The Effect of Cirrhosis on the Brain

Several months prior to my transplant I began experiencing "brain fog," or hepatic encephalopathy, which the US National Library of Medicine defines as, "... a worsening of brain function that occurs when the liver is no longer able to remove toxic substances in the blood." Among the symptoms are change in sleep patterns, mild confusion, forgetfulness, mental fogginess, personality or mood changes, and poor concentration. Symptoms may become severe and life-threatening.

What is the lasting impact of hepatic encephalopathy on the brain? Doctors in Spain and Italy conducted preliminary research on this topic in a study published in the September 2011 issue of Journal of Hepatology. Researchers used advanced magnetic resonance imaging and Voxed based Morphometry analysis to assess brain tissue density of 51 healthy subjects and 48 patients with cirrhosis.

The researchers reported the following results:

Patients with cirrhosis presented decreased brain density in many areas of the grey and white matter. The extension and size of the affected areas were greater in patients with alcoholic cirrhosis than in those with post-hepatitic cirrhosis and correlated directly with the degree of liver failure and cerebral dysfunction (as estimated by neuropsychological tests and the antecedent of overt hepatic encephalopathy). Twelve additional patients with cirrhosis who underwent liver transplantation were explored after a median time of 11 months (7–50 months) after liver transplant... Compared to healthy subjects, liver transplant patients showed areas of reduced brain density in both grey and white matter.

The doctors concluded, "... the loss of brain tissue density is common in cirrhosis, progresses during the course of the disease, is greater in patients with history of hepatic encephalopathy, and persists after liver transplantation."

This study isn't definitive, given the small sample size, yet should lead to further research. Nonetheless, it's troubling information for those of us with cirrhosis. At the same time, it explains a lot. When I become forgetful, I don't just have to use my usual excuses - advancing age, menopause - and can simply blame it on liver disease.

Image courtesy of The New York Public Library. www.nypl.org

Whew! My Lab Results Improve

Last week it was time to have blood work done again and I'm SO pleased to say that, for the most part, the numbers look much better. My MELD score, which was 9 two months ago and 12 last month, dropped to 8. What a relief!

My AFP test rose from 106 to 137, but I'm still not worried at this point. It would have to rise to the 400 to 500+ before I start wringing my hands.

My heptologist, a fabulous doctor, called me personally to tell me the results and discuss what's next. First, I'm going to take metformin again to help control my blood sugar. And in a month or so, I'll probably switch from prograf to cyclosporine. This change will make it possible for me to take one of the new Hep C meds, if they become available to transplant patients. I'm not sure whether I'll want to take the meds, but I'll ponder that matter if and when the opportunity arises.

In the meantime the docs will monitor my MELD score and AFP test results, and I'll be on the lookout for any signs of ascites (edema), varices (esophageal bleeding) and encephalopathy (I refer to it as "liver dementia"), which are indications of advanced cirrhosis. Mostly, though, I will enjoy this world and the people in it.

What I Wouldn't Give for a Good Night's Sleep...

Chamomile tea, a nice warm bath, counting sheep - when it comes to sleep, you name it, I've tried it. But insomnia still dogs me, as it has since I was diagnosed with end-stage liver disease and told that I needed a transplant. While everyone else slumbers, I'm awake and watching TV, tired but unable to sleep. Often, it isn't until 5 or 6 a.m. that I doze off, not restfully, feeling uncomfortable about all the things I'm missing as I sleep the day away... and then the cycle repeats itself.

I've come to learn that I'm not alone. A PubMed article, "Role of Sleep Disturbance in Chronic Hepatitis C Infection," posted on the National Center for Biotechnology Information, U.S. National Library of Medicine website, reveals the following:

Chronic infection with the hepatitis C virus (CHC) is associated with physical and mental symptoms including fatigue and depression that adversely affect quality of life. A related complaint, sleep disturbance, has received little attention in the literature, with the exception of sleep changes noted in cirrhosis and end-stage liver disease. We present an overview of studies indicating sleep problems in patients with CHC, with about 60% to 65% of individuals reporting such complaints. Evidence suggests that impairments in sleep quality exist independent of antiviral therapy with interferon-α and prior to advanced stages of liver disease. Further investigation of sleep disturbance in CHC patients with a mild stage of liver disease may provide important information on disease course as well as allow additional opportunities for patient support.

