Monday, March 22, 2010
Daves' Story
"I was diagnosed in the late 1990's and had a biopsy in 2003. I didn't get the results until 2008 as the specialist left the country right after my first biopsy. I was floated around the medical system with them telling me I had heart problems (not) that would make treatment difficult. I finally got into the Toronto liver clinic (excellent place) and they had accepted me in a clinical study starting pegintron/ribovarin in Oct 2008. The day I was to start they told me I had liver cancer and would be operated on in December. It was a successful radio frequency abolation but was informed no treatment until 6 months free of cancer. I could not go on the treatment until June 2009 and cannot participate in any clinical studies as I am now deemed cancerous. I was a fast responder then got very sick on the treatment and needed a hemoglobin transfusion (I was getting epo injections with my pegintron) during which I caught c-diff in the hospital. That ended the treatment and I have been getting stronger (9 months later) and maybe can redo the treatment in the fall. The treatment was worse than the virus and I still have some residual effects...dry eyes, abdominal pain, brain fog, etc but reganing lost muscle mass and some hair, not looking as yellow. I have recently experienced portal hypertension, a good sign that my liver is getting worse. I am not a transplant candidate as I still have 30% liver function.
Saturday, March 20, 2010
My Personal Hepatitis C Story
I live in South Florida between Miami and Ft. Lauderdale. Had been going to a primary care doctor and having annual physicals with all the blood work. It got so I was waiting 2 hours to see my primary care physician when my mom told me she had found a doctor she liked so I said why not and went to see him. He did my annual physical and when I went back for the results of the blood work he said “your liver enzymes are elevated and you have hepatitis c”. I guess if I had not changed primary care physicians I would have not found out until my liver failed! He referred me to a gastro and sent me home.
I went on the internet and started searching for what was hepatitis c and found all these horror stories of the treatment and the effects of the disease. I called my mom and my husband and said “I’m dying!”. My good old mom called the doctor’s office and screamed at him and said how could you send her home with no information?
The gastroenterologist I had been referred to could not see me for over a month and I was not waiting, I wanted answers now. I found another gastro and made an appointment. When I went into see her she stared with conversation like “the statistics are 50/50, you cannot eat shellfish and now you must go down and get a liver biopsy”. I left there in shock.
I had not cancelled my appointment with the gastro I was referred to and went to see him. What a difference in that appointment from the first gastro I went to see. He explained to me the treatment and said he was doing a study and he could provide my meds for free but that I would have to agree to let him follow me for 5 years. He said I needed a liver biopsy to see where my liver was and some blood tests to see my viral load and how my liver was functioning at this point. I said oh no, I’m not letting you do a liver biopsy. Well, he walked out of the room and said well I won’t treat you. I went running down the hall after him going wait wait LOL
I did all the tests and had the liver biopsy. I’m phobic with needles and blood and made myself a wreck before that liver biopsy. That was the worst part of my liver biopsy, me making myself a wreck. They gave me something before hand to settle my nerves and I did get a punch in the shoulder feeling but besides the fact that I had to lay on my side for hours in boredom it was a pretty uneventful procedure.
The result of those tests was that my liver was grade 3/stage 2 - half way to cirrhosis. Blood work revealed that I was genotype 1A, alt and ast was in the high 50s and my viral load was 1 million. I decided I was going to try and kill this virus if I could; figured if I could not take the treatment I would stop but I was going to at least try.
My doctor’s study nurse brought me to the office and showed me how to mix up the pegalated interferon alpha 2B, it came in 2 bottles with 2 syringes. She demonstrated on an orange and handed me a video and a card with the steps. I also was to take 5 ribavarin daily. That was that.
I got home, wiped off the counter with alcohol and couldn’t get the cap off the syringe, jabbed it into my thumb and was bleeding all over the place before I even started. I found a forum I had been going into for support and went online and they talked me through the process. Don’t know what I would have done without those people!
After the shot I took some alleve and went to bed. The next day I had a slight fever and felt pretty wiped out and just slept most of the day.
I did complete all 48 weeks of shots and continued working except the last 6 weeks where I had to take a leave because I became very anemic. First 6 months was not so bad as I did my shot late Friday night and was off the weekends so I rested. After the first 6 months my blood counts just plummeted. The doctor did start me on procrit to raise my counts but it did not do much I was so far gone and almost done with the 48 weeks. Towards the end of treatment I did not do much except lay on the couch. I did clear the virus at 12 weeks.
I was diagnosed the end of 2001 and started treatment in early 2002 and finished Friday, December 13th, 2002….I have been clear ever since.
Treatment was not a walk in the park, it was hard not just for me but for my whole family. I was depressed, lost a lot of my hair and was miserable most of the time, but it was doable. I kept telling myself that it was not forever, it was just a year…I told myself this over and over again LOL
I ran a Delphi support forum for about 5 years but have since stopped that. Figured I had given back what I had gotten and wanted to move on and start living again. I also participated actively in the March on DC for about 4 years, which was a wonderful event and great to meet others going through the same thing. I have organized several Hep C Festivals here in South Florida and in the middle of Florida.
I continue to support others one on one or by email. I also spread the word by telling people I have this disease and that everybody should be tested. I had no clue about this disease when I was diagnosed, knowledge is power. The best part of helping a newly diagnosed person is letting them know that it is ok, nothing to be ashamed of and they will be shocked to know how many actually have this disease…if they just ask or mention they have it. More die with HCV than of it.
I went on the internet and started searching for what was hepatitis c and found all these horror stories of the treatment and the effects of the disease. I called my mom and my husband and said “I’m dying!”. My good old mom called the doctor’s office and screamed at him and said how could you send her home with no information?
