without the option of transplantation.

What is the cause of your liver disease?
Is the underlying cause treatable?
What is being done to manage your liver disease?
Was your CT for surveillance of liver cancer? Are you aware that as long as you have cirrhosis you are at risk for liver cancer which if not detected early and successfully treated s typically fatal and whose only treatment is liver transplantation?


What I know based on my LTD policy... I had to be determined to be considered disabled according to Social Security and send my LTD company my SSDI letter stating I was disabled. You say you have no symptoms so you would not be considered disabled by social security. The requirement for SS is signs of decompensation such as HE, ascites, etc. plus you must be no longer able to work.

You should find out what the requirements for your particular policy are.

Good luck.
446474 tn?1446347682
How long?

No one can predict how long a person will live. Each person's liver disease is unique. Only a hepatologist with full knowledge of a person's health situation can even estimate how long they may have before they die from End-Stage Liver Disease or liver cancer. I can tell you that if you develop liver cancer and it is not treated and it spread outside of the liver typical the person has less than 6 months to live. Dying from liver failure or liver cancer is a very painful and horrible way to die. I do volunteer work at my liver transplant center and sadly we see many people who do not survive these illnesses. Liver transplantation is no bed of roses but compared to dying of liver disease or liver cancer it is a whole lot easier than dying.

Just my opinion based on my own cirrhosis and liver cancer and having needed 8 liver cancer treatment to survive to get my transplant 6 months ago.

What was your liver cancer treatment?
Avatar universal
Thanks for the response.  You thorough and thoughtful response is very kind.  I am under care of hepatologist.  It was caused by autoimmune hepatitis.  I have been off/on immunosuppressants.  Not on them right now, as my enzymes were not high.  Not a lot to manage it honestly.  I had the CT probably to check for cancer, as well as to try and see if my liver might be causing my low blood counts.  I won't say I have no symptoms.  I have lots of nausea and fatigue.  HAve had for years, is getting worse.  I am getting recurrent infections.  Had an infection in my heart due to dental work a bit ago.  Your points are very valid, and consider a lot of thought on my part.  I do agree the disease is awful - no doubt about that.  Best of luck with your health as well.
446474 tn?1446347682
I am glad you are seeing a hepatologist as they can give you all the information about your particular conditions.

I am sorry to hear that your liver disease is caused by autoimmune hepatitis. I have met others with it but frankly am not familiar with its particulars.

Does your doctor say what is causing your blood levels abnormalities? Or are they trying to figure out the particulars? Which blood levels are dropping? Your WBC you say. Platelet count will continue to drop as portal hypertension increases.

The fatigue is the universal symptom of advanced liver disease. Many people also experience nausea also.

"recurrent infections"
Cirrhosis causes immune dysfunction (a weakened immune system). Which is why cirrhotics are more prone to all infections. Bacterial, viral and fungal. As you may know cirrhotic may need to be hospitalized for infections and have IV antibiotics. Also many with End-Stage Liver Disease also die from infection. That is why ascites can be so dangerous. Also having a low WBC makes you more open to infection. Just a tip. I am post transplant and on immunosuppressants so I don't reject my new liver. Since we are at a high risk for infection we are told to be cautious. I carry a little bottle of Purell Advanced hand sanitizer where ever I go. I am conscious of what I touch (I don't touch my face another more) and I regularly clean my hands with the gel. So far, 6 months, I haven't caught any infections. Knock on wood. It is a lifestyle change but once you start doing it you don't even think about it.
I would definitely ask your hepatologist for their recommends for being safe
Clin Gastroenterol Hepatol. 2011 Sep;9(9):727-38. doi: 10.1016/j.cgh.2011.02.031. Epub 2011 Mar 11.

Immune dysfunction and infections in patients with cirrhosis.

Bonnel AR1, Bunchorntavakul C, Reddy KR.

Patients with cirrhosis are immunocompromised and susceptible to infections. Although detection and treatment of spontaneous bacterial peritonitis (SBP) have improved, overall survival rates have not increased greatly in recent decades-infection still increases mortality 4-fold among patients with cirrhosis. Hospitalized patients with cirrhosis have the highest risk of developing infections, especially patients with gastrointestinal (GI) hemorrhage. Bacterial infections occur in 32% to 34% of patients with cirrhosis who are admitted to the hospital and 45% of patients with GI hemorrhage. These rates are much higher than the overall rate of infection in hospitalized patients (5%-7%). The most common are SBP (25% of infections), urinary tract infection (20%), and pneumonia (15%). Bacterial overgrowth and translocation from the GI tract are important steps in the pathogenesis of SBP and bacteremia-these processes increase levels of endotoxins and cytokines that induce the inflammatory response and can lead to septic shock, multiorgan dysfunction, and death. A number of other bacterial and fungal pathogens are more common and virulent in patients with cirrhosis than in the overall population. We review the pathogenesis of infections in these patients, along with diagnostic and management strategies.
I guess you already know about not eating red meat if you have hepatic encephalopathy. Also beware of shellfish or really anything uncooked which can literally be deadly to you with cirrhosis and me immunosuppressed.

