Thursday, April 8, 2010
Geno 1's CAN clear! by Carolyn
Carolyn Diagnosed age 42 grade 1 stage 2 VL 6,170,000 Genotye 1a. Did treatment for 48 weeks. Difficult but a positive support system was major factor. Just today in fact, my 1 year EOT results came back. I am still clear. I'm going to go ahead and call it cured. Geno 1's CAN clear!
Wednesday, April 7, 2010
Beautiful Flower In A Broken Pot by Donna
Our house was directly across the street from the clinic entrance of Johns Hopkins Hospital in Baltimore. We lived downstairs and rented the upstairs rooms to out patients at the clinic.
One summer evening as I was fixing supper, there was a knock at the door. I opened it to see a truly awful looking man. "Why, he's hardly taller than my 8-year-old," I thought as I stared at the stooped, shriveled body. But the appalling thing was his face, lopsided from swelling, red and raw.
Yet his voice was pleasant as he said, "Good evening. I've come to see if you've a room for just one night. I came for a treatment this morning from the eastern shore, and there's no bus 'til morning."
He told me he'd been hunting for a room since noon but with no success, no one seemed to have a room. "I guess it's my face ... I know it looks terrible, but my doctor says with a few more treatments ..."
For a moment I hesitated, but his next words convinced me: "I could sleep in this rocking chair on the porch. My bus leaves early in the morning."
I told him we would find him a bed, but to rest on the porch. I went inside and finished getting supper. When we were ready, I asked the old man if he would join us. "No, thank you. I have plenty." And he held up a brown paper bag.
When I had finished the dishes, I went out on the porch to talk with him a few minutes. It didn't take a long time to see that this old man had an oversized heart crowded into that tiny body. He told me he fished for a living to support his daughter, her 5 children, and her husband, who was hopelessly crippled from a back injury.
He didn't tell it by way of complaint; in fact, every other sentence was preface with a thanks to God for a blessing. He was grateful that no pain accompanied his disease, which was apparently a form of skin cancer. He thanked God for giving him the strength to keep going.
At bedtime, we put a camp cot in the children's room for him. When I got up in the morning, the bed linens were neatly folded and the little man was out on the porch.
He refused breakfast, but just before he left for his bus, haltingly, as if asking a great favor, he said, "Could I please come back and stay the next time I have a treatment? I won't put you out a bit. I can sleep fine in a chair." He paused a moment and then added, "Your children made me feel at home. Grownups are bothered by my face, but children don't seem to mind.."
I told him he was welcome to come again.
And, on his next trip, he arrived a little after 7 in the morning. As a gift, he brought a big fish and a quart of the largest oysters I had ever seen! He said he had shucked them that morning before he left so that they'd be nice and fresh. I knew his bus left at 4:00 a.m. and I wondered what time he had to get up in order to do this for us.
In the years he came to stay overnight with us, there was never a time that he did not bring us fish or oysters or vegetables from his garden.
Other times we received packages in the mail, always by special delivery; fish and oysters packed in a box of fresh young spinach or kale, every leaf carefully washed. Knowing that he must walk 3 miles to mail these, and knowing how little money he had made the gifts doubly precious.
When I received these little remembrances, I often thought of a comment our next-door neighbor made after he left that first morning.
"Did you keep that awful looking man last night? I turned him away! You can lose roomers by putting up such people!"
Maybe we did lose roomers once or twice. But, oh!, if only they could have known him, perhaps their illnesses would have been easier to bear.
I know our family always will be grateful to have known him; from him we learned what it was to accept the bad without complaint and the good with gratitude to God.
Recently I was visiting a friend, who has a greenhouse, as she showed me her flowers, we came to the most beautiful one of all, a golden chrysanthemum, bursting with blooms. But to my great surprise, it was growing in an old dented, rusty bucket. I thought to myself, "If this were my plant, I'd put it in the loveliest container I had!"
My friend changed my mind. "I ran short of pots," she explained, "and knowing how beautiful this one would be, I thought it wouldn't mind starting out in this old pail. It's just for a little while, till I can put it out in the garden."
She must have wondered why I laughed so delightedly, but I was imagining just such a scene in heaven.
"Here's an especially beautiful one," God might have said when he came to the soul of the sweet old fisherman. "He won't mind starting in this small body."
All this happened long ago - and now, in God's garden, how tall this lovely soul must stand.
The LORD does not look at the things man looks at. Man looks at the outward appearance, but the LORD looks at the heart." (1 Samuel 16:7b)
Friends are very special. They make you smile and encourage you to succeed. They lend an ear and they share a word of praise. Show your friends how much you care. Pass this on, and brighten someone's day.
Nothing will happen if you do not decide to pass it along. The only thing that will happen if you DO pass it on is that someone might smile (because of you).
PLEASE, HAVE A WONDERFUL DAY!
One summer evening as I was fixing supper, there was a knock at the door. I opened it to see a truly awful looking man. "Why, he's hardly taller than my 8-year-old," I thought as I stared at the stooped, shriveled body. But the appalling thing was his face, lopsided from swelling, red and raw.
Yet his voice was pleasant as he said, "Good evening. I've come to see if you've a room for just one night. I came for a treatment this morning from the eastern shore, and there's no bus 'til morning."
He told me he'd been hunting for a room since noon but with no success, no one seemed to have a room. "I guess it's my face ... I know it looks terrible, but my doctor says with a few more treatments ..."
For a moment I hesitated, but his next words convinced me: "I could sleep in this rocking chair on the porch. My bus leaves early in the morning."
I told him we would find him a bed, but to rest on the porch. I went inside and finished getting supper. When we were ready, I asked the old man if he would join us. "No, thank you. I have plenty." And he held up a brown paper bag.
When I had finished the dishes, I went out on the porch to talk with him a few minutes. It didn't take a long time to see that this old man had an oversized heart crowded into that tiny body. He told me he fished for a living to support his daughter, her 5 children, and her husband, who was hopelessly crippled from a back injury.
He didn't tell it by way of complaint; in fact, every other sentence was preface with a thanks to God for a blessing. He was grateful that no pain accompanied his disease, which was apparently a form of skin cancer. He thanked God for giving him the strength to keep going.