The gastroenterologist I had been referred to could not see me for over a month and I was not waiting, I wanted answers now. I found another gastro and made an appointment. When I went into see her she stared with conversation like “the statistics are 50/50, you cannot eat shellfish and now you must go down and get a liver biopsy”. I left there in shock.
I had not cancelled my appointment with the gastro I was referred to and went to see him. What a difference in that appointment from the first gastro I went to see. He explained to me the treatment and said he was doing a study and he could provide my meds for free but that I would have to agree to let him follow me for 5 years. He said I needed a liver biopsy to see where my liver was and some blood tests to see my viral load and how my liver was functioning at this point. I said oh no, I’m not letting you do a liver biopsy. Well, he walked out of the room and said well I won’t treat you. I went running down the hall after him going wait wait LOL
I did all the tests and had the liver biopsy. I’m phobic with needles and blood and made myself a wreck before that liver biopsy. That was the worst part of my liver biopsy, me making myself a wreck. They gave me something before hand to settle my nerves and I did get a punch in the shoulder feeling but besides the fact that I had to lay on my side for hours in boredom it was a pretty uneventful procedure.
The result of those tests was that my liver was grade 3/stage 2 - half way to cirrhosis. Blood work revealed that I was genotype 1A, alt and ast was in the high 50s and my viral load was 1 million. I decided I was going to try and kill this virus if I could; figured if I could not take the treatment I would stop but I was going to at least try.
My doctor’s study nurse brought me to the office and showed me how to mix up the pegalated interferon alpha 2B, it came in 2 bottles with 2 syringes. She demonstrated on an orange and handed me a video and a card with the steps. I also was to take 5 ribavarin daily. That was that.
I got home, wiped off the counter with alcohol and couldn’t get the cap off the syringe, jabbed it into my thumb and was bleeding all over the place before I even started. I found a forum I had been going into for support and went online and they talked me through the process. Don’t know what I would have done without those people!
After the shot I took some alleve and went to bed. The next day I had a slight fever and felt pretty wiped out and just slept most of the day.
I did complete all 48 weeks of shots and continued working except the last 6 weeks where I had to take a leave because I became very anemic. First 6 months was not so bad as I did my shot late Friday night and was off the weekends so I rested. After the first 6 months my blood counts just plummeted. The doctor did start me on procrit to raise my counts but it did not do much I was so far gone and almost done with the 48 weeks. Towards the end of treatment I did not do much except lay on the couch. I did clear the virus at 12 weeks.
I was diagnosed the end of 2001 and started treatment in early 2002 and finished Friday, December 13th, 2002….I have been clear ever since.
Treatment was not a walk in the park, it was hard not just for me but for my whole family. I was depressed, lost a lot of my hair and was miserable most of the time, but it was doable. I kept telling myself that it was not forever, it was just a year…I told myself this over and over again LOL
I ran a Delphi support forum for about 5 years but have since stopped that. Figured I had given back what I had gotten and wanted to move on and start living again. I also participated actively in the March on DC for about 4 years, which was a wonderful event and great to meet others going through the same thing. I have organized several Hep C Festivals here in South Florida and in the middle of Florida.
I continue to support others one on one or by email. I also spread the word by telling people I have this disease and that everybody should be tested. I had no clue about this disease when I was diagnosed, knowledge is power. The best part of helping a newly diagnosed person is letting them know that it is ok, nothing to be ashamed of and they will be shocked to know how many actually have this disease…if they just ask or mention they have it. More die with HCV than of it.
Friday, March 19, 2010
Terrie's Story
I'm a 48 year old woman, living in the mountains of N.W. Montana. I was diagnosed in April '06 after a routine annual exam. My liver enzymes were elevated so we tested for Hepatitis. I had just had a friend who had passed due to years of fighting the virus only 6 months prior, so I was already aware of HCV. My best friend and her husband had also tested positive for HCV, but she was unable to be genotyped and shows no viral load, so she must have spontaneously cleared.
Anyway, I digress. When I was diagnosed, it wiped me out. I was vocal with my friends about the virus and found I had other friends who had undergone treatment and there was one who had been diagnosed a few months prior to me and was undergoing treatment. Cancer had taken hold of him and treatment had been unsuccessful. I saw him when he was jaundiced and fighting accites which rocked me to my core and scared me more than anything. He subsequently passed about 1 month after I saw him. Another devastating blow.
I was surprised by how many people had it, but no one talked about it. The stigma is so strong, even when the public knowledge is minimal. People are so afraid of being judged for having an illness that may have been contracted by drug use, even if it was only one time or done years ago.
Back to me, I was genotyped as 4. That was another surprise since it is so rare in the U.S. I had used IV drugs in the 70s and had dabbled in snorting drugs into the early 80s. Along with the drug use was a sexually permissiveness that could have been a means of contracting it, but those didn't feel right.
I had been hit by a car in 1963, the day before my 2nd birthday and had massive internal injuries including a ruptured liver, which led to large blood transfusions.
Upon researching genotype 4 populations in this country I found there just happens to be one of the two main populations in Minnesota where my accident occurred. So, I'm pretty sure that's where I contracted this. Genotype 4 is slower progressing, but is treated here the same as 1a. It tends to be resistant to treatment. The research regarding genotype 4 is occurring in Egypt, where it is the prevalent genotype. (I have never been to Egypt or known anyone who has been there.)
