KosAbility is a community diary series posted at 5 PM ET every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
I’m not a doctor or health care provider, so please don’t take anything I say as ‘medical fact’. Most of my numbers and statistics come from the American Liver Foundation(ALF), SLU Liver Center, World Health Organization(WHO), and the CDC.
I’m writing this diary as a patient who has suffered from Hepatitis C, and was treated with Interferon and Ribavirin for one year to try and stop or diminish my liver damage. KosAbility is the place to share our insights, comments, and knowledge, so please help us expand our knowledge and feel free to join in the discussion in the comments below Sorry this diary is late...DK4 ate my original and I had to republish.
Hepatitis C (HCV) is sometimes called the Silent Epidemic. It affects 4-5 million people in the U.S. and many (up to 80% per ALF) don’t even know they have it. HCV is 5 times as widespread as HIV, yet it receives only a fraction of the funding of HIV. There is no vaccine, and about 75% of the people who are exposed become chronically ill, but may not show symptoms for years. About 25% of those chronically infected will progress to severe liver damage or liver cancer. A majority of liver transplants are due to HCV infection, and there are currently about 18,000 people in the U.S. waiting for a liver transplant. Each year, between 8-10,000 people in the U.S. die from HCV and HCV complications. The worldwide picture of HCV is even worse.. WHO says that over 200 million people are infected worldwide, which is about 3.3% of the population. Undeveloped countries tend to have higher rates of HCV. Africa has the highest rates of infection, with as much as 14.5% of Egyptians infected.
There was not even a test for Hepatitis C (HCV) until the early 1990’s, so if you had any medical procedure before that time, you may have been exposed to the HCV virus. Risk factors for HCV infection include the following per ALF:
• Anyone who ever injected or inhaled drugs (even once)
• Received a blood transfusion or organ transplant before July 1992
• Received a clotting factor made before 1987
• Have ever been on hemodialysis
• Have had abnormal ALT levels several times (on blood test results)
• Have ever worked or come in contact with infected needles or blood
• Have ever worked or been housed in a prison
• Were born to an HCV-infected mother
• Have HIV
• Have ever had unprotected sex (with multiple partners)
• Have ever had a sexually transmitted disease
• Have ever had tattoos or body piercings
In 1991, after giving blood to the Red Cross at work, I received a letter that said my blood could not be used because it tested positive for HCV. I had heard of HIV, but not HCV, so I went to my doctor with the letter. At the time, not much was known about HCV. My doctor told me not to worry about it, that I had probably been exposed at some time in the past and the test just showed I had the anti-bodies. The really weird thing about it was that 2 of my co-workers had received the same letter. We did not work in close contact (one was an elderly lady, the other a 20 year old man). The only thing the 3 of us had in common was that we all went to the same dentist. The dentist was an older man, and shortly after we received that letter, he closed his office and retired. I suspect he had not cleaned his equipment properly and may have infected many others.
During the mid 1990’s I began having many health problems, and my doctor sent me to specialists who decided I had depression, fibromyalgia and arthritis. In early 1998, I was visiting with our neighbor who was a doctor. He told me he could really tell the difference since I had started taking Prozac. Well, as I told him of some of my other health issues, he suddenly asked if I had ever been tested for HCV. Depression and fibromyalgia are common with those infected with HCV. I told him about the 1991 letter and my doctors response. He became very concerned and brought me over a ton of information on HCV. I hadn’t known that our neighbor worked at St Louis University Hospital with Dr Bruce Bacon, who was at the time treating Naomi Judd for HCV. Thank-you Dr. Presti for giving me the facts and getting me in to one of the best liver doctors in the U.S.
After tests and a liver biopsy, Dr. Bacon told me I was a good candidate for treatment. I had high liver enzymes, but I had a low viral load (the number of active virus in my system) . My biopsy showed fibrosis with some beginning cirrhosis. The problem was that at the time, treatment for HCV wasn’t covered by most insurance programs, since it was considered experimental . Dr. Bacon wrote letters to my insurance company and finally in 1999, I was approved for treatment. Many people have terrible side effects from the Interferon and Ribavirin treatment that I started in May of 1999. I had to inject myself 3 times a week with Interferon and take 6 Ribavirin pills per day for one year. I’m not even going to go into all of the side effects, but just say that some people tolerate it better than others. Today, one of the treatments is Pegylated Interferon with Ribavirin which I’m told is better. If you have HCV, know your options. They are coming up with new treatments and only you and your doctor can decided what's best for you.