Unfortunately, there is no "cure" for insomnia; experts stress the importance of working with your doctor to find a solution. A Guide to Hepatitis C, Treatment Side Effect Management, is a fact sheet on the HCV Advocate website that offers basic suggestions to address insomnia, including the following:

• Make eight hours of sleep a regular habit. Sleeping less during the week and trying to catch up on the weekend doesn’t work

• Try to go to bed at the same time every night

• If you have a clock that is always lit, turn it so you can’t see the time

• Exercise every day

• If you nap, keep it short and early in the day

• Try reading before bedtime, but use a low-watt bulb

• Do not eat during the few hours before bedtime, but don’t go to bed hungry. If you eat something, choose food that is light and nutritious. Avoid spicy or greasy foods

• Take a hot bath before retiring

• If you feel you need to worry, tell yourself that you will only worry in the daytime. Make your bedroom a fret-free zone. Learn relaxation techniques to reduce stress and worrying

• Listen to relaxation tapes before retiring

• Do not lay awake in bed for more than 20 to 30 minutes. Get up, do something boring for a little while, and then go back to bed

• Your bed is for sleep and sex. If you are not doing either of these, stay out of bed

Hopefully, some of these tips will help. Here's wishing Sweet Dreams for us all.

Photo by Philippe Ramakers

What You Should Know About Liver Cancer

Hepatocellular carcinoma, or liver cancer, is something that's crossed my mind - wondering if I might ever have it - but I've never sought information about it, until now, that is. The US Department of Veterans Affair website offers information about liver cancer, including this list of "Things to know about liver cancer:"

* Liver cancer can cause death in a person with cirrhosis.

* Patients with cirrhosis resulting from any cause, including hepatitis C, hepatitis B, and alcohol use, have a greater risk of developing liver cancer.

* Liver cancer is one of the most common cancers in the world, especially in Asia and Africa, and it is becoming increasingly common in the United States.

* Biopsy refers to extracting a small sample of tissue with a hollow needle and testing it for liver cancer. A biopsy is sometimes needed to make a diagnosis, but imaging and blood tests can usually determine whether liver cancer is present. Biopsies of liver masses can be difficult to perform and there are some risks involved.

* Liver cancer can be treated if it is detected early, but the treatment is very specialized. Patients should discuss the details thoroughly with their health care providers.

* One excellent treatment for early-stage liver cancer is a liver transplant. This is a complicated form of treatment, because a patient first needs to be a good candidate for a liver transplant, then be evaluated at a liver transplant center and placed on a waiting list, and finally, be well enough to undergo a transplant when a donated liver becomes available.

According to the U.S. National Library of Medicine, which is overseen by the National Institutes of Health, "The (prognosis for liver cancer) is poor, because only 10 - 20% of hepatocellular carcinomas can be removed completely using surgery. If the cancer cannot be completely removed, the disease is usually fatal within 3 - 6 months. However, survival can vary, and occasionally people will survive much longer than 6 months."

Photo by Andrew Richards

Liver Cancer? Hepatitis C and the Alpha-Fetoprotein (AFP) Blood Test

In my August 12, 2011 post about the results of my recent blood tests, I mentioned the alarmingly elevated level of a new blood test that my doc ordered - the Alpha-Fetoprotein (AFP) test - which is an indicator of liver cancer. When I heard "AFP" I thought of a blood test I took when I was pregnant with both of my children. I've learned that the tests are one and the same.

According to an article from Gastroenterol that was cited on HCV Advocate’s hepatitis blog:

Alfa-fetoprotein (AFP) is a blood test that is used widely to detect abnormalities that may be an indication of the presence of certain types of cancers... In viral hepatitis it is a test used to indicate liver cancer... In people with chronic hepatitis C most providers will generally start monitoring for liver cancer using the AFP test and liver imaging once someone has developed severe fibrosis or cirrhosis.