I was on chronic pain management at the time I was diagnosed for back pain, taking opioids and muscle relaxers. My first GI wanted me to begin treatment right away, but I had a problem with the way he treated me as a person, so I sought another doctor. I found another one who thought I was doing quite well. If my accident had been my means of transmission, my body has fought this all of my life and faired pretty well. He informed me that if I did want to do treatment that it tended to be unsuccessful when opioids were used as pain meds. I weaned myself from my pain med addiction and am now free of them. That doctor turned out to not meet my expectations and now I'm on my third. I refuse to be marginalized or treated as less than worthy of the best care. I'm so fortunate to have a supportive husband and son along with adequate health insurance to cover my expenses.
I started reading as much as I could about HCV and various types of treatment. Having two friends pass due to this virus even after conventional treatment scared me, so I have opted for the time being to use herbal therapy.
I seem to be doing well on herbal therapy, at least as far as I can tell. My liver panels have all been in the normal range since I began and my viral load tests have all come back lower each year. The second year, it had dropped by half, to just under 2 million. I'm getting my yearly viral load test done again on Friday, which is always anxiety inducing. I just keep hoping this is still working for me. I'll be ready for my second biopsy next year unless this test indicates I need it sooner.
This has been a blessing in disguise. I have cleaned up my diet, quit drinking, smoking and taking pain meds. I exercise regularly and am attempting to lose the weight I've allowed to build up over the years, especially what I've gained since I quit smoking. I have gardened for years and eaten organically as much as possible. Since we live so rurally, I do all the cooking so I don't deal with fast food or restaurants much. We're fortunate to live in an amazingly healthy environment.
One of the things that bother me most is the thought that I have passed this virus on to other without ever knowing it. I realize it was not intentional, however if there was adequate public awareness of this then fewer people would inadvertently be infected. I was terrified I had passed this to my son at birth (I had a Cesarean Section and the presence of blood to a new born is a huge risk) He tested negative, thank God. My husband has not been tested, but that's his choice. We treat all blood spills, even what most people would think as nothing, as biohazard. Can't be too careful.
I am a member of Debbullan, Inc. Board of Directors and take every opportunity I can to spread information about this virus. I speak openly to everyone about my having it and how I may have gotten it. If I'm stigmatized by this, it's out of ignorance, and I aim to combat that. I’m a substitute teacher for a small Jr. High/ High school and most of the kids, a student body of about 300, know that I have HCV and how it's transmitted. With so much piercing and tattooing among today's youth they need to be informed.
So, there's my story thus far. I hope this is helpful to others. I'm always happy to answer questions about HCV, my experience with it, how I'm treating it, and coping.
Anyway, I digress. When I was diagnosed, it wiped me out. I was vocal with my friends about the virus and found I had other friends who had undergone treatment and there was one who had been diagnosed a few months prior to me and was undergoing treatment. Cancer had taken hold of him and treatment had been unsuccessful. I saw him when he was jaundiced and fighting accites which rocked me to my core and scared me more than anything. He subsequently passed about 1 month after I saw him. Another devastating blow.
I was surprised by how many people had it, but no one talked about it. The stigma is so strong, even when the public knowledge is minimal. People are so afraid of being judged for having an illness that may have been contracted by drug use, even if it was only one time or done years ago.
Back to me, I was genotyped as 4. That was another surprise since it is so rare in the U.S. I had used IV drugs in the 70s and had dabbled in snorting drugs into the early 80s. Along with the drug use was a sexually permissiveness that could have been a means of contracting it, but those didn't feel right.
I had been hit by a car in 1963, the day before my 2nd birthday and had massive internal injuries including a ruptured liver, which led to large blood transfusions.
Upon researching genotype 4 populations in this country I found there just happens to be one of the two main populations in Minnesota where my accident occurred. So, I'm pretty sure that's where I contracted this. Genotype 4 is slower progressing, but is treated here the same as 1a. It tends to be resistant to treatment. The research regarding genotype 4 is occurring in Egypt, where it is the prevalent genotype. (I have never been to Egypt or known anyone who has been there.)
I was on chronic pain management at the time I was diagnosed for back pain, taking opioids and muscle relaxers. My first GI wanted me to begin treatment right away, but I had a problem with the way he treated me as a person, so I sought another doctor. I found another one who thought I was doing quite well. If my accident had been my means of transmission, my body has fought this all of my life and faired pretty well. He informed me that if I did want to do treatment that it tended to be unsuccessful when opioids were used as pain meds. I weaned myself from my pain med addiction and am now free of them. That doctor turned out to not meet my expectations and now I'm on my third. I refuse to be marginalized or treated as less than worthy of the best care. I'm so fortunate to have a supportive husband and son along with adequate health insurance to cover my expenses.
I started reading as much as I could about HCV and various types of treatment. Having two friends pass due to this virus even after conventional treatment scared me, so I have opted for the time being to use herbal therapy.
I seem to be doing well on herbal therapy, at least as far as I can tell. My liver panels have all been in the normal range since I began and my viral load tests have all come back lower each year. The second year, it had dropped by half, to just under 2 million. I'm getting my yearly viral load test done again on Friday, which is always anxiety inducing. I just keep hoping this is still working for me. I'll be ready for my second biopsy next year unless this test indicates I need it sooner.
This has been a blessing in disguise. I have cleaned up my diet, quit drinking, smoking and taking pain meds. I exercise regularly and am attempting to lose the weight I've allowed to build up over the years, especially what I've gained since I quit smoking. I have gardened for years and eaten organically as much as possible. Since we live so rurally, I do all the cooking so I don't deal with fast food or restaurants much. We're fortunate to live in an amazingly healthy environment.
