No news is good news when the news is that there is no increase in scarring of the liver, and no danger signals in extensive lab tests done this March.
Be Happy
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Watercolor by Renee Locks, from Brush Dance
Showing posts with label Hep C. Show all posts
Showing posts with label Hep C. Show all posts
Friday, April 15, 2016
Friday, April 15, 2011
Walking in May
I'm excited and hopeful about taking part in the 1.5K Liver Life Walk on May 14th in the San Diego Zoo. It raises money for the American Liver Foundation for research and lobbying for prevention and treatment of liver diseases. My experience with Hepatitis C motivates me.
Walking around the neighborhood park prepares me for the official Walk. I also walk for errands most of the time, hailing a bus only when very tired or heavy laden.
Maybe next year I can try the 5K Walk.
These New Balance and Timberland shoes are made for walking!
Walking around the neighborhood park prepares me for the official Walk. I also walk for errands most of the time, hailing a bus only when very tired or heavy laden.
Maybe next year I can try the 5K Walk.
These New Balance and Timberland shoes are made for walking!
Monday, May 31, 2010
Meetup in San Diego
On Saturday several members of the online forum, Hep C Nomads, gathered in Balboa Park, near the fountain and the science museum. For the first time, we met face to face. We seemed already to be old friends. Two were still taking the ribivarin/interferon treatment, so travelling to the meetup was really tiring. We talked and talked, sitting under a patio umbrella. The wife of one of the patients joined in with gusto.
It's been a privilege, which I hope will be repeated more and more often in the future, locally and regionally. The only support groups I have found were all part of hospital or other programs, and were intended for their own patients or clients. Concerned people simply have to start their own, and use the phone or email.
It's been a privilege, which I hope will be repeated more and more often in the future, locally and regionally. The only support groups I have found were all part of hospital or other programs, and were intended for their own patients or clients. Concerned people simply have to start their own, and use the phone or email.
Friday, May 7, 2010
Talking About Hep C
Recently I've had two opportunities to share my experience in treatment with others who have Hepatitis C, or are considering being tested for it.
At a focus group for Family Health Centers, people had many questions about treatment. I felt really good about being able to respond, and to offer encouragement.
My first experience as a volunteer on a team from American Liver Foundation was at San Diego Rescue Mission's detox center. Again, I described my own experience, responded to questions, and encouraged people to find out their status. I advocate getting treatment early. If I had gotten earlier treatment, I would not now have liver damage.
Kristin Luton, the Programs Manager at the local branch of American Liver Foundation, gave an excellent illustrated talk on the liver in general and on the hepatitis viruses in particular. I look forward to sharing many liver health education sessions in future.
At a focus group for Family Health Centers, people had many questions about treatment. I felt really good about being able to respond, and to offer encouragement.
My first experience as a volunteer on a team from American Liver Foundation was at San Diego Rescue Mission's detox center. Again, I described my own experience, responded to questions, and encouraged people to find out their status. I advocate getting treatment early. If I had gotten earlier treatment, I would not now have liver damage.
Kristin Luton, the Programs Manager at the local branch of American Liver Foundation, gave an excellent illustrated talk on the liver in general and on the hepatitis viruses in particular. I look forward to sharing many liver health education sessions in future.
Sunday, February 28, 2010
Preparing to Speak
I'm writing up a narrative of my experience with Hep C, as a basis for speaking about HepC and the need for diagnosis and treatment. I'll meet with a rep of American Liver Foundation this week. Three people would go as a team to community centers, rehab programs, prisons.
Thursday, September 10, 2009
Keystone Kops
On a Hep C forum, someone asked a question about how important viral load numbers are. She had been told her numbers were too low for treatment. This matters because people have better chances for success in treatment if it is initiated early. The longer one waits, the more the liver is damaged. There is in fact no reason to base treatment on the numbers. That answer, and some of the process I describe below, makes me think of the old Keystone Kops, who ran around, got in each other's way, and made efforts which no rational person could have expected to be effective.
My diagnosis came in 1997, when I gave blood. The viral load test wasn't done until 2002, when I told a physician assistant, who was doing my physical, that I wasn't sure I had Hepatitis C, I might just have antibodies. I told her I thought the viral load test was never done because it was expensive, but also that since it wasn't done, I thought my physicians didn't think I had an active case. She ordered the test immediately. After that I was referred to the health plan's GI department. The doc there said I had live virus. She refused to tell me the reading on the grounds that people obsess over the numbers. She also told me more than once that treatment was reserved as a last ditch effort to keep people alive when they were waiting for a transplant. Years later the department was reorganized. I finally got treatment starting October 2008 and stopped June 2009 with no detectable virus. I have come to terms with my dismay over finding that in the time between 2002 and 2007, I had developed Stage 1 cirrhosis, and that many people in different parts of the country had been treated years before I was, as soon as HCV was diagnosed. Whether a person is treated for HCV depends on where they live and who is on their medical care team, not on their viral load or how sick they are.
My diagnosis came in 1997, when I gave blood. The viral load test wasn't done until 2002, when I told a physician assistant, who was doing my physical, that I wasn't sure I had Hepatitis C, I might just have antibodies. I told her I thought the viral load test was never done because it was expensive, but also that since it wasn't done, I thought my physicians didn't think I had an active case. She ordered the test immediately. After that I was referred to the health plan's GI department. The doc there said I had live virus. She refused to tell me the reading on the grounds that people obsess over the numbers. She also told me more than once that treatment was reserved as a last ditch effort to keep people alive when they were waiting for a transplant. Years later the department was reorganized. I finally got treatment starting October 2008 and stopped June 2009 with no detectable virus. I have come to terms with my dismay over finding that in the time between 2002 and 2007, I had developed Stage 1 cirrhosis, and that many people in different parts of the country had been treated years before I was, as soon as HCV was diagnosed. Whether a person is treated for HCV depends on where they live and who is on their medical care team, not on their viral load or how sick they are.