At bedtime, we put a camp cot in the children's room for him. When I got up in the morning, the bed linens were neatly folded and the little man was out on the porch.
He refused breakfast, but just before he left for his bus, haltingly, as if asking a great favor, he said, "Could I please come back and stay the next time I have a treatment? I won't put you out a bit. I can sleep fine in a chair." He paused a moment and then added, "Your children made me feel at home. Grownups are bothered by my face, but children don't seem to mind.."
I told him he was welcome to come again.
And, on his next trip, he arrived a little after 7 in the morning. As a gift, he brought a big fish and a quart of the largest oysters I had ever seen! He said he had shucked them that morning before he left so that they'd be nice and fresh. I knew his bus left at 4:00 a.m. and I wondered what time he had to get up in order to do this for us.
In the years he came to stay overnight with us, there was never a time that he did not bring us fish or oysters or vegetables from his garden.
Other times we received packages in the mail, always by special delivery; fish and oysters packed in a box of fresh young spinach or kale, every leaf carefully washed. Knowing that he must walk 3 miles to mail these, and knowing how little money he had made the gifts doubly precious.
When I received these little remembrances, I often thought of a comment our next-door neighbor made after he left that first morning.
"Did you keep that awful looking man last night? I turned him away! You can lose roomers by putting up such people!"
Maybe we did lose roomers once or twice. But, oh!, if only they could have known him, perhaps their illnesses would have been easier to bear.
I know our family always will be grateful to have known him; from him we learned what it was to accept the bad without complaint and the good with gratitude to God.
Recently I was visiting a friend, who has a greenhouse, as she showed me her flowers, we came to the most beautiful one of all, a golden chrysanthemum, bursting with blooms. But to my great surprise, it was growing in an old dented, rusty bucket. I thought to myself, "If this were my plant, I'd put it in the loveliest container I had!"
My friend changed my mind. "I ran short of pots," she explained, "and knowing how beautiful this one would be, I thought it wouldn't mind starting out in this old pail. It's just for a little while, till I can put it out in the garden."
She must have wondered why I laughed so delightedly, but I was imagining just such a scene in heaven.
"Here's an especially beautiful one," God might have said when he came to the soul of the sweet old fisherman. "He won't mind starting in this small body."
All this happened long ago - and now, in God's garden, how tall this lovely soul must stand.
The LORD does not look at the things man looks at. Man looks at the outward appearance, but the LORD looks at the heart." (1 Samuel 16:7b)
Friends are very special. They make you smile and encourage you to succeed. They lend an ear and they share a word of praise. Show your friends how much you care. Pass this on, and brighten someone's day.
Nothing will happen if you do not decide to pass it along. The only thing that will happen if you DO pass it on is that someone might smile (because of you).
PLEASE, HAVE A WONDERFUL DAY!
Tuesday, April 6, 2010
Melinda's Story
Hi I am 36 years old and live in Virginia. I found out I was hep c positive in Jan 2001. I had been having problems with my liver enzymes being elevated up to 169 for the alt's and 122 for the ast's. I suffer from chronic pain and fatigue. Doctors can't seem to make up their minds if I have fibromyalgia. I also suffer from sjogrens syndrome. I have already had one salivary gland and lymph node removed in my neck. Very painful surgery. They thought it was a mass. Came back with chronic inflammation and infections. I had my liver biopsy and was very sad when I got the results. I have cirrhosis. I am only 36 and have cirrhosis.
I have finally gotten my scripts for peginterferon and ribavirin. I will be on the maximum doses of both. I am scared and don't where my life is going right now. I am applying for pharmaceutical assistance because I have no money or insurance. I have been out of work for a year now and applying for SSDI. I think you have to be dead to get this. I want to go to work so bad but I get sick to often now to keep a job and it is not fair to my employer if I am sick all the time.
I am going to fight a good fight though and do all I can to fight this virus. I suffer bouts of depression though and hope it will not get me down when on tx. I will let all my friends know if my virus becomes undetectable. Until then I wish everyone luck that carries this dreadful disease. Take care Melinda
I have finally gotten my scripts for peginterferon and ribavirin. I will be on the maximum doses of both. I am scared and don't where my life is going right now. I am applying for pharmaceutical assistance because I have no money or insurance. I have been out of work for a year now and applying for SSDI. I think you have to be dead to get this. I want to go to work so bad but I get sick to often now to keep a job and it is not fair to my employer if I am sick all the time.
I am going to fight a good fight though and do all I can to fight this virus. I suffer bouts of depression though and hope it will not get me down when on tx. I will let all my friends know if my virus becomes undetectable. Until then I wish everyone luck that carries this dreadful disease. Take care Melinda
Dondondoodle's Hep C Story
I’d like to take this opportunity to introduce myself. My name is Don, aka Dondondoodle. I am 49 years old, a father of three wonderful sons. My boys are Steven (18), Jonathan (11), and Elijah (2). I am married to the most wonderful woman in the world, Latoia. We live in Suwanee GA, a small town just north of Atlanta. My wife, kids, and family mean everything in the world to me. We are a family of “love and happiness”. This is the theme of our house and the way that we try to live our day to day lives: with love and happiness.
One morning, three years ago, my family and I received some news that changed our world. My wife and I both had doctor appointments with different doctors. As I pulled into the parking lot for my appointment I received a phone call from my wife with wonderful news that we had a baby one the way. I cried with excitement as I sat in the parking lot. I pulled myself together and went in to see my doctor for a follow up appointment. I was called back to the exam room, where I sat for almost an hour. Finally the doctor came in, sat next to me and told me that she had received the blood test results and that she had bad news. She told me that I had Hepatitis C. I did not know what C was. I had heard of A and B, but not of C. I explained to the doctor that I had been in a major motorcycle accident back in 1981. I had received 27 blood transfusions throughout 15 major surgeries. She explained to me that hepatitis was a blood-to-blood transmitted virus and that the transfusions were more than likely the reason that I had contracted it. Over the next few minutes I was told that I would die from this disease. I left the office and started driving to work. Crying and wondering how I was going to tell my wife. I arrived at work and sat in the parking lot and cried and cried and cried. What had started off as one of the most wonderful days of my life dramatically turned into one of the worst. As I sat in the parking lot at my job I started getting mad. How could God do this to me? What was he, some kind of a jokester? I pulled myself together as much as I could and completed my days work.