One of the things that bother me most is the thought that I have passed this virus on to other without ever knowing it. I realize it was not intentional, however if there was adequate public awareness of this then fewer people would inadvertently be infected. I was terrified I had passed this to my son at birth (I had a Cesarean Section and the presence of blood to a new born is a huge risk) He tested negative, thank God. My husband has not been tested, but that's his choice. We treat all blood spills, even what most people would think as nothing, as biohazard. Can't be too careful.
I am a member of Debbullan, Inc. Board of Directors and take every opportunity I can to spread information about this virus. I speak openly to everyone about my having it and how I may have gotten it. If I'm stigmatized by this, it's out of ignorance, and I aim to combat that. I’m a substitute teacher for a small Jr. High/ High school and most of the kids, a student body of about 300, know that I have HCV and how it's transmitted. With so much piercing and tattooing among today's youth they need to be informed.
So, there's my story thus far. I hope this is helpful to others. I'm always happy to answer questions about HCV, my experience with it, how I'm treating it, and coping.
Tuesday, March 16, 2010
Daryl's Story
I would like to begin my story with a salute to all of those people that have helped me, and others. Diagnosed with HCV, it has never mattered to me how someone was infected. I know people that used drugs and shared needles, as well as people that have received the virus through tainted blood transfusions, and none of it matters to me. What matters most is that people with HCV need help, and that help takes many forms. I am fortunate enough not to have the severe financial burden that many with this disease face. I can’t imagine what it must feel like to face HCV without medical options as well as any semblance of a support system, which I believe is so very important. I am deeply discouraged by the stigma that we all face when we are diagnosed with HCV.
I never knew many things about this disease until I was diagnosed. I began a journey toward understanding and knowledge, and ultimately ridding my body of this terrible virus. The journey actually began when I was hospitalized two years ago with extreme abdominal pain. After three days in the hospital, and many scans and tests later, all that they came up with was that I needed to have a hernia repair. They asked several times “why was I there”. I am otherwise a healthy person, with the exception of having asthma that is treated successfully.
In the next several months I underwent many tests that included colonoscopy, gastroscopy, many blood tests, a CT scan, and finally while being pre-screened for the hernia repair it was discovered that my iron levels were high. This finally led my primary care doctor to check for hepatitis with more blood work. The preliminary screen showed that I might have the virus. The second blood test confirmed that I did have HepC. That was in July 2009.
I was devastated by this news. The next couple of months were very difficult for me. In my mind my life was over. I am 55 years old, with so much I want to do in my life, and now I am going to die. That went through my mind over and over. As I began to research the virus, it didn’t get much better, because it seemed like it was all bad news. I was obsessed with it, and I couldn’t get it off my mind.
The next step was to see a Hepatologist. More blood work was ordered to determine my genotype, etc. It came back as genotype 1b, and I was told that it was the most resistant to treatment. It was just more bad news. It seemed like that was the only news I was going to get. The next step was a liver biopsy in early December 2009. That produced some good news about my liver. I was happy to learn that I was stage 0-1, which means that there is little damage to my liver from the disease. I was so happy to finally hear something positive, and it was a great relief for my wife and family. The next step was to plan for treatment. I was asked if I would be interested in participating in a drug trial along with standard treatment. The Hepatologist gave me three options actually. The first was to do nothing, the second was standard treatment, and the third was with the drug trial. I decided that I would go into the trial because the drug had shown a substantial increased chance of clearing the virus, and reaching SVR. Since deciding to be a part of the trial I have undergone many screening tests to determine if I am suitable. The only thing they found during screening was that I have a condition called optic nerve drusen.
I am scheduled to start treatment in a few days, and as far as I know I have been accepted to participate. As I begin the next stage of my journey, I have a sense of relief mixed with anxiety about how the drugs affect me. I want to continue to work as much as I can, and keep my life as real as possible. I want to continue to be myself, and not be defined by this disease. Something that is very important to me is that there be more awareness and education about HCV so that people will get tested, get treated, and get better, without all of the added burden of stigma, isolation, and financial hardship.
Update on Daryl's Treatment Journey
Update of my story as of April 18, 2010
Day 31 of treatment for HCV, genotype 1a
Clinical Trial with new drug and SOC
I started treatment March 19th. It was a little scary, but I had long since made up my mind to treat. Determined I was. Because I am in a clinical trial, the first shot was done at the Institute where I am being treated, and that made it a little easier. I had no side effects until on the third day. It started with itchiness not unfamiliar to me, and progressed to the point that night where I felt the side effects that are often called flu-like. Worse flu I ever had.
For the next week and a half I had all kinds of strange things going on all over my body. I had severe shivers, and periods not long after taking the Copegus, where I felt extremely hyper. Another strange sensation was that everything smelled toxic, including me. I joked with my wife that I was a walking toxic waste dump. I use humor to deal with adversity, sometimes it works for me. Because of the smells, I could not, did not, want to eat. I lost 8 pounds in 9 days. I used ensure, drank lots of water and Gatorade, and by the second week my sense of smell started to return. I have since gotten my appetite back somewhat, and stopped the weight loss. Since then I have had an easier time with the treatment than I had in those first couple of weeks. I am not saying it was easy, and it still is not easy. I have months of treatment ahead. I have had some severe pain from an old injury, and we had to sort that out with the right meeds.That was not easy, and in fact was quite unpleasant. I have also had bouts of crying and incidents of rage, but I have wrestled with that fairly well so far.
My short term memory is very bad, and I hope it returns after treatment stops.
Having said all that, it has been generally tolerable so far. I do get some relief now and again from feeling sick and extremely tired. Some of the time I even feel better than I did before treatment started. I had suffered with symptoms from Chronic HCV for a while before diagnosis and treatment started.
