The Silent Killer

Hepatitis C, also know as the Silent Killer, HCV, or the Yellow Dragon. People fighting Hepatitis C are called Dragon Slayers, or, they are considered to be "Fighting the Dragon".

As most of you know I am currently infected with Hepatitis C. I want to take this opportunity to share some facts on the disease and appreciate everyone who takes the time to read this and apologize in advance for any repetitiveness it may be for some.

Some background Info
(HCV) Hepatitis C infects 1 in 4 Chinese. 4.8 million Americans are infected (over twice the amount of those with HIV.) Yet very few people even know what it is or the differences between the 7 different types of Hepatitis. There are several subtypes called genotypes of the C virus and fortunately the most common type in Asia causes the least damage and is easiest to treat. Unfortunately the most common genotypes in the U.S. are 1a and 1b and are the most deadly and difficult to treat.

Even family physicians are naïve to the virus. There is no automatic testing in routine blood work or CBC's (complete blood counts). The Red Cross and other Blood Banks do the only automatic screening. What regular doctors may test for are elevated liver enzymes ALT's and AST's, enzymes the liver secretes when the liver cells are dying. Unfortunately this test is not accurate because many people with normal range enzymes may have a damaged liver so Hepatitis C often goes undetected for years, 25 years in my case. This is a shame when it is now known that the virus, or at least antibodies created to attempt fighting the virus are detectable in as little as two weeks from initial infection.

Hepatitis C kills 12,000 Americans annually. Many of those did not find out they were infected until it was too late and didn't make a transplant list in time.

Another shameful fact: David Crosby, Mickey Mantle and a few other famous people had Hepatitic C (a fact little known) and their conditions were aggravated by alcoholism and both received liver transplants. The sad part is people who drink alcohol are usually not put on transplant list but in the case of these two, they were. Fame and money buys it, I guess, while some indigent person without insurance who takes care of themselves and dies waiting at the bottom of a list.

Facts on Hepatitis 
There are several different types. The word Hepatitis simply refers to a swollen liver.

A,B and C are the most common types. A is transmitted through food exposed to waste and most fight it off often without knowing they had it. A person who has been infected with A can still donate blood, tissue and organs.

B is a little more sever and is passed through blood, body fluids and needles and is usually associated with adult Jaundice and making the infected person very ill. B is passed very easily from person to person but most fight it off with their own bodies, few cases go chronic and when they do it is easy to treat these days. There are Vaccines available for both A and B and many states now require the vaccines for children in order to enter public schools. Someone who has been infected with b or carries the antibodies in their blood may not donate blood, organs or body tissues.

HCV is the most deadly, hardest to detect and diagnose and also the most common, yet it is the hardest of the three to spread. The virus, especially genotypes 1a and 1b often mutate making it extremely difficult to treat. Once antibodies are detected blood, tissue and organs may never be donated.

Transmission of HCV
HCV is rarely passed through oral sex, never through casual contact or kissing and seldom through normal sex. Anal sex raises the chances of transmission slightly. If a woman is menstruating then the chances of contamination are increased.

Basically HCV is transmitted blood to blood. Those at risk or those who had blood transfusions are received whole blood products prior to 1987 (before testing). This is the most common way it was spread for those who have had the virus for over 15 years.

It is also easily spread by sharing of needles and is the most common form of transmission for new cases today. This has added a stigma to the disease and some call it the junkie disease and is often associated with HIV because many people who are infected with HIV through needle sharing also have Hepatitis C. This makes many people ashamed to admit they have it and maybe one reason the disease has not received the publicity it deserves, sort of how the government held back HIV studies, grants and money for research because it was just a "gay disease" in the beginning. Very wrong thinking in my opinion.

HCV can be transmitted through body piercing and tattoos. Sterilization methods need improvement. What many tattoo artist don't realize is that even if they changes needles between clients the ink can carry the virus and sticking a new needle in a partially used bottle of ink can spread the virus. The virus can live in liquid for up to 14 days So, if contemplating a tattoo, demand a clean needle and fresh ink.

Sharing of a toothbrush can also spread the disease as well as razors but this is uncommon.

Additional Facts
48% of people infected do not know how they were infected and/or don't remember a risk factor or possibly afraid to admit the used IV drugs even once. Some Doctors do discriminate against people if they used IV drugs, even once years before.

80- 90% of cases chronic.

HCV is the single leading cause of liver transplants.

The Center for Disease Control does not recommend the use of condoms for monogamous couples, only for those with multiple partners. If a person has genital herpes they stand a much higher chance of spreading the virus as well.

Risk Groups
IV drug users who share needles
Fireman and EMT's
Nurses/medical technicians.
Those who receive tattoos and/or body piercing.
People who received blood products, transfusions or plasma prior to 1987.

While traces of the C virus has been found in tears, saliva, semen, vaginal fluids it is rarely in large enough amounts to infect another person, but a single droplet of blood can carry enough to infect several people.

The liver, while the most resilient organ in the body (you can remove half of it and it will regenerate) HCV does not allow the liver to heal itself and damages the liver itself starting with swelling and progresses to Fibrosis (partial scaring) and Cirrhosis (complete scarring and irreversible). Once a person's liver has gone cirrhotic treatment is seldom helpful and a transplant is usually in order because it will most likely lead to end stage liver disease and eventually death. HCV may also lead to liver cancer. Double whammy there.

