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
Tuesday, April 6, 2010
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.
Sunday, April 4, 2010
Lilian's Story
I should call my story the needler who was needled. My name is Lilian and I am 52. It seems like all my life has been connected to needles one way or another. I have been trained as an electrologist 32 years ago and had my own business working at and operating a busy day spa. During my years in business I also have performed skin care, permanent makeup, piercing, tattooing and even a process called acne scar needling. I remember that we did not wear gloves or used disposables until the early 80's. Sterilization procedures were debated and approved as industry standards around this time. I can honestly say I have been extremely vigilant about cleanliness for my establishment and being an example as I also operated a school over the years.
Starting in the 80's I also became an avid fan of accupuncture and faithfully visited my dentist at least 5-6 times a year for extensive procedures.
5 years ago as part of my license renewal application I had the 3 part hepatitis vaccine - which I think was a coincidental good idea.
2 years ago after a Red Cross blood donation I was notified that I had hep c. My viral count came in at 15 mill. and now has climbed to 20 mill. Fortunately liver test, ultra sound and fibroscan are normal and I am being treated in my home country out of the USA where I have free health care.
I would like to call the attention of all the cosmetic industry and body modification workers to get tested - even if it is through blood donation. Obviously - in my case it would be a miracle not to have the virus with my exposure rate and years around needles.
Right now the hope is the new medicine coming out in 2011, keeping my lifestyle and liver healthy. Also never to be afraid of this virus that is now part of my body. I believe that all experiences in life happen for a reason. Remaining positive is the greatest gift we can give ourselves.
Starting in the 80's I also became an avid fan of accupuncture and faithfully visited my dentist at least 5-6 times a year for extensive procedures.
5 years ago as part of my license renewal application I had the 3 part hepatitis vaccine - which I think was a coincidental good idea.
2 years ago after a Red Cross blood donation I was notified that I had hep c. My viral count came in at 15 mill. and now has climbed to 20 mill. Fortunately liver test, ultra sound and fibroscan are normal and I am being treated in my home country out of the USA where I have free health care.
I would like to call the attention of all the cosmetic industry and body modification workers to get tested - even if it is through blood donation. Obviously - in my case it would be a miracle not to have the virus with my exposure rate and years around needles.
Right now the hope is the new medicine coming out in 2011, keeping my lifestyle and liver healthy. Also never to be afraid of this virus that is now part of my body. I believe that all experiences in life happen for a reason. Remaining positive is the greatest gift we can give ourselves.
Laurie's Amazing Story of Faith
I was born in September of 1966. I was always feeling unloved except when my mom was around. I knew she loved me; she showed me. My mom is a very loving and caring person. My dad was a truck driver My parents split and divorced when I was 8. My mom raised all three of us by herself; three children and no help. I don't know how she did it but I know the lord helped her through.
I grew up with my older sister Robin, 1959, and a brother Kenny, 1960 and at 15 my sister found out she had Multiple Sclerosis. But my mom believes she may have had it much younger because she fell around more than other kids her age; one time, I will never forget, she got hit by a car.
I always grew up feeling out of place because of being overweight and so in school I read the how to get popular books and they worked. The secret is if someone that doesn't like you or has ever expressed not liking you or try to get to know you then when you see them just say "Hi" you make the first try. That's the secret and I took it one day at a time.
My brother is now married and has a son. Robin has been in a nursing home since 1995 due to her progression of the MS. I on the other hand never knew or expected what was ahead for me. One night changed my life forever.