One thing that has made it all much easier for me is the warmth and friendship I have found in a community of people at Janis and Friends. Betty has become a dear friend, and an inspiration to me. These people have saved my life. My wife has been solid as a rock behind me all the way in this journey; I could not have managed without her love and kindness. There are others, including my treatment nurse, the doctors, and on and on…there have been many. I am blessed for that. I also know how lucky I have been, and never lose sight of the reality that many are not so lucky in dealing with HCV. This saddens me.
At my two week tests, my viral load had dropped by 2.85 logs. It had come down from over 5 million to 7000 in two weeks. Given my genotype, this is apparently very good news by all accounts. This information was magic to me. I am convinced that I am getting the new drugs in the trial, not the placebo. I am in touch with others in the same trial that have experienced similar results. Not all have, unfortunately.
I want to say that there is hope for the future with new treatments. With any luck, some of these drugs are near approval for use with the current the SOC treatment.
We have a long road ahead, and I know it will not be an easy time. We need to raise awareness, educate, and bring the resources needed, to the people with this awful disease. The stigma and ignorance will be present for some time to come I am afraid. But if we talk about it, and keep a dialogue going, the narrative will change in time. It is my dream that some day we will be able to look back on our hard-fought battles with pride and dignity. And HCV will be a thing of the past. I hope that the politicians and decision-makers hear our message loud and clear.
We all need to help each other. We all deserve, as human beings, to have a chance to have good health. This is a basic human right in my opinion. I hope that I am successful in spreading hope to those in this community, and beyond, to include the families and friends of those infected.
Although it seems like there is no hope at times, and Oh- how I know how that feels. There is hope, and I believe it strongly.
I must..............
I never knew many things about this disease until I was diagnosed. I began a journey toward understanding and knowledge, and ultimately ridding my body of this terrible virus. The journey actually began when I was hospitalized two years ago with extreme abdominal pain. After three days in the hospital, and many scans and tests later, all that they came up with was that I needed to have a hernia repair. They asked several times “why was I there”. I am otherwise a healthy person, with the exception of having asthma that is treated successfully.
In the next several months I underwent many tests that included colonoscopy, gastroscopy, many blood tests, a CT scan, and finally while being pre-screened for the hernia repair it was discovered that my iron levels were high. This finally led my primary care doctor to check for hepatitis with more blood work. The preliminary screen showed that I might have the virus. The second blood test confirmed that I did have HepC. That was in July 2009.
I was devastated by this news. The next couple of months were very difficult for me. In my mind my life was over. I am 55 years old, with so much I want to do in my life, and now I am going to die. That went through my mind over and over. As I began to research the virus, it didn’t get much better, because it seemed like it was all bad news. I was obsessed with it, and I couldn’t get it off my mind.
The next step was to see a Hepatologist. More blood work was ordered to determine my genotype, etc. It came back as genotype 1b, and I was told that it was the most resistant to treatment. It was just more bad news. It seemed like that was the only news I was going to get. The next step was a liver biopsy in early December 2009. That produced some good news about my liver. I was happy to learn that I was stage 0-1, which means that there is little damage to my liver from the disease. I was so happy to finally hear something positive, and it was a great relief for my wife and family. The next step was to plan for treatment. I was asked if I would be interested in participating in a drug trial along with standard treatment. The Hepatologist gave me three options actually. The first was to do nothing, the second was standard treatment, and the third was with the drug trial. I decided that I would go into the trial because the drug had shown a substantial increased chance of clearing the virus, and reaching SVR. Since deciding to be a part of the trial I have undergone many screening tests to determine if I am suitable. The only thing they found during screening was that I have a condition called optic nerve drusen.
I am scheduled to start treatment in a few days, and as far as I know I have been accepted to participate. As I begin the next stage of my journey, I have a sense of relief mixed with anxiety about how the drugs affect me. I want to continue to work as much as I can, and keep my life as real as possible. I want to continue to be myself, and not be defined by this disease. Something that is very important to me is that there be more awareness and education about HCV so that people will get tested, get treated, and get better, without all of the added burden of stigma, isolation, and financial hardship.
Update on Daryl's Treatment Journey
Update of my story as of April 18, 2010
Day 31 of treatment for HCV, genotype 1a
Clinical Trial with new drug and SOC
I started treatment March 19th. It was a little scary, but I had long since made up my mind to treat. Determined I was. Because I am in a clinical trial, the first shot was done at the Institute where I am being treated, and that made it a little easier. I had no side effects until on the third day. It started with itchiness not unfamiliar to me, and progressed to the point that night where I felt the side effects that are often called flu-like. Worse flu I ever had.
For the next week and a half I had all kinds of strange things going on all over my body. I had severe shivers, and periods not long after taking the Copegus, where I felt extremely hyper. Another strange sensation was that everything smelled toxic, including me. I joked with my wife that I was a walking toxic waste dump. I use humor to deal with adversity, sometimes it works for me. Because of the smells, I could not, did not, want to eat. I lost 8 pounds in 9 days. I used ensure, drank lots of water and Gatorade, and by the second week my sense of smell started to return. I have since gotten my appetite back somewhat, and stopped the weight loss. Since then I have had an easier time with the treatment than I had in those first couple of weeks. I am not saying it was easy, and it still is not easy. I have months of treatment ahead. I have had some severe pain from an old injury, and we had to sort that out with the right meeds.That was not easy, and in fact was quite unpleasant. I have also had bouts of crying and incidents of rage, but I have wrestled with that fairly well so far.
My short term memory is very bad, and I hope it returns after treatment stops.
Having said all that, it has been generally tolerable so far. I do get some relief now and again from feeling sick and extremely tired. Some of the time I even feel better than I did before treatment started. I had suffered with symptoms from Chronic HCV for a while before diagnosis and treatment started.