Later that evening, as I tried to be happy about my wife’s news, I finally mustered up the strength to tell her about my disease. To my surprise, she seemed to handle it very well. She said that we needed to get a second opinion and to start doing some research. We got on the computer to find lots and lots of information. The next morning I made an appointment with a gastroenterologist. During that visit I learned that having this disease was not a death sentence and that treatments were available. Shame on my primary care doctor. I fired her later that day.
Over the next number of weeks, I had many tests done. Blood tests, an MRI, ultrasound, and a biopsy of my liver. I had learned that I was genotype 1a, that I had advance stages of cirrhosis of the liver, and that I had indications of having liver cancer. The worrying really kicked in. I had also learned that I would be doing treatments and that they were not going to be easy. They would last for 72 weeks instead of the standard 48 to increase my chances of staying clear. Even with that, the odds were not what I was hoping for.
When all of this originally started, I owned and operated two businesses. A furniture manufacturing facility and a furniture and art gallery. I employed 29 people. My doctor told me that stress was not good for me while on treatments. He gave me three months to delegate anything that caused stress before he would let me start treatments. I closed my businesses and started a job at The Home Depot. Although the hours were rough, the insurance had great coverage. As it came close to being time for me to start treatment I talked to the store management, to let them know what was going on and that I was concerned about my hours while on treatment. The store manager was very understanding and told me that The Home Depot had my back and would support me all the way.
I started treatment in September of 2007. I was on Pegasys (180 mg doses) and 1200 mg doses of Ribavirin. The first shot was rough. Within an hour, I had chills worse than I had ever had. Within 2 hours I started getting very sick at my stomach. I went to sleep until the next morning. From the next day on, it wasn’t so bad. I felt like I had a bad flu until the 5th week. After then it seemed to have settled down even more to where it was only giving me the flu-type symptoms for a few days after each shot.
On December 16th my third son, Elijah was born! I was in the room when he came out. I cut the cord. My wife had given birth to a healthy 6 lb, 13 oz beautiful boy.
By the end of the third month of treatment, I was called into the office at work. To my surprise, I was being fired. I had clocked in late for work 4 times that month. Even though I had been late lest than 15 minutes each time and it was on the days after my weekly shot, I had gone against the company policy. They seemed not to care at all and I was fired for the first time in my life. The reason given was ‘failure to follow company policy’. It was a week after my son was born and just a few days before Christmas.
I took the long drive home, dreading, again, breaking the bad news to my wife. Again to my surprise, she was more understanding than I would have ever imagined a wife could be. She told me not to worry, that we could make some changes in our lifestyle and everything would be ok. I was to become a stay at home dad and she would make the money. She really made me feel good by telling me that she thought it would be for the best and that it would save us money by not having to pay childcare and the boys would have more time to spend with their dad. Wow! What a woman. I have been truly blessed.
My wife shortly started back to work from maternity leave. Some days before she would leave for work, she would make a palette in the living room floor and my baby boy and I would spend the day together, lying together, watching “Yo Gabba Gabba”. What a cool show! Anytime I ever felt bad, I would look at my son and he would make me smile and make it all worth while. He seems to be a blessing, sent by God to get me through my sickness.
Over the next 13 months, I suffered from not only the regular side effects of the treatments but also the mild case of psoriasis covering over 90 percent of my body caused by the treatments. My dermatologist had put me on Enbrel and then Humara treatments as well to control the psoriasis. 4 times during my treatments I ended up in the emergency room with my blood levels so low that I had to be emitted to the hospital. Every time the hospital doctors would try to take me off of my hepatitis treatments. I refused. I was determined to make it to the end. On the 70th week I was suffering severely from side effect of not only the hepatitis treatments but the Humara treatments as well. My blood counts were lower than they had ever been. The Humira treatments had caused severe gastrointestinal problems and I was so sick that I could not even drink two sips of water to take my pills with out everything either coming up or running out. My hepatitis doctor at that point said that I had had enough. To stop taking the ribavirin and to stop the Humira shots and to just take my last two pegasys shots.
The virus had become non-detectable after week two of my treatments and I had stayed clear the whole time. I was excited that it was all over with and that I had made it. Within a week I started feeling better than I had remembered ever feeling in a long time. At week two I started not feeling so well. I was back at the doctor to check and see how my blood levels were doing. I mentioned that I was not feeling as well as I did the week before and I asked my doctor to please have my viral load checked while he was having other blood tests done.
Sure enough, the virus was back. I was so upset, mad, and worried. The madness and worrying consumed me. I had to have some relief from the worry. I could not shake it. I prayed for God to give me peace. One day it came to me that there was nothing else that I could do. I had done everything humanly possible. I decided at that point to turn it all over to God. I could not handle the worrying anymore. I prayed that God would take the worry away from me. During my prayers, I realized that God was going to be with me through whatever it was that he was going to do. I had always known that someday I would be going to heaven. I had given my heart to the lord many years before. I told the lord that I was ok with whatever he had in store. I had come to peace with it in my heart and I was free from the worry. I wish that I had done this from the start. It would have made things much easier.
In October, I had two heart attacks, a week apart from each other. I had two arteries that were severely blocked. I now have two stints behind my heart. I am eating healthier than I ever have. I stopped smoking after 37 years. I walked more than I ever have. I am thankful to have been left to live. It truly must not have been my time.
Today is January 23, 2010. I will be starting treatments again on the 27th. I am excited to finally be attempting this again. I will be doing Pegatron this time. I am convinced that it is going to work this time around. I am claiming this victory in the name of God before the battle even starts. I want to get on with my life and I hope to be able to return to work someday.
I find it very rewarding to be helping others with their journey with this terrible disease. I feel that I have much to offer. I have been very blessed with a loving, caring family and I hope that I can pass some of the love around.