December, 1988 the Friday night after Christmas because I was excited about going out with my friends to "Tully's" the local Bar & Grill. I put on the beautiful Gold satin blouse along with my black pants my mom gave me for Christmas. I was sitting at a booth window which faced the parking lot of the restaurant and heard noises outside so I looked and there were 2 men beating terribly on another man all alone and others were standing there doing nothing. My friend Toni, (she's a longtime school friend) and I went outside to try to help in some way and as we went out the door I remember telling the door man what we saw.. We went outside and yelled as we walked closer (nothing stops me when someone is in need of help). As we got closer we told the guys to stop and that the police were on their way and 2 went one way the other guy in the opposite direction. Toni and I started to walk away. Not even 5 feet away we heard them running back toward the one guy and BAM!! Down he went on the ground. The police started coming into the parking lot and no one had seen if this guy was ok. So I went towards the guy to ask if he were ok and he said "Please help me" and what you do but help. I reached down and pulled him up between the two cars and without realizing there was ALOT of blood, you couldn't see because it was dark. In the 80's AIDS was just being brought out and so I freaked. My hands were covered in blood. I immediately went to the doorman to let me in to wash my hands and he told me last call no one can enter and I even showed him my hands. Well I took a second to figure what in the world am I going to do so I looked around and there was snow on the ground in small piles so I stuck my hands in the snow in and out in and out until I couldn't really see any blood.
I got home and washed, scrubbed did what ever I had to do. I noticed my hands were stained kind of red. I checked for cuts and there was a small cut on my right thumb that hadn't quite healed yet. I forgot all about it the next day and went day to day about my business.
Then came February 1989, my complete physical....Blood work and lots of it. Then results showed non-A non-B hepatitis, so the testing kept going about once a month to monitor.
* 1990 - First round of treatment* 1993 - September 18, I got married then one week later ended up in the hospital for a severe pelvic infection then two weeks later went back for surgery due to ovarian cysts. While under they found signs of cirrhosis
* 1999 - 2nd round of treatment
* 2001 - Rotator Cuff surgery and tested my liver, and the cirrhosis still the same* 2004 - Blood work is abnormal and now my cirrhosis has changed to stage 2, there was discussion of a liver transplant but we'll wait right now because my numbers aren't where they need to be, also I found out I am Geno type 1-A Chronic Active
* October 2004 - Filed for my Disability per doctor's orders
* November 2005 - Started treatment for 3rd time, very different this time and much sicker than in past. Symptoms were very sick. The medicine ate the lining of my stomach and hurt so bad and was very uncomfortable so the acid reflux had gotten worse also. I had many headaches much worse than the daily to every other day headaches I was used to still bothered me.
* March 2006 - Blood Work showed change in levels of Viral Load went to -50 which indicates no signs of Hepatitis C, BUT don't get excited yet that's why Hepatitis C carries the sign of the dragon, because there is NO CURE and NO VACCINE it hides for a while then attacks again.
* November 2006 - Ended treatments due to doctors orders and showing no signs right now
As of today I have the following: Please for more information I have linked most of my symptoms.
• Stage 2 Fibrosis
• Enlarged Spleen - due to liver not functioning at 100%
• Thyroid problems - under active
• More fatigue, very very tired!
• Spasms Cramping all over
• Hurt all over in different Ares from side to back to legs
• Joints hurt
• Swelling
• Dry Mouth
• Noise Bleeds
• Trouble Concentrating
• Trouble Remembering
• Itchy skins area's - right wrist area, occasionally under both breasts (sorry)
I am currently fighting for my Disability but my age they say is hindering the process, but my Faith over-rides that theory. The list goes on but I will up date as each day goes.
Please continue to pray for me and my husband Rich for finances, physical, spiritual guidance, encourage us and comfort us with prayers for peace. I know the lord will take care of us but with Rich the ONLY income it is getting more and more harder to keep going. But I am NOT giving up Hope or Courage!
God Bless You, Laurie
Doctor Rudman is going over my lab work because it was my 3 month check up since January.
Well your viral load is up and the virus is back up to 2,200,000. (My heart sank), then he said we need to do another biopsy since my last one was in 1999 when I had rotator cuff surgery and they took a biopsy then. This will show how far the cirrhosis has spread.
After Biopsy I have to stay at least 8 hours to be sure of no complications. The doctors were telling me there is a new medicine out that's a shot per day along with pills again. But, they say I shouldn't get as sick as the last time. ugh.
Please keep me in pray for Finances and Health
Liver Biopsy Day 8:30am checked in short wait then sent back to Same Day Surgery the normal Blood pressure, temperature etc...Go over procedure with OR Nurse 10:40 taken to Radiology and no time to wait then in to a room There were 3 Nurses, the sonogram Tech, one doctor and a doctor in training, and one nurse to keep me calm I am very nervous at this point with all of these people in the room but for Stat procedures you have too in case of complications. The Doctor told me when to breath, hold it and not move. If one move it could slice the liver and I am not going there.
