The Positive Side

Spring/Summer 2005 

Me and My Liver

A cautionary tale about chemical hepatitis

By Gregory Robinson

JANUARY 2002. My year got off to a rocky start. I glanced up at the doctor from my hospital stretcher. He had a fateful look as he focused between me and the view from the scope that was down my throat. A physician myself, I recognized that look of surprise and fear. He hastily asked for my consent to tie off the bleeding and bulging varicose veins in my esophagus, which were threatening my life. I agreed with a nod of my head, unable to talk due to the obstructing tube.

It took a few more months and a biopsy to discover that the symptoms I’d been experiencing — the discomfort from an enlarged spleen; mildly elevated liver enzyme levels (2–3 times above normal, which is not uncommon in people with HIV); fatigue; nausea, vomiting, appetite and weight loss; and the gradual changes in my mental abilities (feeling confused and having trouble doing more than one task at a time) — were due to liver cirrhosis (permanent scarring of the liver). Though I didn’t have jaundice (a condition in which the skin and whites of the eyes turn yellow) that’s also seen in liver disease, many of my symptoms signalled that my liver may have been ailing. However, each of these symptoms could have been attributed to many other different things, such as side effects, other infections or cancer.

When the liver fails, scar tissue piles up (fibrosis, then cirrhosis) interfering with blood flow and function. The swollen, bleeding veins in my esophagus were due to my rock-hard liver preventing blood from flowing back to my heart. The backed-up pressure made the veins around my esophagus swell, as they’re used to getting the blood back to the heart. When this happens, eventually the veins blow up and there’s a high probability of bleeding to death. Was my time up?

Liver Lessons

This wasn’t the first time I’d had news of a fatal disease. I’ve had HIV for more than two decades. Because I was operating in survival mode and assumed I was going die from AIDS, for all these years I focused on maintaining my viral load and CD4 count, not worrying so much about other health issues. If these counts are ok, I thought, I’ll live on. However, when I was diagnosed with cirrhosis, my CD4 count was between 300 and 400 and I had an undetectable viral load. So much for that theory.

These days, many people with HIV/AIDS (PHAs) confront multiple health problems due to a combination of their HIV, other illnesses they may have and side effects from HIV treatment. The effects of long-term treatment with highly active antiretroviral therapy (HAART) are just becoming known as more of us are surviving longer and taking the medications for prolonged periods of time. It is increasingly recognized that many HIV meds have dramatic effects on our bodily organs. The liver is one of these organs.

Tucked into the lower right-hand corner of the ribcage, the liver is like a processing plant. It takes the raw materials (like food) that are absorbed from our gut and breaks them down (or metabolizes them) to make many of the basic nutrients for the cells of our body. We cannot survive without these liver-produced nutrients. The liver also has the important role of processing different substances we ingest — including medications, herbs, illicit drugs and alcohol — and then detoxifying and eliminating them.

Beast of Burden

Hepatitis means inflammation of the liver (hepat = liver; itis = inflammation). The liver can become inflamed due to a variety of reasons. There are two types of hepatitis that are common among PHAs:

  • chemical hepatitis — induced by substances such as medicines, herbs, alcohol, illicit drugs
  • viral hepatitis — predominantly caused by hepatitis A, B or C infection (hep C is the most common among PHAs)

Whether hepatitis is caused by chemical or infectious agents — and how severe and long the injury to the liver is — will determine if the liver can survive. The good news is that this organ can often regenerate itself even after it is insulted. Many forms of viral hepatitis can be treated with meds, but chemical hepatitis can only be “treated” by eliminating the cause(s) soon enough so that the inflammation subsides and cirrhosis doesn’t result. In people with chemical hepatitis, a liver that is not yet seriously damaged can restore cells to normal functioning in just a few months, a respite that a break from meds and/or other substances may allow. When the injury is too severe or has happened over a long period of time, eventually the inflammation causes cirrhosis. Once liver scarring occurs, it is permanent and not reversible. However, the liver can and does still function for a while in people with cirrhosis depending on how many liver cells are still working.

I’ve been on HIV meds for 15 years; for the past 10 years I’ve been taking four or more antiretrovirals. Many of these drugs on their own can be hard on the liver, so I can only imagine the effect of the mix of meds I’ve taken. Besides antiretrovirals (high doses of the protease inhibitors saquinavir and ritonavir as well as the nucleoside analogue ddI), some of the types of drugs I’ve been on include Lipidil (fenofibrate), for high lipid, or fat, levels; an antidepressant; and anti-inflammatory drugs, for arthritis — all of which are metabolized through the liver.