We are here to love one another. So let’s do!
Dondondoodle
One morning, three years ago, my family and I received some news that changed our world. My wife and I both had doctor appointments with different doctors. As I pulled into the parking lot for my appointment I received a phone call from my wife with wonderful news that we had a baby one the way. I cried with excitement as I sat in the parking lot. I pulled myself together and went in to see my doctor for a follow up appointment. I was called back to the exam room, where I sat for almost an hour. Finally the doctor came in, sat next to me and told me that she had received the blood test results and that she had bad news. She told me that I had Hepatitis C. I did not know what C was. I had heard of A and B, but not of C. I explained to the doctor that I had been in a major motorcycle accident back in 1981. I had received 27 blood transfusions throughout 15 major surgeries. She explained to me that hepatitis was a blood-to-blood transmitted virus and that the transfusions were more than likely the reason that I had contracted it. Over the next few minutes I was told that I would die from this disease. I left the office and started driving to work. Crying and wondering how I was going to tell my wife. I arrived at work and sat in the parking lot and cried and cried and cried. What had started off as one of the most wonderful days of my life dramatically turned into one of the worst. As I sat in the parking lot at my job I started getting mad. How could God do this to me? What was he, some kind of a jokester? I pulled myself together as much as I could and completed my days work.
Later that evening, as I tried to be happy about my wife’s news, I finally mustered up the strength to tell her about my disease. To my surprise, she seemed to handle it very well. She said that we needed to get a second opinion and to start doing some research. We got on the computer to find lots and lots of information. The next morning I made an appointment with a gastroenterologist. During that visit I learned that having this disease was not a death sentence and that treatments were available. Shame on my primary care doctor. I fired her later that day.
Over the next number of weeks, I had many tests done. Blood tests, an MRI, ultrasound, and a biopsy of my liver. I had learned that I was genotype 1a, that I had advance stages of cirrhosis of the liver, and that I had indications of having liver cancer. The worrying really kicked in. I had also learned that I would be doing treatments and that they were not going to be easy. They would last for 72 weeks instead of the standard 48 to increase my chances of staying clear. Even with that, the odds were not what I was hoping for.
When all of this originally started, I owned and operated two businesses. A furniture manufacturing facility and a furniture and art gallery. I employed 29 people. My doctor told me that stress was not good for me while on treatments. He gave me three months to delegate anything that caused stress before he would let me start treatments. I closed my businesses and started a job at The Home Depot. Although the hours were rough, the insurance had great coverage. As it came close to being time for me to start treatment I talked to the store management, to let them know what was going on and that I was concerned about my hours while on treatment. The store manager was very understanding and told me that The Home Depot had my back and would support me all the way.
I started treatment in September of 2007. I was on Pegasys (180 mg doses) and 1200 mg doses of Ribavirin. The first shot was rough. Within an hour, I had chills worse than I had ever had. Within 2 hours I started getting very sick at my stomach. I went to sleep until the next morning. From the next day on, it wasn’t so bad. I felt like I had a bad flu until the 5th week. After then it seemed to have settled down even more to where it was only giving me the flu-type symptoms for a few days after each shot.
On December 16th my third son, Elijah was born! I was in the room when he came out. I cut the cord. My wife had given birth to a healthy 6 lb, 13 oz beautiful boy.
By the end of the third month of treatment, I was called into the office at work. To my surprise, I was being fired. I had clocked in late for work 4 times that month. Even though I had been late lest than 15 minutes each time and it was on the days after my weekly shot, I had gone against the company policy. They seemed not to care at all and I was fired for the first time in my life. The reason given was ‘failure to follow company policy’. It was a week after my son was born and just a few days before Christmas.
I took the long drive home, dreading, again, breaking the bad news to my wife. Again to my surprise, she was more understanding than I would have ever imagined a wife could be. She told me not to worry, that we could make some changes in our lifestyle and everything would be ok. I was to become a stay at home dad and she would make the money. She really made me feel good by telling me that she thought it would be for the best and that it would save us money by not having to pay childcare and the boys would have more time to spend with their dad. Wow! What a woman. I have been truly blessed.
My wife shortly started back to work from maternity leave. Some days before she would leave for work, she would make a palette in the living room floor and my baby boy and I would spend the day together, lying together, watching “Yo Gabba Gabba”. What a cool show! Anytime I ever felt bad, I would look at my son and he would make me smile and make it all worth while. He seems to be a blessing, sent by God to get me through my sickness.
Over the next 13 months, I suffered from not only the regular side effects of the treatments but also the mild case of psoriasis covering over 90 percent of my body caused by the treatments. My dermatologist had put me on Enbrel and then Humara treatments as well to control the psoriasis. 4 times during my treatments I ended up in the emergency room with my blood levels so low that I had to be emitted to the hospital. Every time the hospital doctors would try to take me off of my hepatitis treatments. I refused. I was determined to make it to the end. On the 70th week I was suffering severely from side effect of not only the hepatitis treatments but the Humara treatments as well. My blood counts were lower than they had ever been. The Humira treatments had caused severe gastrointestinal problems and I was so sick that I could not even drink two sips of water to take my pills with out everything either coming up or running out. My hepatitis doctor at that point said that I had had enough. To stop taking the ribavirin and to stop the Humira shots and to just take my last two pegasys shots.
The virus had become non-detectable after week two of my treatments and I had stayed clear the whole time. I was excited that it was all over with and that I had made it. Within a week I started feeling better than I had remembered ever feeling in a long time. At week two I started not feeling so well. I was back at the doctor to check and see how my blood levels were doing. I mentioned that I was not feeling as well as I did the week before and I asked my doctor to please have my viral load checked while he was having other blood tests done.
Sure enough, the virus was back. I was so upset, mad, and worried. The madness and worrying consumed me. I had to have some relief from the worry. I could not shake it. I prayed for God to give me peace. One day it came to me that there was nothing else that I could do. I had done everything humanly possible. I decided at that point to turn it all over to God. I could not handle the worrying anymore. I prayed that God would take the worry away from me. During my prayers, I realized that God was going to be with me through whatever it was that he was going to do. I had always known that someday I would be going to heaven. I had given my heart to the lord many years before. I told the lord that I was ok with whatever he had in store. I had come to peace with it in my heart and I was free from the worry. I wish that I had done this from the start. It would have made things much easier.