Ok now it's time, he uses the sonogram to locate the liver, then finds his spot (mind you in 1989 my first biopsy wasn't so easy and pain free I had one nurse and one doctor and no sono machine, just imagine, ewwww) He says you will feel a bee sting and then yet another, in he went, then he says Laurie I am sorry but I need to go in again; I didn't get enough, (Did not want to hear that) so in he went and it was over.
Went back to my room now lying only on my right side facing the next 6 hours in that position. (Bleeding from the biopsy can help clot the area so no internal bleeding later.) I got one shot of Morphine and I tried to sleep but it didn't help, 2 hours later my mom and Aunt came back and they were glad to see no complications. My best friend and her mom came back to pray and talk to me before heading back 2 hours away. So after 3 hours another shot of morphine, you will feel a little sleepy, wow I feel it now ready to sleep for years. So off to la la land I went I was discharged at 6:30pm
Now the next week would be the hardest, moving and waiting on results.
Dr Rudman and another doctor were explaining bits and pieces to me but could only grab what I could understand. My Liver is now stage 4 cirrhosis and I NOW have what’s called Fatty Liver Disease (NASH). This now grows concern for my doctors because he explained to me that the two Hepatitis C and Fatty Liver Disease (NASH) are FATAL together.
So now a new Disease to fight against.
My doctors are saying we have to put the Hepatitis C to the side and get to the Fatty Liver right away. Because Cryptogenic cirrhosis is a common cause of liver-related morbidity and mortality in the United States. Nonalcoholic fatty liver disease (NAFLD) is now recognized as the most common cause of cryptogenic cirrhosis. However, the diagnosis of cirrhosis in patients with NAFLD appears to be delayed compared with those with other chronic liver diseases and thus carries a higher mortality rate.
Please keep me in prayer!
Today I got the call from Dr O'Conner about my PET Scan results. hummmmm
Well, now I have swollen lymph nodes located in the chest and the spleen looks suspicious (what does that mean?) I had to set up another CAT Scan and a visit with a Lung specialist. Not sure why on that one this was all over the phone and not much was said. I was in awe. I April I have my Lung Specialist appointment.
Now Dr O'Conner did tell me where the Lymph node is located in the chest will be easy to get to do a biopsy. By cutting about an inch on my neck then follow down to the chest to get a nice piece he called it.
Wow this is just getting more and more interesting every day.
Sometimes I feel like a basketball going from one doctor to another then sometimes I feel like a car you fix one thing and then they find something else. I am just blank feeling you know. I guess because now it is getting I guess closer to finding what is going on? Not sure it is very puzzling. Anyway a Lung specialist and not telling me over the phone? I am so lost now. I still need lots of prayers to continue for me and my family.
It has been a very rough few months, just think in 6 months it will be a year when we first started this journey in finding the problem. I sure hope we are getting closer I really do.
I have so many friends keeping me uplifted and others with their prayers I feel them. I even have been waking up in the middle of the night thinking about certain people so I start praying for them not knowing which isn't what it's about it's praying and keeping the faith that matters and all else is the victory and the testimony I give to others.
I will overcome and rise again!!
God bless you and thank you for being a very good friend during such a crazy time in my life.
No matter how bad this comes out I am a child of GOD and he will have a reason. I told my mom if my life was ending no matter what I go through I am one to do what I can to save another or more.
I grew up with my older sister Robin, 1959, and a brother Kenny, 1960 and at 15 my sister found out she had Multiple Sclerosis. But my mom believes she may have had it much younger because she fell around more than other kids her age; one time, I will never forget, she got hit by a car.
I always grew up feeling out of place because of being overweight and so in school I read the how to get popular books and they worked. The secret is if someone that doesn't like you or has ever expressed not liking you or try to get to know you then when you see them just say "Hi" you make the first try. That's the secret and I took it one day at a time.
My brother is now married and has a son. Robin has been in a nursing home since 1995 due to her progression of the MS. I on the other hand never knew or expected what was ahead for me. One night changed my life forever.