One thing that has made it all much easier for me is the warmth and friendship I have found in a community of people at Janis and Friends. Betty has become a dear friend, and an inspiration to me. These people have saved my life. My wife has been solid as a rock behind me all the way in this journey; I could not have managed without her love and kindness. There are others, including my treatment nurse, the doctors, and on and on…there have been many. I am blessed for that. I also know how lucky I have been, and never lose sight of the reality that many are not so lucky in dealing with HCV. This saddens me.
At my two week tests, my viral load had dropped by 2.85 logs. It had come down from over 5 million to 7000 in two weeks. Given my genotype, this is apparently very good news by all accounts. This information was magic to me. I am convinced that I am getting the new drugs in the trial, not the placebo. I am in touch with others in the same trial that have experienced similar results. Not all have, unfortunately.
I want to say that there is hope for the future with new treatments. With any luck, some of these drugs are near approval for use with the current the SOC treatment.
We have a long road ahead, and I know it will not be an easy time. We need to raise awareness, educate, and bring the resources needed, to the people with this awful disease. The stigma and ignorance will be present for some time to come I am afraid. But if we talk about it, and keep a dialogue going, the narrative will change in time. It is my dream that some day we will be able to look back on our hard-fought battles with pride and dignity. And HCV will be a thing of the past. I hope that the politicians and decision-makers hear our message loud and clear.
We all need to help each other. We all deserve, as human beings, to have a chance to have good health. This is a basic human right in my opinion. I hope that I am successful in spreading hope to those in this community, and beyond, to include the families and friends of those infected.
Although it seems like there is no hope at times, and Oh- how I know how that feels. There is hope, and I believe it strongly.
I must..............
Monday, March 15, 2010
Lisa's Story
Hi all. My name is Lisa. I am a white 52-year-old female genotype 1b grade 1 stage 0. I was diagnosed about 7 years ago and almost lost it. I couldn't believe it. My gastro said wait for a better treatment to come out since my biopsy revealed little damage. For several years I had symptoms of hep c exhibiting as rollout. it was very painful, interfered with work and personal life, and no Dr. knew what I had. I was misdiagnosed for 2 years, got fed up, and diagnosed myself with the help of the Internet. That kick started my treatment Sept. 11 2009. Good Lord, talk about being hit by a train!!!! I consider myself a tough cookie and have been through a lot of trauma in my life. but I was not at all prepared for the fatigue, malaise, pain, nausea, loss of appetite, etc. etc. that followed. I was already on anti-depressants when I started treatment and thought that was sufficient. Two months of crying and suicidal thoughts took me back to my Dr. who prescribed extra anti-depressants. they saved my life. truly.
It's been the battle of a lifetime. As bad as my two divorces, but isolating. I was thinking about it today....a friend I know broke her fingers and required surgery. She is able to talk about it to anyone and share and they can see and understand her pain. Our pain is hidden. No one sees it or can feel it. they don't understand the brain fog, the digestive problems, persistent fatigue, insomnia, etc., and we are really isolated. Personally I don't talk about it to anyone for fear of being judged. I am single and that has a lot to do with it. I protect myself from whatever makes me unhappy or scared and people just plain don't understand hep c or the debilitating effects of the treatment like they do chemo.
I started to feel better around week 10. The first 10 weeks all I could do was work and sleep. I had to sleep 12 hours a day and on my days off I would sleep 16 hours or more. I went over to my mom's house for dinner because I was too tired to cook or shop. Thank goodness I got better, but very gradually. I work at it like crazy. I read uplifting things, try to do things that make me happy, don't do anything outside of work that requires energy I don't have. sometimes I get tired of not having a life, but then I try to remember that this treatment is working for me and how blessed I am that it does. there are so many hep c folks that treatment doesn't work for. I don't read depressing articles about hep c even though everyone says you should be informed. I am informed more about nutrition and exercise and what I can do to make my body healthy. I try to put my energy into things I have control over and not worry about what I don't or can't control.
This is not to say it's a cakewalk now. I've been so tired this past month I haven't performed well at work and I have too many days where I just have a complete breakdown--physically, emotionally, spiritually--you name it. Then I have to rebuild. I let myself cry if I need it, but not too long. I see a therapist. I get a massage. I hug dogs. I remember that one day I will live again and actually have a life. That will be amazing. I try to be grateful for what I have.
The journey isn't just an assault on your body. your spirit, your soul, your thoughts, your brain--they all change as well. It is such a cataclysmic shift it's hard to adjust.
I have become a kinder, more compassionate person through this. I have learned to forgive myself. I have learned to set limits and say 'no.' I have learned that life isn't perfect or fair and that's just the way it is. I have learned every person with hep c is different and what works for me won't necessarily work for you. Find your path. I even write down what works for me because my brain forgets stuff all the time.
Slough off the stuff that doesn't matter. I finally stopped shaving my legs because I don't have the energy and who the hell will see anyway? I let go of being perfect and desirable all the time. My skin is like a snake's and I am pretty pale. When I get tired, really tired, I just cannot function. I must go to bed. take care of myself.
I have one good friend I bitch to a little, but everyone has their limits. mostly there is no one who wants to hear every freakin' detail of what aggravates you and the downfalls of the treatment, so I write poems about how I feel and that helps. I try not to abuse my friends and family with complaints. it isn't their job to carry me and they won't anyway, they can't. it's my journey.
well, I have certainly rambled a lot here. if this helps just one person, I feel the treatment will have all been worth it. I found a great friend on Janis & Friends who was so compassionate he made me cry. the websites are invaluable. Great resources and always someone to listen.