In October, I had two heart attacks, a week apart from each other. I had two arteries that were severely blocked. I now have two stints behind my heart. I am eating healthier than I ever have. I stopped smoking after 37 years. I walked more than I ever have. I am thankful to have been left to live. It truly must not have been my time.
Today is January 23, 2010. I will be starting treatments again on the 27th. I am excited to finally be attempting this again. I will be doing Pegatron this time. I am convinced that it is going to work this time around. I am claiming this victory in the name of God before the battle even starts. I want to get on with my life and I hope to be able to return to work someday.
I find it very rewarding to be helping others with their journey with this terrible disease. I feel that I have much to offer. I have been very blessed with a loving, caring family and I hope that I can pass some of the love around.
We are here to love one another. So let’s do!
Dondondoodle
Monday, April 5, 2010
Get Tested - Brooklyn Eagle Article
Everyone Should Be Tested for ‘Hidden Disease’ of Hepatitis C
by Brooklyn Eagle (edit@brooklyneagle.net), published online 09-23-2009
By Betty Vega
There are an estimated 200 million people worldwide infected with HCV — ”making it one of the greatest public health threats faced in this century, and perhaps one of the greatest threats to be faced in the next century. Approximately five million people across the country are infected with Hepatitis C. It is five times more prevalent than AIDS and approximately 10,000 people die annually as a result of HCV. 65% of those infected with Hepatitis C are between 30 and 49 years old.
Hepatitis C is often called a “hidden disease” or “silent epidemic” because those infected with HCV are often unaware for 10-30 years after exposure. The symptoms of HCV are easy to misdiagnose and often resemble the flu or a variety of other conditions. When symptoms are present they can include extreme fatigue, nausea, liver pain, and depression.
Hepatitis C is a blood-borne virus that predominantly infects the cells of the liver. This causes inflammation of and sometimes significant damage to the liver, thus affecting its ability to perform essential functions. There are several ways one can contract the virus. Having had a blood transfusion prior to 1992, being born to a mother with hepatitis C or needing a C-section; having sex with an infected person (if blood is present); being tattooed or pierced with unspecialized tools that were used on an infected person; getting stuck accidentally with a needle used on an infected person; sharing an infected person’s razor, hairbrush, comb or toothbrush; sharing drug needles with an infected person and manicures or pedicures.
This is where the need for education and awareness arises. Through standard blood workup procedures, hepatitis C will not show up. Unfortunately even with elevated liver enzymes, doctors don’t equate that with hepatitis C. For the most part, physicians don’t know nearly enough about the virus. People should see a gastroenterologist or better yet, a hepatologist, who will have more knowledge about diagnosis for hepatitis C. The only way to determine if you have this virus is by having a hepatitis C test, exclusively.
Without treatment, approximately 20% of those untreated will develop cirrhosis, (fibrosis occurs when extensive scar tissue develops), liver cancer, or will need liver transplantation (when liver no longer can function) or face death.
I went through years of annual blood workups displaying elevated liver enzymes and was told it meant nothing. Could be from taking other meds or being overweight; never going forward with any other testing. I met a new primary care physician in 2002 who, after seeing my blood results, told me to get this other test I had never heard about. So I went to the lab, got tested for hepatitis C and got the phone call at work. I was positive.
My reactions were mixed; mostly shock. I did, however, follow her directions and saw a hepatologist who treated me for a year and a half. The news was wonderful. I had cleared this virus. It was four years September 13th. I’m one of the lucky ones. This year I lost a couple of friends who were never treated for the virus. They became quite ill and eventually their livers gave out. It doesn’t have to be that way. I’ll never know how I got it or exactly how long ago. At this point it doesn’t matter. Getting tested is the only thing that matters. It’s life or death.
Betty Vega, a hepatitis C survivor, is support group facilitator for the disease at Long Island College Hospital. She can be reached at BettyV444@aol.com for more information.
by Brooklyn Eagle (edit@brooklyneagle.net), published online 09-23-2009
By Betty Vega
There are an estimated 200 million people worldwide infected with HCV — ”making it one of the greatest public health threats faced in this century, and perhaps one of the greatest threats to be faced in the next century. Approximately five million people across the country are infected with Hepatitis C. It is five times more prevalent than AIDS and approximately 10,000 people die annually as a result of HCV. 65% of those infected with Hepatitis C are between 30 and 49 years old.
Hepatitis C is often called a “hidden disease” or “silent epidemic” because those infected with HCV are often unaware for 10-30 years after exposure. The symptoms of HCV are easy to misdiagnose and often resemble the flu or a variety of other conditions. When symptoms are present they can include extreme fatigue, nausea, liver pain, and depression.
Hepatitis C is a blood-borne virus that predominantly infects the cells of the liver. This causes inflammation of and sometimes significant damage to the liver, thus affecting its ability to perform essential functions. There are several ways one can contract the virus. Having had a blood transfusion prior to 1992, being born to a mother with hepatitis C or needing a C-section; having sex with an infected person (if blood is present); being tattooed or pierced with unspecialized tools that were used on an infected person; getting stuck accidentally with a needle used on an infected person; sharing an infected person’s razor, hairbrush, comb or toothbrush; sharing drug needles with an infected person and manicures or pedicures.
This is where the need for education and awareness arises. Through standard blood workup procedures, hepatitis C will not show up. Unfortunately even with elevated liver enzymes, doctors don’t equate that with hepatitis C. For the most part, physicians don’t know nearly enough about the virus. People should see a gastroenterologist or better yet, a hepatologist, who will have more knowledge about diagnosis for hepatitis C. The only way to determine if you have this virus is by having a hepatitis C test, exclusively.
Without treatment, approximately 20% of those untreated will develop cirrhosis, (fibrosis occurs when extensive scar tissue develops), liver cancer, or will need liver transplantation (when liver no longer can function) or face death.