December, 1988 the Friday night after Christmas because I was excited about going out with my friends to "Tully's" the local Bar & Grill. I put on the beautiful Gold satin blouse along with my black pants my mom gave me for Christmas. I was sitting at a booth window which faced the parking lot of the restaurant and heard noises outside so I looked and there were 2 men beating terribly on another man all alone and others were standing there doing nothing. My friend Toni, (she's a longtime school friend) and I went outside to try to help in some way and as we went out the door I remember telling the door man what we saw.. We went outside and yelled as we walked closer (nothing stops me when someone is in need of help). As we got closer we told the guys to stop and that the police were on their way and 2 went one way the other guy in the opposite direction. Toni and I started to walk away. Not even 5 feet away we heard them running back toward the one guy and BAM!! Down he went on the ground. The police started coming into the parking lot and no one had seen if this guy was ok. So I went towards the guy to ask if he were ok and he said "Please help me" and what you do but help. I reached down and pulled him up between the two cars and without realizing there was ALOT of blood, you couldn't see because it was dark. In the 80's AIDS was just being brought out and so I freaked. My hands were covered in blood. I immediately went to the doorman to let me in to wash my hands and he told me last call no one can enter and I even showed him my hands. Well I took a second to figure what in the world am I going to do so I looked around and there was snow on the ground in small piles so I stuck my hands in the snow in and out in and out until I couldn't really see any blood.
I got home and washed, scrubbed did what ever I had to do. I noticed my hands were stained kind of red. I checked for cuts and there was a small cut on my right thumb that hadn't quite healed yet. I forgot all about it the next day and went day to day about my business.
Then came February 1989, my complete physical....Blood work and lots of it. Then results showed non-A non-B hepatitis, so the testing kept going about once a month to monitor.
* 1990 - First round of treatment* 1993 - September 18, I got married then one week later ended up in the hospital for a severe pelvic infection then two weeks later went back for surgery due to ovarian cysts. While under they found signs of cirrhosis
* 1999 - 2nd round of treatment
* 2001 - Rotator Cuff surgery and tested my liver, and the cirrhosis still the same* 2004 - Blood work is abnormal and now my cirrhosis has changed to stage 2, there was discussion of a liver transplant but we'll wait right now because my numbers aren't where they need to be, also I found out I am Geno type 1-A Chronic Active
* October 2004 - Filed for my Disability per doctor's orders
* November 2005 - Started treatment for 3rd time, very different this time and much sicker than in past. Symptoms were very sick. The medicine ate the lining of my stomach and hurt so bad and was very uncomfortable so the acid reflux had gotten worse also. I had many headaches much worse than the daily to every other day headaches I was used to still bothered me.
* March 2006 - Blood Work showed change in levels of Viral Load went to -50 which indicates no signs of Hepatitis C, BUT don't get excited yet that's why Hepatitis C carries the sign of the dragon, because there is NO CURE and NO VACCINE it hides for a while then attacks again.
* November 2006 - Ended treatments due to doctors orders and showing no signs right now
As of today I have the following: Please for more information I have linked most of my symptoms.
• Stage 2 Fibrosis
• Enlarged Spleen - due to liver not functioning at 100%
• Thyroid problems - under active
• More fatigue, very very tired!
• Spasms Cramping all over
• Hurt all over in different Ares from side to back to legs
• Joints hurt
• Swelling
• Dry Mouth
• Noise Bleeds
• Trouble Concentrating
• Trouble Remembering
• Itchy skins area's - right wrist area, occasionally under both breasts (sorry)
I am currently fighting for my Disability but my age they say is hindering the process, but my Faith over-rides that theory. The list goes on but I will up date as each day goes.
Please continue to pray for me and my husband Rich for finances, physical, spiritual guidance, encourage us and comfort us with prayers for peace. I know the lord will take care of us but with Rich the ONLY income it is getting more and more harder to keep going. But I am NOT giving up Hope or Courage!
God Bless You, Laurie
Doctor Rudman is going over my lab work because it was my 3 month check up since January.
Well your viral load is up and the virus is back up to 2,200,000. (My heart sank), then he said we need to do another biopsy since my last one was in 1999 when I had rotator cuff surgery and they took a biopsy then. This will show how far the cirrhosis has spread.