As I continued my search for information about the AFP test, liver cancer and how to interpret AFP test results for people like me who have Hepatitis C and a cirrhotic liver, I found a web page about hepatic tumors written by D. Montgomery Bissell, MD, for Gastroenterology students at the University of California, San Francisco. He stated the following:

As a surveillance tool, AFP is readily available and inexpensive but has many limitations. Its specificity is poor, particularly in patients with chronic hepatitis C, in whom the value often exceeds normal (in the 5-100 range, presumably on the basis of regenerative activity). False negative results are not infrequent, which is the reason for including basic imaging in routine HCC surveillance. The utility of AFP is largely two-fold: (1) A progressively rising value has much greater specificity than a single test and requires a search for HCC; (2) AFP >500 is assumed to reflect HCC even if imaging is negative, and qualifies for transplant listing. Also, a very high AFP (>1000) suggests vascular invasion and metastasis.

Given this information, my AFP test result of 106, when the normal range is about 0 - 8, isn't something I need to be concerned about today. If the level continues to rise... well, we'll cross that bridge if we ever get to it.

Photo by Franco Giovanella, www.fotolog.net/giovanella

Tackling the Itch: A Medication That Worked and the Skin Products That Helped Most

For many weeks I've been vexed by severe itching. The condition is called pruritis and it's caused by my poorly functioning liver. The two meds I tried so far didn't work, so my doc prescribed a third: Cholestryramine. At last, we found something that works! What a relief. Few things are more uncomfortable than incessant itching and I'm very grateful for relief.

Note: Mark left a comment on my June 24, 2011 blog post, recommending Cholestyramine. You were right - thank you for your suggestion!

Pruritis is a condition that isn't alleviated by topical treatments. Calamine lotion and products like it are ineffective. Nonetheless, I kept my skin well moisturized - why run the risk of dry skin itch compounding the existing pruritis, right?

Here are the moisturizing products that I've been using, all of which I highly recommend:

Skin Free makes my favorite skin care products. They're super-rich without being oily. The body balm is a great all-over moisturizer that I usually apply in the shower before toweling dry after bathing. And the butter stick is the best smelling moisturizer I've ever used.

My every-day, all-day-long lotion is made by Gold Bond. Obviously, Gold Bond isn't just for just for jock itch. I use the Ultimate Healing Skin Therapy Lotion. As the company states, this lotion has "... aloe to heal dry, problem skin." It's the thickest lotion I've ever used and while it costs more than other brands, to me it's well worth the money.

Lastly, I recommend Eucerin. I first used the Original Moisturizing Creme in the hospital after my liver transplant, when it was given to me by docs. I was told to put it on my lips, which were scraped and terribly scabbed by tape used to hold tubes in place. It was very healing and I'm happy to say that my lips are as good as new.

My Blood Test Results Don't Make Sense

At the beginning of the week I had blood drawn and today I received a copy of the results. Some of the numbers were alarming and others had me shaking my head in disbelief.

The good news - most of the tests in my hepatic function panel (ALT, AST, GGT, etc.) are better than they've been in ages. Seriously? My liver is cirrhotic, but on paper, these tests indicate that it's doing fairly well (for me, that is - it's all relative).

Other results aren't so wonderful. My MELD score has increased to 12, a jump of three points in five weeks. The docs are chalking it up to an elevation in bilirubin and don't seem too concerned. I'm praying that it's not a trend.

Additionally, my doc is running more tests now, one of which is AFP serum (it indicates the presence liver tumors). The normal range is 0 - 8.3 and mine is 106.2. ONE ZERO SIX POINT TWO. Holy crap! My doc believes the number is elevated because of my aggressive Hep C, not because I have a tumor. Six weeks ago I had two CT scans and neither showed a tumor, which is a good sign. But I'd be lying if I didn't admit that I nearly fell off of my chair when I saw that result. I'm grateful that it had been explained to me before I saw the results.

Up next: More blood work in three weeks and an endoscopy (where a scope is run down my esophagus). And I'm not certain what else, but I'll keep you posted.

Photo by Heidi Marasigan