I went through years of annual blood workups displaying elevated liver enzymes and was told it meant nothing. Could be from taking other meds or being overweight; never going forward with any other testing. I met a new primary care physician in 2002 who, after seeing my blood results, told me to get this other test I had never heard about. So I went to the lab, got tested for hepatitis C and got the phone call at work. I was positive.
My reactions were mixed; mostly shock. I did, however, follow her directions and saw a hepatologist who treated me for a year and a half. The news was wonderful. I had cleared this virus. It was four years September 13th. I’m one of the lucky ones. This year I lost a couple of friends who were never treated for the virus. They became quite ill and eventually their livers gave out. It doesn’t have to be that way. I’ll never know how I got it or exactly how long ago. At this point it doesn’t matter. Getting tested is the only thing that matters. It’s life or death.
Betty Vega, a hepatitis C survivor, is support group facilitator for the disease at Long Island College Hospital. She can be reached at BettyV444@aol.com for more information.
City Limits Article - Nekoro Gomes
When Betty Vega first learned that she had Hepatitis C eight years ago, she remembers being stunned. Vega, 58, had been aware of having elevated liver enzymes in her blood, but doctors had assured her they came from benign sources. After all, says Vega – a music promoter in Park Slope – there was no apparent cause, with more than 20 years past since any college-era sampling of drugs, a primary risk factor that doctors often say necessitate a test for the disease.~
Upon learning of her positive diagnosis after a perceptive doctor suggested she get additional testing, Vega was fearful and confused. “From what I had read [about hepatitis C], I was convinced I was going to die. I thought it was something that had to be much worse than HIV," she recalls. In fact, a subsequent liver function test would show that Vega was in the second stage of hepatitis C infection, a point at which the liver has become inflamed and mild scarring, or fibrosis, had begun to form.
Vega began to educate herself and after finding a doctor who specializes in hepatitis C treatment, she was able to clear the virus from her body in 2007, six years after first being diagnosed. That positive outcome is "on the rarer side," she says. According to the Centers for Disease Control, up to 70 percent of people with the virus will contract chronic liver disease, and up to 20 percent will develop cirrhosis.
Today Vega considers herself lucky that the disease was caught at a treatable stage, but her work as a patient advocate and support group facilitator for chronic hepatitis C victims has prompted her to get involved in both the politics and policy surrounding the disease. And, even as she’s getting a new support group going at Long Island College Hospital in downtown Brooklyn, she believes not nearly enough is being done to educate people about the disease. Vega does not appear to be alone in that – this past July, the state’s health department announced the launch of a $270,000 public awareness campaign that will use billboards, subway and bus shelter advertisements to promote early testing and treatment for the disease. “Over 200,000 New Yorkers have hepatitis C. Are you one of them?” the campaign asks.
The campaign is a continuation of an earlier educational effort for viral hepatitis diseases that was first started in 2004 after many health care providers and hepatitis C advocacy groups called for the addition of a toll-free hotline in both Spanish and English. So far, more than 400 people have called in from throughout the state to get basic information on the disease since the campaign was re-launched in mid-July.
Under the radar
A health bulletin from the Department of Health and Mental Hygiene (DOHMH) released several years ago says that 200,000 to 300,000 New York City residents are infected with the virus and most are currently unaware of their status. The most conservative estimate labels 2.2 percent of the city's [non-homeless, outside-prison] adults infected, higher than the nationwide average of 1.8 percent.
Yet, some advocates say, the amount of funding currently available for hepatitis C education and awareness is not nearly proportional to the number of people at risk of contracting the disease.
Part of the reason that advocates for hepatitis C say education about the disease is needed is because of hepatitis C’s elusive nature. Unlike other viral hepatitis strains, there is no vaccine against the disease and it has to be tested for specifically: victims often exhibit no visible symptoms for decades after infection. As a result, there is no way to tell exactly when a person may have become infected or even pinpoint the exact number of infections that exist throughout the city.
And although the sharing of needles with an infected person, most often through intravenous drug use, is thought to be the most common way the disease is contracted in New York City, someone can become infected in any circumstance where they come in contact with an infected person’s blood. In fact, among the many task force committees that provide resources for sufferers is one that targets how to control infection among the city’s many tattoo and piercing parlors, nail salons and barber shops as well.
According to the latest data on newly reported people in New York City living with chronic hepatitis C, the most common age for new diagnoses is between 50 and 59, which adds another challenge to the city’s effort to get people to properly screen themselves for the disease.
“A lot of people who may have done drugs [in the past] have stopped,” says Eric Rude, director of the Office of Viral Hepatitis Coordination at DOHMH. “So they’re probably not going to be perceived to be at-risk...a general [education] campaign would be appropriate.”
Rude says a significant portion of the money the department receives through the state's health budget goes towards public awareness efforts around the need for early screening, in addition to helping to fund several comprehensive hepatitis C treatment centers throughout the city.
In order to reach populations most at risk for contracting and spreading the disease, DOHMH has worked to better coordinate testing and treatment resources through its support of several interconnected task forces made up of providers, local health clinics and support groups that meet several times a year. Rude adds that free testing for hepatitis C is done in many of the city’s STD clinics, as well as through community-based organizations that are part of the city’s task forces.
Although the $1.19 million in state funding that went towards hepatitis C programs in New York State for the 2009-10 fiscal year is a reduction from the $1.58 million allocated the year before, Shari Newman-Foster of the statewide hepatitis C advocacy group, Status C Unknown, says the inclusion of funding is still a hard-won gain for hepatitis C advocates in the state.
“Governor Paterson cut funding for all new programs by 50 percent,” explains Newman-Foster. “But [the state] kept the line item for hepatitis C [programs].” That’s one of several signs she sees of the state taking more action around the disease.
Grassroots efforts
Mireya Delgado, a senior patient care manager with the Latino Organization for Liver Awareness (LOLA), a Bronx-based nonprofit that works primarily with Spanish-speaking clients dealing with chronic hepatitis C, also points to the toll-free hotline in both Spanish and English as an improvement in the state’s efforts.
Delgado says that prior to her nonprofit’s founding in 1994, there was little information on severe liver disease and the effects of chronic hepatitis C in Spanish. The organization also operates its own bilingual hotline.