After Biopsy I have to stay at least 8 hours to be sure of no complications. The doctors were telling me there is a new medicine out that's a shot per day along with pills again. But, they say I shouldn't get as sick as the last time. ugh.
Please keep me in pray for Finances and Health
Liver Biopsy Day 8:30am checked in short wait then sent back to Same Day Surgery the normal Blood pressure, temperature etc...Go over procedure with OR Nurse 10:40 taken to Radiology and no time to wait then in to a room There were 3 Nurses, the sonogram Tech, one doctor and a doctor in training, and one nurse to keep me calm I am very nervous at this point with all of these people in the room but for Stat procedures you have too in case of complications. The Doctor told me when to breath, hold it and not move. If one move it could slice the liver and I am not going there.
Ok now it's time, he uses the sonogram to locate the liver, then finds his spot (mind you in 1989 my first biopsy wasn't so easy and pain free I had one nurse and one doctor and no sono machine, just imagine, ewwww) He says you will feel a bee sting and then yet another, in he went, then he says Laurie I am sorry but I need to go in again; I didn't get enough, (Did not want to hear that) so in he went and it was over.
Went back to my room now lying only on my right side facing the next 6 hours in that position. (Bleeding from the biopsy can help clot the area so no internal bleeding later.) I got one shot of Morphine and I tried to sleep but it didn't help, 2 hours later my mom and Aunt came back and they were glad to see no complications. My best friend and her mom came back to pray and talk to me before heading back 2 hours away. So after 3 hours another shot of morphine, you will feel a little sleepy, wow I feel it now ready to sleep for years. So off to la la land I went I was discharged at 6:30pm
Now the next week would be the hardest, moving and waiting on results.
Dr Rudman and another doctor were explaining bits and pieces to me but could only grab what I could understand. My Liver is now stage 4 cirrhosis and I NOW have what’s called Fatty Liver Disease (NASH). This now grows concern for my doctors because he explained to me that the two Hepatitis C and Fatty Liver Disease (NASH) are FATAL together.
So now a new Disease to fight against.
My doctors are saying we have to put the Hepatitis C to the side and get to the Fatty Liver right away. Because Cryptogenic cirrhosis is a common cause of liver-related morbidity and mortality in the United States. Nonalcoholic fatty liver disease (NAFLD) is now recognized as the most common cause of cryptogenic cirrhosis. However, the diagnosis of cirrhosis in patients with NAFLD appears to be delayed compared with those with other chronic liver diseases and thus carries a higher mortality rate.
Please keep me in prayer!
Today I got the call from Dr O'Conner about my PET Scan results. hummmmm
Well, now I have swollen lymph nodes located in the chest and the spleen looks suspicious (what does that mean?) I had to set up another CAT Scan and a visit with a Lung specialist. Not sure why on that one this was all over the phone and not much was said. I was in awe. I April I have my Lung Specialist appointment.
Now Dr O'Conner did tell me where the Lymph node is located in the chest will be easy to get to do a biopsy. By cutting about an inch on my neck then follow down to the chest to get a nice piece he called it.
Wow this is just getting more and more interesting every day.
Sometimes I feel like a basketball going from one doctor to another then sometimes I feel like a car you fix one thing and then they find something else. I am just blank feeling you know. I guess because now it is getting I guess closer to finding what is going on? Not sure it is very puzzling. Anyway a Lung specialist and not telling me over the phone? I am so lost now. I still need lots of prayers to continue for me and my family.
It has been a very rough few months, just think in 6 months it will be a year when we first started this journey in finding the problem. I sure hope we are getting closer I really do.
I have so many friends keeping me uplifted and others with their prayers I feel them. I even have been waking up in the middle of the night thinking about certain people so I start praying for them not knowing which isn't what it's about it's praying and keeping the faith that matters and all else is the victory and the testimony I give to others.
I will overcome and rise again!!
God bless you and thank you for being a very good friend during such a crazy time in my life.
No matter how bad this comes out I am a child of GOD and he will have a reason. I told my mom if my life was ending no matter what I go through I am one to do what I can to save another or more.
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