It is essential to maintain a healthy liver — it feeds our system and processes the multiple meds we take, including antiretrovirals and drugs for side effects and other diseases or infections. All of the substances our livers are exposed to become a burden on this vital organ. When your liver is burdened, you have to start thinking holistically about your health and everything that impacts your organs.

Testing 1, 2, 3

So how do you know if your liver’s taking a licking? To monitor the health of this organ, your doctor should regularly take blood tests to measure your liver enzymes. (It’s a good idea to have them checked a few weeks after you start any new drug and then at least every 3–4 months.) These enzymes leak from the liver into the blood when liver cells are damaged or killed. Liver enzyme tests do not measure how well the liver is working, they just indicate that it’s been injured by something.

If your doctor suspects a problem, he or she may do more detailed tests to see if the liver is performing its essential functions — making proteins, making clotting factors to stop bleeding when you’re injured, and processing and eliminating the waste product bilirubin. These tests include serum albumin, bleeding time and bilirubin, respectfully. They are done when your liver enzymes are either acutely elevated or if they remain elevated for a prolonged period of time. When these tests are affected, it’s a sign that the liver is failing to do its job.

If liver damage is confirmed, other tests are done to investigate the cause and determine the severity. These include abdominal ultrasound or CT scans to examine the size and appearance of the liver; blood tests for the cause of hepatitis; alpha-fetoprotein blood test (for liver cancer); and sometimes special tests for gallstones.

Liver transplant doctors use a grading system called the Child Pugh criteria to assess how well the liver is doing and if and when you should be listed for transplantation. The Child Pugh has three categories (A, B and C) and uses the blood tests albumin, bleeding time and bilirubin, along with changes in mental abilities and the presence of fluid in the abdomen (ascites). If you have advanced liver disease (cirrhosis) and your liver is still functioning fairly well, you are an A. When the liver shows signs of failure to function you progress to a B, a transplant is considered and you may be listed for transplantation. If you become a C, it is unlikely that you will survive.

Sometimes a liver biopsy is required, in which a needle is inserted through the skin into the liver to take a sample. A liver biopsy is necessary to diagnose cirrhosis and is used to assess the degree of liver scarring and inflammation. A liver specialist should explain the procedure to you, including the risks (such as internal bleeding), after-effects (pain), and the reason you need it. These risks can be minimized if the doctor has the right training and experience with this procedure and if you’re monitored in the hospital for a few hours after the biopsy. I sailed though my biopsy without pain or complications.

My biopsy confirmed that I had cirrhosis. All other tests led to an unknown cause for my liver disease (in medical lingo, this is referred to as “cryptogenic cirrhosis”). I do not have hepatitis A, B or C, nor was any other cause found — I don’t use street or recreational drugs and I’m not a heavy drinker. But I have been taking multiple medications for the past 15 years. It’s taken a few years for the doctors to reconsider my diagnosis and start to believe that the cause in my circumstances was chemical hepatitis.

Liver Spots

I’d like to think that my situation is unique and that no other PHAs will be so affected by their treatment. But I’m afraid this isn’t the case. Taking multiple meds — antiretrovials, antidepressants, cholesterol-lowering agents, anti-infective agents, over-the-counter drugs, herbs — is very common among PHAs. Many of our meds are now being found to have various adverse affects on our body organs (including our livers, pancreas, kidneys and heart). To further complicate liver health in PHAs are issues of alcohol and drug use, as well as the high prevalence of hepatitis B and C. If our organs fail, what are our hopes of getting a transplant? Not so good.

PHAs are not eligible for solid organ transplants (kidney, liver or heart) in Canada. This is a scary situation for those of us (and over time there may be many of us) who may need this medical treatment to survive. At the 2003 Conference on Retroviruses and Opportunistic Infections, U.S. researchers reported that PHA transplantees on stable and successful antiretroviral therapy do just as well as HIV-negative transplantees, with one-year survival rates of about 85 percent. So we Canadian PHAs have yet another battle on our hands — to get access to organ transplants. And we know it is possible: After much activism, organ transplants are now being done in PHAs in select clinics and hospitals in the U.S.