When City Council restored $480,000 to a hepatitis C public education campaign, it noted that of the 200,000 to 300,000 New York residents estimated to be infected with hepatitis C, approximately 40 percent are Latino.
Through the grant from the city council, along with matching funds from the state, LOLA was able to use $750,000 in funding for hepatitis C education for fiscal years 2006-2008.
“Media is very costly,” explains Delgado. “We do a lot of community outreach, presentations at rehab centers, clinics, comprehensive medical centers and health fairs. With the grant we were able to conduct trainings and at one point we were able to train more than 200 trainers who were in turn able to go back to their agencies.”
But while Delgado acknowledges that the type of support needed to do community education for hepatitis C programs can be expensive, she says it pales in comparison to the cost of doing nothing for the largely Latino population she works with, which she says is often unable to access health insurance due to their immigration status.
“We’re seeing cases that are often diagnosed too late and they’re not a candidate for treatment ... much more awareness is needed [for people] who are still not aware and who are walking around with it.”
Upon learning of her positive diagnosis after a perceptive doctor suggested she get additional testing, Vega was fearful and confused. “From what I had read [about hepatitis C], I was convinced I was going to die. I thought it was something that had to be much worse than HIV," she recalls. In fact, a subsequent liver function test would show that Vega was in the second stage of hepatitis C infection, a point at which the liver has become inflamed and mild scarring, or fibrosis, had begun to form.
Vega began to educate herself and after finding a doctor who specializes in hepatitis C treatment, she was able to clear the virus from her body in 2007, six years after first being diagnosed. That positive outcome is "on the rarer side," she says. According to the Centers for Disease Control, up to 70 percent of people with the virus will contract chronic liver disease, and up to 20 percent will develop cirrhosis.
Today Vega considers herself lucky that the disease was caught at a treatable stage, but her work as a patient advocate and support group facilitator for chronic hepatitis C victims has prompted her to get involved in both the politics and policy surrounding the disease. And, even as she’s getting a new support group going at Long Island College Hospital in downtown Brooklyn, she believes not nearly enough is being done to educate people about the disease. Vega does not appear to be alone in that – this past July, the state’s health department announced the launch of a $270,000 public awareness campaign that will use billboards, subway and bus shelter advertisements to promote early testing and treatment for the disease. “Over 200,000 New Yorkers have hepatitis C. Are you one of them?” the campaign asks.
The campaign is a continuation of an earlier educational effort for viral hepatitis diseases that was first started in 2004 after many health care providers and hepatitis C advocacy groups called for the addition of a toll-free hotline in both Spanish and English. So far, more than 400 people have called in from throughout the state to get basic information on the disease since the campaign was re-launched in mid-July.
Under the radar
A health bulletin from the Department of Health and Mental Hygiene (DOHMH) released several years ago says that 200,000 to 300,000 New York City residents are infected with the virus and most are currently unaware of their status. The most conservative estimate labels 2.2 percent of the city's [non-homeless, outside-prison] adults infected, higher than the nationwide average of 1.8 percent.
Yet, some advocates say, the amount of funding currently available for hepatitis C education and awareness is not nearly proportional to the number of people at risk of contracting the disease.
Part of the reason that advocates for hepatitis C say education about the disease is needed is because of hepatitis C’s elusive nature. Unlike other viral hepatitis strains, there is no vaccine against the disease and it has to be tested for specifically: victims often exhibit no visible symptoms for decades after infection. As a result, there is no way to tell exactly when a person may have become infected or even pinpoint the exact number of infections that exist throughout the city.
And although the sharing of needles with an infected person, most often through intravenous drug use, is thought to be the most common way the disease is contracted in New York City, someone can become infected in any circumstance where they come in contact with an infected person’s blood. In fact, among the many task force committees that provide resources for sufferers is one that targets how to control infection among the city’s many tattoo and piercing parlors, nail salons and barber shops as well.
According to the latest data on newly reported people in New York City living with chronic hepatitis C, the most common age for new diagnoses is between 50 and 59, which adds another challenge to the city’s effort to get people to properly screen themselves for the disease.
“A lot of people who may have done drugs [in the past] have stopped,” says Eric Rude, director of the Office of Viral Hepatitis Coordination at DOHMH. “So they’re probably not going to be perceived to be at-risk...a general [education] campaign would be appropriate.”
Rude says a significant portion of the money the department receives through the state's health budget goes towards public awareness efforts around the need for early screening, in addition to helping to fund several comprehensive hepatitis C treatment centers throughout the city.
In order to reach populations most at risk for contracting and spreading the disease, DOHMH has worked to better coordinate testing and treatment resources through its support of several interconnected task forces made up of providers, local health clinics and support groups that meet several times a year. Rude adds that free testing for hepatitis C is done in many of the city’s STD clinics, as well as through community-based organizations that are part of the city’s task forces.
Although the $1.19 million in state funding that went towards hepatitis C programs in New York State for the 2009-10 fiscal year is a reduction from the $1.58 million allocated the year before, Shari Newman-Foster of the statewide hepatitis C advocacy group, Status C Unknown, says the inclusion of funding is still a hard-won gain for hepatitis C advocates in the state.
“Governor Paterson cut funding for all new programs by 50 percent,” explains Newman-Foster. “But [the state] kept the line item for hepatitis C [programs].” That’s one of several signs she sees of the state taking more action around the disease.
Grassroots efforts
Mireya Delgado, a senior patient care manager with the Latino Organization for Liver Awareness (LOLA), a Bronx-based nonprofit that works primarily with Spanish-speaking clients dealing with chronic hepatitis C, also points to the toll-free hotline in both Spanish and English as an improvement in the state’s efforts.
Delgado says that prior to her nonprofit’s founding in 1994, there was little information on severe liver disease and the effects of chronic hepatitis C in Spanish. The organization also operates its own bilingual hotline.
When City Council restored $480,000 to a hepatitis C public education campaign, it noted that of the 200,000 to 300,000 New York residents estimated to be infected with hepatitis C, approximately 40 percent are Latino.