It's been the battle of a lifetime. As bad as my two divorces, but isolating. I was thinking about it today....a friend I know broke her fingers and required surgery. She is able to talk about it to anyone and share and they can see and understand her pain. Our pain is hidden. No one sees it or can feel it. they don't understand the brain fog, the digestive problems, persistent fatigue, insomnia, etc., and we are really isolated. Personally I don't talk about it to anyone for fear of being judged. I am single and that has a lot to do with it. I protect myself from whatever makes me unhappy or scared and people just plain don't understand hep c or the debilitating effects of the treatment like they do chemo.
I started to feel better around week 10. The first 10 weeks all I could do was work and sleep. I had to sleep 12 hours a day and on my days off I would sleep 16 hours or more. I went over to my mom's house for dinner because I was too tired to cook or shop. Thank goodness I got better, but very gradually. I work at it like crazy. I read uplifting things, try to do things that make me happy, don't do anything outside of work that requires energy I don't have. sometimes I get tired of not having a life, but then I try to remember that this treatment is working for me and how blessed I am that it does. there are so many hep c folks that treatment doesn't work for. I don't read depressing articles about hep c even though everyone says you should be informed. I am informed more about nutrition and exercise and what I can do to make my body healthy. I try to put my energy into things I have control over and not worry about what I don't or can't control.
This is not to say it's a cakewalk now. I've been so tired this past month I haven't performed well at work and I have too many days where I just have a complete breakdown--physically, emotionally, spiritually--you name it. Then I have to rebuild. I let myself cry if I need it, but not too long. I see a therapist. I get a massage. I hug dogs. I remember that one day I will live again and actually have a life. That will be amazing. I try to be grateful for what I have.
The journey isn't just an assault on your body. your spirit, your soul, your thoughts, your brain--they all change as well. It is such a cataclysmic shift it's hard to adjust.
I have become a kinder, more compassionate person through this. I have learned to forgive myself. I have learned to set limits and say 'no.' I have learned that life isn't perfect or fair and that's just the way it is. I have learned every person with hep c is different and what works for me won't necessarily work for you. Find your path. I even write down what works for me because my brain forgets stuff all the time.
Slough off the stuff that doesn't matter. I finally stopped shaving my legs because I don't have the energy and who the hell will see anyway? I let go of being perfect and desirable all the time. My skin is like a snake's and I am pretty pale. When I get tired, really tired, I just cannot function. I must go to bed. take care of myself.
I have one good friend I bitch to a little, but everyone has their limits. mostly there is no one who wants to hear every freakin' detail of what aggravates you and the downfalls of the treatment, so I write poems about how I feel and that helps. I try not to abuse my friends and family with complaints. it isn't their job to carry me and they won't anyway, they can't. it's my journey.
well, I have certainly rambled a lot here. if this helps just one person, I feel the treatment will have all been worth it. I found a great friend on Janis & Friends who was so compassionate he made me cry. the websites are invaluable. Great resources and always someone to listen.
My Hepatitis C Story
I am a 55 year old female. I had recently moved and went to get hooked up with a new family doctor. As part of his blood panel he ordered liver enzymes and mine were elevated. ALT was in the 90's. 6 months later he checked again and they were still elevated even more. ALT at 190. HE did the screening test for Hep C and I had it. I have never had any symptoms.
It was of course quite a shock.
I was diagnosed 2/10. Biopsied 3/10- stage 0 to 1, grade 3 . I had been a frequent wine drinker. My doctor thinks I have been infected for a long time but had little progression.
I began treatment 5/10 at a local teaching hospital with a hepatology department.
Before deciding to treat, I had all the concerns everyone has. Will the meds do lasting damage? How bad will the side effects be? Can I still work?
I made it a point to learn all I could. I researched based on my personal odds of clearing the virus and decided to treat now as I have great medical coverage and want to retire soon.
I am genotype 3a so I treated for 6 months. Used Pegasus and RIbiviran 1000 mg ( at my request as this was weight based and the research I have read indicated this would give me the best odds to clear the virus)
I had minimal side effects during treatment. Anemia and fatigue were the most notable. Procrit was used to deal with the anemia. I did not takes any meds for anxiety or depression. I never experienced any of the psychological issues associated with the treatment meds. Most other side effects were annoyances. I just didn't like that the meds made me feel edgy and hyper. I missed only 2 days of work in the 6 months.
So far my treatment appears to be successful. During treatment the virus was undetectable at week 4 so I had rapid viral response and it has remain undetected. I was still clear on my 3 month post treatment tests.
I would do it again if I had to.
It was of course quite a shock.
I was diagnosed 2/10. Biopsied 3/10- stage 0 to 1, grade 3 . I had been a frequent wine drinker. My doctor thinks I have been infected for a long time but had little progression.
I began treatment 5/10 at a local teaching hospital with a hepatology department.
Before deciding to treat, I had all the concerns everyone has. Will the meds do lasting damage? How bad will the side effects be? Can I still work?
I made it a point to learn all I could. I researched based on my personal odds of clearing the virus and decided to treat now as I have great medical coverage and want to retire soon.
I am genotype 3a so I treated for 6 months. Used Pegasus and RIbiviran 1000 mg ( at my request as this was weight based and the research I have read indicated this would give me the best odds to clear the virus)
I had minimal side effects during treatment. Anemia and fatigue were the most notable. Procrit was used to deal with the anemia. I did not takes any meds for anxiety or depression. I never experienced any of the psychological issues associated with the treatment meds. Most other side effects were annoyances. I just didn't like that the meds made me feel edgy and hyper. I missed only 2 days of work in the 6 months.