One of the side effects of treatment can be depression. Since I had a history of depression and I was going through a divorce at the time, my doctors insisted that I go for outpatient counseling when I started treatment. Shortly after I started treatment, I was demoted from my job as Accounting Manager, even though I had filed for Family Medical Leave. In June 1999, I was told I no longer had a job because the company was sold and my office was shut down. I was having problems with depression, nausea and fatigue, but continued treatments. Then I started getting bills that my insurance company would not pay, like the outpatient counseling sessions that I had been told would be covered. When I saw Dr Bacon in Nov. 1999, he was concerned because he had not received my blood test results from the center where I was getting counseling. They had been taking my blood and told me they would get the test results to Dr. Bacon, but they hadn’t. Dr. Bacon took blood tests and said the treatment was working. I told him I’d been short of breath and having chest pains. He told me I needed to see a cardiologist and get back to see him in December. Well, I never made it back in December.
On December 6,1999, I was in Michigan visiting family when I collapsed at the checkout counter of a store. I had cardiac arrest about 6 times while at the hospital, and they decided I had sick sinus syndrome and needed a pacemaker. . Dr. Bacon wanted me to continue the HCV treatments. Now, I wonder if I had seen the cardiologist earlier, if that incident would have happened. I did have a grandparent who had cardiac arrest and needed a pacemaker, but I was only 45 years old when I got my pacemaker. I found out later that my insurance company didn't want to pay the bills from Michigan because I was 'out of network'. I wrote many about it, including the MO Department of Insurance. I was told that my ex-employer had been self-insured, and they had no jurisdiction over the matter. 1999 was the beginning of my financial downfall from which I have never recovered. I had excellent credit when 1999 began, but by 2000, I was deep in debt, sick, and unemployed.
Treatment for HCV is not cheap. It cost about $2500/mo for prescriptions, tests, and doctor visits when I was getting treatment. Insurance did cover some of it, but not all. I completed my treatment in May 2000 and was told they could no longer detect active virus in my system. My liver enzymes had returned to normal, I no longer had the dark smelly urine, and I was feeling better overall. I hoped that I would be one of the lucky ones who would completely clear the virus for good. Now, I must say that many believe you can cure HCV with herbal treatments and/or diet. I took Milk Thistle and other herbal remedies during the 90's and never cleared the virus. There are about 15 different strains of the virus and they are difficult to eliminate. The virus mutates and continues on scarring your liver. Some types of the virus are easier than others to treat, so it's important to find out what type of the virus you have.
When I moved to SW Missouri in 2000, there were no doctors in the area treating HCV. Today, there still is a lack of knowledge and few doctors who treat it in this area. I started having elevated liver enzymes again in the last couple of years. When I had insurance, I had asked my doctor to test to see if I was still clear of the virus, but I don't think he ever did. Insurance companies don't want to pay for these tests. When I was in Michigan for several months in 2009, MI Medicaid doctor told me I qualified for medical marijuana since I had HCV. I was shocked. Unfortunately, I had to return to Missouri where I don't qualify for much in the way of health care and MM is not legal. When I went in January of this year for an exam by a MO Medicaid doctor, she was concerned about my elevated liver enzymes. I hope it hasn't come back, but I fear it has at least scarred my liver for good.
We need more research and treatments to stem this epidemic. Many people thought I was a drug addict, because I had HCV. Maybe I got it in 1986, when an explosion blew me off our boat and I had 2nd and 3rd degree burns on my legs, with open sores for months. Maybe I got it from one of my surgeries or from the dentist. HCV shouldn't have this 'drug user' stigma; many innocents are infected. You need to learn the facts and adjust your life to eat and live a healthier lifestyle. Quit drinking alcohol!!! I know several who died from it because they wouldn't quit drinking. I admit, I do have a glass of wine occassionally(maybe once a month), so I won't preach anymore.
I do want to stress that HCV is NOT just related to injection drug use. The key is blood transfer of the virus and the virus lives a long life on surfaces that have contacted it. Dr. Bacon told me many were infected by snorting cocaine with the same straw or dollar bill as an infected person....indiscretions of youth, he called it. The nose has many blood vessels which burst and bleed when drugs are inhaled. Also, don't share toothbrushes, fingernail clippers, razors, etc. which may carry the virus. Be careful of that manicure/pedicure to ensure the implements have been properly sterilized. The same goes for tatoos and piercings, make sure it's done right with clean ink and equipment. Our prison population is greatly at risk due to drug use, shared razors, clippers, and violent behaviors that spread the virus. Lastly, I want to talk about sex. I've had two partners over the last 25 years. We didn't practice safe sex, but neither of my partners was ever infected. I've been told that normal sex, where there are no sores on either partner, and which is well lubricated should be safe. Transmission is through the blood, not through normal well lubricated sexual contact. This is a blood borne disease that isn't transmitted by casual contact.
The liver cleans our blood of toxins and helps our bodies process food we eat to survivve. it is our friend when it is working properly. When the liver is damaged, the scarring may result in decreased blood flow to vital organs and further health problems.
That's my story at this point. Let's hear yours or ask if you have questions.
Updated by ladypockt at Sun Mar 6, 2011, 08:02:13 PM
Sorry this was a mess. I still seem to be having problems with my poll, but at least the diary seems readable now.