Hang in there.
As I said I have been through the mill with all of this stuff and I thought I was prepared for whatever happened but I was clueless as to how much suffering there can be physically and mentally. There are levels beyond anything I could have ever imagined. Luckily I got though somehow and no longer fatigued, in pain or have to think about dying every day.
It wasn't as much being dead and gone that I struggled with, it was the torturous dying process. It is not anything I want you or anybody to deal with anytime soon if at all possible.. I am not saying transplant is a bowl of cherries but from my personal experience dying from liver disease or cancer is unimaginably worse.

This is just my opinion. We all have our opinions. I am not in your shoes and I don't want anyone else telling me when I should die or live either. It is our choice to make no one else's. Just passing on my experience with transplant and the hundreds of liver transplant patients I have met over the last 4-6 years.

Let me know if I can help in any way. Always happy to assist.

San Francisco
Transplant Nov 16, 2013 (6 months tomorrow!)
Liver transplant patient #2,999 at UCSF
446474 tn?1446347682
Here is the info on disability for you.

As far as disability look into the requirement for your LTD plan. As far as SSDI or SSI the qualifications for disability are pretty tough. You have to have a MELD score over I think 20 and you have to show with doctors reports that you have ascites for a certain period of time, bleeding varices and other complications of decompensated liver disease. Of course your hepatologist would be the best resource about disability. Maybe you have something going on that would be considered a disability.

Here is the basics for SS disability for liver disease.

Can I Get Disability Benefits for Liver Disease?

If you are earning less than $1,070 per month (in 2014), and the disability caused by your liver damage has lasted, or is expected to last, at least 12 consecutive months, Social Security will consider whether your medical condition will be considered a disability.

The SSA will first look to see if your liver damage meets one of its disability listings in its Listing of Impairments (also called the "blue book"). Listing 5.05 covers all chronic liver diseases.

Liver Disease Listing

To meet the requirements of the chronic liver disease listing, your doctor must have diagnosed you with either end-stage liver disease or chronic liver disease (having lasted at least six months) with one of the following complications:

•excess fluid in the peritoneal cavity (called ascites) or the pleural cavity (called hydrothorax)
•spontaneous bacterial peritonitis
•esophageal or gastrointestinal hemorrhage
•hepatorenal syndrome
•hepatopulmonary syndrome, or
•hepatic encephalopathy.

If you're unsure if you've had one of the above complications, ask your doctor to look at this listing form for liver disease. If you don't meet the requirements of this listing, the SSA will not automatically approve you for disability benefits, but the agency will look to see whether your liver disease has caused you functional limitations that prevent you from working (see below).

Functional Limitations of Liver Disease

The SSA will assess your "residual functional capacity" (RFC) to see whether there is any type of work you can still do given your functional limitations. For example, if you suffer from fatigue and need periods of rest, your RFC should state this. Or if your pain prevents you from walking, lifting, or carrying for more than a certain amount of time, your RFC should include this. Depending on your physical limitations, your RFC will have a sedentary, light, or medium work rating. Your RFC should also state any mental limitations caused by your disease, such as an inability to focus or remember things. Your doctor should include these limitations in your medical report so that the SSA includes them in your RFC.

How Your RFC Affects the Disability Determination

If the SSA finds you should still be able to do your prior job despite the limitations in your RFC, you will be denied disability benefits. However, if the SSA decides you are unable to do your past work, the SSA will decide if there is other work you can do. To make this determination, the SSA will consider your RFC rating and restrictions along with your your age, job skills, and education level.

Anyway here is a link to the Social Security "Blue Book" requirements for disability for chronic liver disease with all of the details.

"5.05  Chronic liver disease,with:"

Avatar universal
God bless you for your kindness in replying.  The information helps a lot.
6708370 tn?1471490210
Happy 6 month anniversary with your new liver Hector!
446474 tn?1446347682

Avatar universal
cirrhosis to the liver, i had that almost two years ago i remember the day that the doctor said i had two to six weeks to live, because my liver has shut down . there i sat quit didnt know how to reply to that . but i continued the medications they gave me and kept on taking it quit drinking , i was so missed up cause all of my organs were shutting down it was a painful and no fun from not being able to eat not focusing cause all of the toxins(amonia) in my body from my organs not working, i lost 40 pounds in like a month after finding out how sick i was. puicking blood from broken vessels in my esophagus , i can go on and tell the hole story but  when the doctor told me i had two to six weeks i didn't know what to say to my family, i told my wife that day but didn't know how to tell my 15 year old son and my 18 and 24 year old daughters. so we just went day by day taking meds and  got checkups every week see if any changes nothin for about three weeks and finally one day there was a slight change my. my liver was starting to work again. the doctor was like wow i have never herd or have seein anything like this ,he said that this was a miracle.but to tell u the honest truth i went through hell for about a year now i just recently had my 6 month anual check up and everything is up and running normal again.just thought id share this
4670047 tn?1375730401
Good for you con man! It's great to read stories like yours. Thanks for sharing!    
317787 tn?1473358451
Thank you for your answer, I knew about red meat, did not know about shellfish.  