The main thing about Chronic Hepatitis C is that it is a slow progressing disease, though hard to detect, if caught in earlier stages treatment tends to be more successful, 20-40% go into remission with treatment. Some naïve doctors will say cured but most Hepatolgist and Gastroenterolgist are reluctant to use the word cured, permanent remission is the term they like to use. Usually if the virus does come back the person will die with the virus instead of from it because of the slow moving pace of the virus's destruction.

As I said earlier, the main problem is awareness and diagnosis. Because the virus is near epidemic proportions testing for antibodies to HCV should be automatic with routine blood work, especially those in risk groups. The initial test are easy and expensive to do and there are even now starting home kits for testing, even though the blood samples still have to be sent of to a lab.

Being tested
If a person is found to have HCV antibodies in their blood the next step is a supplemental test to confirm the results. The RED Cross then uses a Nucleic Acid Test (NAT) to detect the actual virus in the blood. If all three test come back positive the person is not only infected but most likely has the active virus working on their liver. If the NAT test comes back negative but the initial antibodies test and supplemental test come back positive the person either had the active virus and fought it off (rare) or the virus is dormant or very slowly destroying the liver. At this point one should seek out a Hepatoligist, a Gastroenterologist or an Infectious Disease specialist. The important thing is to find a doctor with experience treating the virus.

A specialist will then order more complete blood test, liver panel test, and lipid tests. They will also order a viral load count, or at least they should. The viral load done by Polymer Chain Reaction (PCR) shows how much the actual virus is replicating in the blood. The combination of liver enzymes and viral load may prompt the doctor to order a liver biopsy. If the doctor does not order a liver biopsy the person should seek out another doctor. The main reason for this is enzymes fluctuate as does the viral load and as long as the virus is shown to be active it is important to assess the amount of liver damage. The only way to do this is by way of a biopsy. The reason a say a biopsy is necessary is because if there is no liver damage the treatment can actually do more damage than good.

The most common form of Biopsy is a needle Biopsy. They use a tiny incision to mark the proper space between two ribs on the right side of the body. They then press a metal tube to the incision. The tube contains the Biopsy needle that is quickly slammed into the liver and rapidly pulled out. Relatively painless, some burning a hard to catch your breath but usually after ten minutes no discomfort. They make you lay on your side for four hours afterwards to make sure there is no internal bleeding. A person who has had a liver biopsy may feel fine later that day and the next day but should take it very easy. In my case I worked the next day and ended up driving myself to the hospital at 1:00 in the morning with very severe pain in my liver region and shortness of breath. I had to have an anti-inflammatory fed into me intravenously, a CT Scan to check for internal bleeding or unusual swelling, and finally Percacettes for pain. I rested the next day this time and was fine. Once the biopsy results are complete the damage assessed, then a course of treatment is decided on. Damage is rated on a scale of 0-4. 0 being no damage, 4 being adios liver. I myself was a grade two closely approaching grade three. Prime candidate for treatment because of the amount of damage and my age (38). If I was twenty years older treatment would be something I may not have considered.

Symptoms of Hepatitis C
Flu like symptoms that linger. Headaches, joint aches and muscle cramps. Extreme fatigue. Jaundice is rare with HCV. Moodiness and depression are also signs. Unexplained anger or rage is not uncommon. Moderate to severe abdominal pain may also occur. Unfortunately these are symptoms for many diseases which makes it that much more difficult to diagnose. I had noticeable symptoms for 5 years prior to diagnosis, went to many doctors, one who even felt swelling but because of family history thought my gallbladder needed removing. Also the only approved treatment often makes these symptoms even worse with many additional side effects. I was often sent home from doctors and emergency rooms with a bottle of Maalox, I was not taken seriously even though I explained to doctors I had been through several surgeries in my life including a very painful spinal fusion operation and that I knew the difference between gas pain and severe pain

I hope this long-winded post will open some eyes to a very real problem and costly disease. I know there are many good causes out there, cancer, breast cancer, colon cancer, HIV, MS, Cystic Fibrosis and all are very worthy but more research is needed for the silent killer that infects so many people and cost insurance companies, tax payers and individuals billions of dollars each year, more than almost any other disease. The treatments have a low success rate and there are many silent sufferers, you may know some, maybe not but they are out there. I figured that if all the people infected moved to Atlanta GA metro area and all non-infected people moved out the population of metro Atlanta would actually increase by a million people. Scary thought.

Summary
If invited back to continue this post I will do a part two sharing my experiences and those of others in dealing with the treatment and dealing with liver transplants. I feel that this has already become to long. In the meantime I will continue my awareness crusade. In May the Hepatitis C Education & Support Network, Inc is sponsoring a forum with the nations top specialist and I have been invited to participate as a patient sharing my experience. I have had some unique reactions to the treatment and other problems arising from it and several groups, including reports to the FDA, are currently monitoring me. I hope in some way that I can help make a difference. I have become very vocal and though I will never have the impact that Naomi Judd had I will do my best to do my part.

I want to thank Cheryl for allowing me to use this forum to help raise awareness and those who read this for their understanding. I welcome any comments and suggestions and apologize for spelling or grammatical errors and my famous run-on sentences.

Bill

This is what the actual Virus is believed to look like.