Getting Organ-ized

January 2005. I’m still here. Now I’m diligent when it comes to protecting my liver … and my heart, kidneys, and so on. Life is more than just viral load and CD4 count. I eat well to maintain my weight, consuming enough calories and protein. I exercise daily to maintain muscle mass and cardiovascular fitness. And I love yoga — it not only improves my well-being, it also expands my spiritual horizons. Yoga has changed my perspective. It inspired me to take hold of my health.

I avoid alcohol (except the rum balls at Christmas) and drugs, and I take over-the-counter meds only after discussion with my doctors. Most importantly, I work more closely with my primary care physician and various specialists to tailor my meds to avoid further side effects to my bodily organs. For the past three years I’ve been on an HIV drug regimen that reduces the burden on my liver.

I take daily multivitamin and mineral supplements. Some PHAs support the liver with nutrients that raise levels of glutathione (a major antioxidant in the liver cells) — antioxidants such as NAC (N-acetyl cysteine), alpha-lipoic acid and vitamins C and E. Some do acupuncture or take certain herbal therapies, such as silymarin (milk thistle extract). Much more is written about these therapies and other ways to protect your liver in “13 Ways to Love Your Liver” (The Positive Side, spring/summer 2002).

I’ve outlived the highest risk of bleeding to death, although I need regular examinations of my esophagus to tie off the veins that pop up. My liver enzymes have returned to normal since I switched some of my daily HIV and other meds and, so far, my Child Pugh remains in the A category. So, while I don’t need a liver transplant just yet, I may in the future. I’m hoping that with my new approach I can stall or even eliminate my need for a transplant. In the meantime, I’m busy trying to push for our right to access a lifesaving medical treatment — solid organ transplants — a modern-day dilemma to an age-old problem in AIDS activism.

Greg Robinson, MD, is a doctor in public health and community medicine who is on disability. He now does volunteer work, like writing this article. He lives in Toronto with his long-term partner and his wonderful Westie.


Organ Grinders

All meds have the potential to cause liver side effects, including the following, which are commonly used by PHAs:

  • all antiretrovirals carry a risk of liver damage — the risk is greater with ddI (Videx) and d4T (Zerit), nevirapine (Viramune) and full-dose ritonavir (Norvir)
  • antibiotics — trimethoprim-sulfamethoxazole (Bactrim/Septra), isoniazid and rifampin (both for tuberculosis)
  • statins and fibrates, used to help lower cholesterol and lipid levels
  • acetaminophen (Tylenol; found in many over-the-counter pain relievers), primarily when used in high doses with alcohol
  • some psychiatric meds
  • some cancer chemotherapy drugs
  • many anti-hypertensive agents used to control blood pressure
  • amiodarone and some other cardiovascular drugs
  • antidiabetic agents
  • estrogen
  • anabolic steroids
  • alcohol
  • street and recreational drugs (such as heroin, cocaine, ecstasy)
  • some herbs and herbal teas (comfrey, Kava)

If you use any of these, have your liver enzyme levels checked regularly.

Screen Test

When your liver is inflamed, how do you decide whether to switch, stop or stick with your meds? Though all six liver markers should be taken into account, here is a rough guide to one important liver enzyme, alanine aminotransferase (ALT): ALT below 40 is safe; minimal elevation above 40 is unlikely to be significant; anywhere between 200 and 600 is dangerous. It is rare and controversial to stay on meds if this enzyme count rises above 600.

Check your liver function at least every 8 weeks for warning signs of damage. Any value above normal may mean your liver is experiencing stress and that you should start taking steps to care for it. Values 3–5 times the upper end of normal may signal a red alert; consult your doctor right away. Note: Each lab has its own scale, so numbers may vary slightly.

AST (aspartate aminotransferase, sometimes called SGOT) a liver, heart and muscle enzyme 10 to 40 IU/l
ALT (alanine aminotransferase, sometimes called SPGT) a liver enzyme 10 to 30 U/ml
ALP (alkaline phosphatase) a liver and bone enzyme 20 to 90 IU/l
GGT (gamma glutamyl transferase) an enzyme present in bile and blood 5 to 37 u/l
Bilirubin a waste product of red blood cells, processed in the liver total 0.1 to 1.2 mg/dl
LDH (lactic dehydrogenase) heart, liver, kidney, brain, lung and muscle enzyme total 80 to 120 IU/l
Chart from POZ, September 2000. Reprinted with permission. Copyright 2000. CDM Publishing LLC.