Through the grant from the city council, along with matching funds from the state, LOLA was able to use $750,000 in funding for hepatitis C education for fiscal years 2006-2008.
“Media is very costly,” explains Delgado. “We do a lot of community outreach, presentations at rehab centers, clinics, comprehensive medical centers and health fairs. With the grant we were able to conduct trainings and at one point we were able to train more than 200 trainers who were in turn able to go back to their agencies.”
But while Delgado acknowledges that the type of support needed to do community education for hepatitis C programs can be expensive, she says it pales in comparison to the cost of doing nothing for the largely Latino population she works with, which she says is often unable to access health insurance due to their immigration status.
“We’re seeing cases that are often diagnosed too late and they’re not a candidate for treatment ... much more awareness is needed [for people] who are still not aware and who are walking around with it.”
Wishing the best of luck to all! Kathleen
I am a 60 year old woman who often imagines that she is much younger; it might be a case of arrested development? - For a few years I knew I should get tested for Hep C because I had a history of some risky behaviors in the distant past and had also been exposed to a lot of blood in my work as a health care provider. I had quite a few friends and family members who had been diagnosed and gone thru treatment, including my little brother, my best friend and several former boyfriends. But I put it off, didn’t think about it too much, and was feeling pretty well most of the time. Sometimes in the 1970’s I felt pretty strange and wondered if my childhood malaria had come back. I did have mild to moderate fibromyalgia for about 20 years until the mid-90’s, and then it went away.
My brother died in 2004 at the age of 51 of liver cirrhosis. I was very mad at him for a long time, I didn’t understand at that time about brain damage perhaps making it impossible for him to stop drinking, and the ammonia in his blood affecting his mind. It was like he got taken over by an evil alien. He kept drinking during his Hep C treatment, which is probably a lot worse than doing no treatment at all. I was the only one with him when he died, he never thought he was going to die, he thought he would get a liver transplant. I spent 2 weeks cleaning out his house – Yikes! - I have one of his cats now; I brought her home on the plane.
I got tested in 2005 and wasn’t surprised to be positive for Hep C. Genotype 2b, the same as my best friend. Found a good hepatologist, had a biopsy which showed no liver damage, mild inflammation. Normal LFT’s when tested. So I haven’t done treatment and may not ever. I do have some RUQ pain which I wonder about, some blood sugar issues, and some eye issues. Every time something new develops you wonder if it is associated with the virus.
From my teens to mid-20’s I did some serious sporadic binge-drinking and pot smoking, but after that I was always on call for work and starting a family so I quit, I had to have all my remaining wits about me! I was always into good healthy food and outdoors exercise, and lucky that I never liked cigarette smoking.
In 2008 I attended a workshop put on by the Hepatitis C Support Project and became a Hep C Educator. So far I have been active on some websites and have written a couple of articles for magazines and newsletters, hoping to raise hepatitis awareness in health providers. I have some other ideas about things that I might do in the future.
I haven’t told very many people that I have Hep C. I don’t want my children to worry about me; I don’t seem to be very sick at present. I’m a pretty private person and a bit of a loner, I don’t like people talking about me or feeling sorry for me. So I’ve just told a few people, mostly those who also have it. Maybe this will change in the future?
Our American health care system is frustrating, inefficient and expensive. I’ve been self-paying most of my life and it’s difficult to find out how much things are going to cost. Often it turns out to be much higher than the quoted price. Many people have limited access to care due to lack of money and insurance. I believe that providing basic health care should not be a source of high profits and great wealth, this seems wrong to me. I feel we need to take it out of the hands of the for-profit insurance companies. Emphasize prevention and healthy behaviors. Informed choice in health care is an important principle. It’s a shame that it has become such a partisan issue at present. We all need to do our part; we are all our own primary health care providers because of all the life-style choices we make every day.
My brother died in 2004 at the age of 51 of liver cirrhosis. I was very mad at him for a long time, I didn’t understand at that time about brain damage perhaps making it impossible for him to stop drinking, and the ammonia in his blood affecting his mind. It was like he got taken over by an evil alien. He kept drinking during his Hep C treatment, which is probably a lot worse than doing no treatment at all. I was the only one with him when he died, he never thought he was going to die, he thought he would get a liver transplant. I spent 2 weeks cleaning out his house – Yikes! - I have one of his cats now; I brought her home on the plane.
I got tested in 2005 and wasn’t surprised to be positive for Hep C. Genotype 2b, the same as my best friend. Found a good hepatologist, had a biopsy which showed no liver damage, mild inflammation. Normal LFT’s when tested. So I haven’t done treatment and may not ever. I do have some RUQ pain which I wonder about, some blood sugar issues, and some eye issues. Every time something new develops you wonder if it is associated with the virus.
From my teens to mid-20’s I did some serious sporadic binge-drinking and pot smoking, but after that I was always on call for work and starting a family so I quit, I had to have all my remaining wits about me! I was always into good healthy food and outdoors exercise, and lucky that I never liked cigarette smoking.
In 2008 I attended a workshop put on by the Hepatitis C Support Project and became a Hep C Educator. So far I have been active on some websites and have written a couple of articles for magazines and newsletters, hoping to raise hepatitis awareness in health providers. I have some other ideas about things that I might do in the future.
I haven’t told very many people that I have Hep C. I don’t want my children to worry about me; I don’t seem to be very sick at present. I’m a pretty private person and a bit of a loner, I don’t like people talking about me or feeling sorry for me. So I’ve just told a few people, mostly those who also have it. Maybe this will change in the future?
Our American health care system is frustrating, inefficient and expensive. I’ve been self-paying most of my life and it’s difficult to find out how much things are going to cost. Often it turns out to be much higher than the quoted price. Many people have limited access to care due to lack of money and insurance. I believe that providing basic health care should not be a source of high profits and great wealth, this seems wrong to me. I feel we need to take it out of the hands of the for-profit insurance companies. Emphasize prevention and healthy behaviors. Informed choice in health care is an important principle. It’s a shame that it has become such a partisan issue at present. We all need to do our part; we are all our own primary health care providers because of all the life-style choices we make every day.
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