So far my treatment appears to be successful. During treatment the virus was undetectable at week 4 so I had rapid viral response and it has remain undetected. I was still clear on my 3 month post treatment tests.
I would do it again if I had to.
Sunday, March 14, 2010
A soul search in the mountains
Forget all the what-abouts, the medical field has left me having to be a human lab rat. Loving all animals, now I know what my four legged brother and sisters go through. Ha!
Being raised a teenager in the late 1960's and early 1970's by a totally dysfunctional step-father and mother who were either always in Europe with my step-sister or telling me to go to my room or outside, put my young mind in motion to the acceptance of always being alone, never having attention from the woman who's womb I climbed out of and building my self-confidence, standards and morals on actions I thought, at that time, to be good. At 16 years old my parents took me to court and had me emancipated because they got tired of me running away from home and not knowing how to live a family life. Sleeping in gas station bathrooms, the woods and under bridge over-passes did not assist my growth as a young woman, so yes, I grabbed a hold of what ever lifestyle and whom ever would put a roof over my head and food in my mouth and at the least, pretend they cared about me. After many surgeries which lead to a full hysterectomy, a few tasteful tattoos and walking down the same path as many of the 1969 Woodstock, NY goers, I am now nearly 53, sick with the flue nearly every day and just sitting back waiting for my next pancreas and/or gallbladder flare up which will send me to the hospital where patients with out funds are treated by students and like lab rats.
The only things I've learned to understand and forgive in my search for the "how I got HepC" answer and my this trip back in time, is forgiveness to myself for things I've done in the past that were questionable and the fact that my mother was raised in the great depression, she was left with my grandfather and her younger sister when she was ten as they carried her mother to a hospital for 25 years from hearing and seeing things.
2010 the medical field says, is still saying, you can get HepC from A,B,C, D or E. Considering I had cysts removed from my ovaries at 17 years old and the Doc could have had HepC and pricked his finger during surgery putting his infected blood in me, you-tell-me.
October 2004 is when I was tested for HepC. While dating a fellow who needed a blood transfusion after an auto accident in the 1970's and contracted HepC through the blood the hospital put through his veins, his Doctor suggested I be tested for HepC. The suggestion for testing was not advised due to the mere 2% risk of contracting HepC through sex, but from the fact that 1/3 of the world is running around with HepC and do not know it. I believe they aren't aware of it NOT because it doesn't manifest itself but because the medical field HAS NOT cautioned the public to be aware of and pay attention to the very obvious signs/illness brought out by HepC i.e. abdominal pain, fatigue, monthly and possibly daily flue like sickness' and the break down of organs located around the liver due to the liver not functioning properly from HepC, to name a few, and last but not least the mental anguish and dysfunction many of us allow ourselves to go through carrying the burden of knowing we have a virus which can be transmitted to others and knowing there is no cure, we will die from HepC destroying our other organs and/or liver.
My HepC story? The aforementioned is my HepC story.
walk in peace
brenda in the appalacia's of Virginia
tsalagi
tsadanadogi alisgisgi
Being raised a teenager in the late 1960's and early 1970's by a totally dysfunctional step-father and mother who were either always in Europe with my step-sister or telling me to go to my room or outside, put my young mind in motion to the acceptance of always being alone, never having attention from the woman who's womb I climbed out of and building my self-confidence, standards and morals on actions I thought, at that time, to be good. At 16 years old my parents took me to court and had me emancipated because they got tired of me running away from home and not knowing how to live a family life. Sleeping in gas station bathrooms, the woods and under bridge over-passes did not assist my growth as a young woman, so yes, I grabbed a hold of what ever lifestyle and whom ever would put a roof over my head and food in my mouth and at the least, pretend they cared about me. After many surgeries which lead to a full hysterectomy, a few tasteful tattoos and walking down the same path as many of the 1969 Woodstock, NY goers, I am now nearly 53, sick with the flue nearly every day and just sitting back waiting for my next pancreas and/or gallbladder flare up which will send me to the hospital where patients with out funds are treated by students and like lab rats.
The only things I've learned to understand and forgive in my search for the "how I got HepC" answer and my this trip back in time, is forgiveness to myself for things I've done in the past that were questionable and the fact that my mother was raised in the great depression, she was left with my grandfather and her younger sister when she was ten as they carried her mother to a hospital for 25 years from hearing and seeing things.
2010 the medical field says, is still saying, you can get HepC from A,B,C, D or E. Considering I had cysts removed from my ovaries at 17 years old and the Doc could have had HepC and pricked his finger during surgery putting his infected blood in me, you-tell-me.
October 2004 is when I was tested for HepC. While dating a fellow who needed a blood transfusion after an auto accident in the 1970's and contracted HepC through the blood the hospital put through his veins, his Doctor suggested I be tested for HepC. The suggestion for testing was not advised due to the mere 2% risk of contracting HepC through sex, but from the fact that 1/3 of the world is running around with HepC and do not know it. I believe they aren't aware of it NOT because it doesn't manifest itself but because the medical field HAS NOT cautioned the public to be aware of and pay attention to the very obvious signs/illness brought out by HepC i.e. abdominal pain, fatigue, monthly and possibly daily flue like sickness' and the break down of organs located around the liver due to the liver not functioning properly from HepC, to name a few, and last but not least the mental anguish and dysfunction many of us allow ourselves to go through carrying the burden of knowing we have a virus which can be transmitted to others and knowing there is no cure, we will die from HepC destroying our other organs and/or liver.
My HepC story? The aforementioned is my HepC story.
walk in peace
brenda in the appalacia's of Virginia
tsalagi
tsadanadogi alisgisgi
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