Thank you for sharing your story. Really helpful.
446474 tn?1446347682
All patients with cirrhosis can benefit from certain types of lifestyle interventions. These include:

Stop drinking alcohol . It is very important for people with cirrhosis to completely abstain from alcohol.

Restrict dietary salt . Salt can increase fluid buildup in the body. Eating a variety of foods every day can help you limit the amount of salt you are getting. It is best to eat fresh vegetables and fruits whenever possible and to avoid eating processed foods.

Eat a healthy diet . People with cirrhosis are typically malnourished and require increased calories and nutrients. (Excess protein, however, can trigger hepatic encephalopathy.) They also need to avoid certain foods, such as raw seafood or shellfish, which carry risks of blood poisoning (septicemia). A dietician may help provide you with dietary guidelines.

In immunocompromised persons, particularly those with chronic liver disease, V. vulnificus can invade the bloodstream from either a wound or from the GI tract, causing a severe and life-threatening illness called primary septicemia, characterized by fever, chills, septic shock and death. Blistering skin lesions accompany the disease in about 70% of the cases. V. vulnificus bloodstream infections are fatal about 50% of the time.

Get vaccinations . Patients with cirrhosis should ask their doctors which vaccinations (such as hepatitis A, hepatitis B, influenza, pneumococcal pneumonia) they need.

Discuss all medications with your doctor . Before you take any medications, (including nonprescription pain relievers such as acetaminophen, aspirin, naproxen, and ibuprofen), ask your doctor if they are safe for you. Liver damage affects the metabolization of drugs.
Inform your doctor of any herbs or supplements you are considering taking .
Certain types of herbal remedies (kava, chaparral, kombucha mushroom, mistletoe, pennyroyal, and some traditional Chinese herbs) can increase the risk for liver damage. Although some herbs, such as milk thistle (silymarin) have been studied for possible beneficial effects on liver disease, there is no scientific evidence to show that they can help.

317787 tn?1473358451
Dear Hector, thank you so much for your information.  Once again it has been invaluable.  I knew about red meat, in fact I stopped eating it long before I found out how sick I was.
I recently found out no fried food and stopped that but did not know about the shellfish until I read it here.   For some reason I thought shrimp was  healthy.
I was having about once a month.   God I feel so damn dumb.
Thank you.
317787 tn?1473358451
Thank you so much for sharing your story.
To see what is possible is really life affirming.
Avatar universal
I don't think Hector meant cooked shrimp. It's the raw shellfish like that in some sushi, clams, oysters, etc. that are the problem.

No one in this should feel dumb at all. Even the doctors don't know everything.  There are two medicines that were interacting with the Hep C meds and setting off my husband's HE.  The doctors kept telling me these meds were not the problem though I was the one living with him 24/7 and observing how and when the HE would start.  This went on for 11 weeks.  Only after I stopped giving him those meds did the HE finally stop. Despite it stopping,  I still don't think the doctors believe those meds (Procrit and Xifaxin) were the cause of the HE for all those weeks.
     Every person is different and we should all listen to our own bodies and take steps to minimize risk and further damage to the liver or ourselves.

Please tell me exactly what side effects did  Xyfaxan cause please. I take it with my liver disease called Primary Biliary Cholangitis (Cirrhosis was used until recently as name of it; still, initials same.) I don’t know if I’m stage 3 or 4 out of 4. Thanks so much,
Hi Deb you have commented to a post that was started in 2014 most of the original commenters to this post are no longer active on the forum. Adding a comment to an old thread makes it hard to find your question.

I suggest you ask a new question and start your own thread. That way your question is more likely to be seen and hopefully commented on.

Best of luck
317787 tn?1473358451
Thank you, I did not think about shellfish that is not cooked well.  I don't want to take a chance as I have done that in the past several times, trusted that a doctor knew what he was doing, even a hepatologist at one point.
Thank you Nan, you are so supportive I really appreciate

I am so glad that you figured out the problem with the interactions.  I had a severe interaction when using Incivek in 2011.  No one knew about it, it was not discovered until others had been on tx for a while.
My own doctor did not know, when I complained he said that when these drugs are used in trials it is strictly controlled so that there are sx that are not known until the general public starts using.  I saw that Xifaxin has rimpfan which is contraindicated.  I might have spelled it wrong here.  Hopefully you know what I am trying to say, good for you.
Take Care
317787 tn?1473358451
I found it rifampin is contraindicated with Sovaldi.
Avatar universal
That's exactly right -rifampin. Yet the Sovaldi liaison who spoke with my husband's doctor, still claims no interference issues.  I just shook my head and  took him off it. One day later, he was literally blowing big bubbles out of his mouth of this long stringy white phlegm.
     These trials have so few "specially selected" people in them to raise the chances for  a successful outcome.  They exclude patients who have HE. How can they then predict what will happen when a patient with HE uses these drugs together? They admit that no testing had been done yet are certain there is no interference and expect us to accept that despite dealing with it everyday.  Crazy!

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317787 tn?1473358451
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