Wednesday, December 3, 2008
It's Working!
It's working! The treatment is working. The viral load is the number of Hep C viruses in a given sample of blood. It's way, way down.
While this is not a guarantee of cure, it is very good news indeed.
While this is not a guarantee of cure, it is very good news indeed.
Monday, October 20, 2008
Saturday, October 4, 2008
Proactive Waiting
Next week I'm due to have blood work to see if my blood is red enough for the challenge of treatment. I read that people's bodies produce interferon naturally; it's part of the immune system's ability to stave off virus infection. Hepatitis C virus camouflages itself so well that killer T-cells don't recognize the virus as a noxious invader. Taking ribivarin with the interferon enables the T-cells to recognize and attack the virus.
Reading blogs affects me positively when the person is still free of C after treatment. I get somber when I read that someone relapsed, or had two or three courses of treatment before it worked. Sometimes treatment doesn't work. Some of the bloggers took part in experimental trials. Today some receive interferon by intravenous drip three times a week. Others have regimens with varying mixtures of medicines.
At the orientation in September, the nurse related some history of treatment. Huge amounts of interferon were formerly given. That's not necessary, now that they know ribivarin is needed to catalyze the immune system's work. She told us the drug company charges $3600 a month for the interferon shots. We pay whatever copay is required for brand name medicines by our membership plans. The ribivarin will be generic, lower cost and lower copay.
Postponing treatment was frustrating and bewildering. I was all set for it. Friends and relations geared up to be supportive. Now I'm in limbo. Still, since I was willing to cope with dreaded side effects, I thought I should make greater efforts to improve my health and organize my home. So that's what's proactive about waiting.
Reading blogs affects me positively when the person is still free of C after treatment. I get somber when I read that someone relapsed, or had two or three courses of treatment before it worked. Sometimes treatment doesn't work. Some of the bloggers took part in experimental trials. Today some receive interferon by intravenous drip three times a week. Others have regimens with varying mixtures of medicines.
At the orientation in September, the nurse related some history of treatment. Huge amounts of interferon were formerly given. That's not necessary, now that they know ribivarin is needed to catalyze the immune system's work. She told us the drug company charges $3600 a month for the interferon shots. We pay whatever copay is required for brand name medicines by our membership plans. The ribivarin will be generic, lower cost and lower copay.
Postponing treatment was frustrating and bewildering. I was all set for it. Friends and relations geared up to be supportive. Now I'm in limbo. Still, since I was willing to cope with dreaded side effects, I thought I should make greater efforts to improve my health and organize my home. So that's what's proactive about waiting.
Friday, August 29, 2008
Stigma
I was first told (1997) that I had Hepatitis C at a blood bank. When I returned to give blood again, the person at the desk gave me a scared look. I was sent to a small room with a doctor, who apparently assumed I was a drug user. He warned me not to give blood, which was fine, but also not to kiss, not to have sex, not to use the same dishes as others even though they were washed, at home or in a restaurant. All these warnings proved to be unwarranted, but at the time I emerged from the encounter feeling like Typhoid Mary. I was devastated and diminished.
As time has passed, public information on Hepatitis C always gives the main source of new cases as shared needles. The assumption is that the needles are shared by addicts. The only needles I've ever had were administered in medical offices, so if the needles are the source, it would have to be improperly sterilized needles or reused disposable needles. Reused needles are a source of polio and other diseases.
Medical personnel have acquired diseases from accidental needle sticks while doing their jobs.
For a long time it was believed not to be transmissable by sexual activity, since so many partners of people with Hep C did not have the virus. Now the list of possibilities does include sexual activity, especially if there have been many partners. Any breaks in the skin could allow blood from one partner to enter the bloodstream of another.
By this logic, boxing should be listed as a source of Hepatitis C infection. Don't sit in the front row!
Transfusions spread the virus freely before 1992, when tests were finally developed that could detect the virus. Since then, the public is often assured that the blood supply is now free of that virus. I received transfusions in the 1960's, long before awareness of this virus. It's probable, but not provable, that I was infected then.
Hepatitis C virus often lurks for 20 years before becoming aggressive and causing symptoms. That means inflammation of the liver due to pre-1992 transfusions could show up for years to come.
The public is told that most people with Hepatitis C don't know they have it. So why don't doctors/labs test for it?
Stigma attached to this illness may help people deny it could happen to them. Thus it tends to inhibit people from trying to find out.
As time has passed, public information on Hepatitis C always gives the main source of new cases as shared needles. The assumption is that the needles are shared by addicts. The only needles I've ever had were administered in medical offices, so if the needles are the source, it would have to be improperly sterilized needles or reused disposable needles. Reused needles are a source of polio and other diseases.
Medical personnel have acquired diseases from accidental needle sticks while doing their jobs.
For a long time it was believed not to be transmissable by sexual activity, since so many partners of people with Hep C did not have the virus. Now the list of possibilities does include sexual activity, especially if there have been many partners. Any breaks in the skin could allow blood from one partner to enter the bloodstream of another.
By this logic, boxing should be listed as a source of Hepatitis C infection. Don't sit in the front row!
Transfusions spread the virus freely before 1992, when tests were finally developed that could detect the virus. Since then, the public is often assured that the blood supply is now free of that virus. I received transfusions in the 1960's, long before awareness of this virus. It's probable, but not provable, that I was infected then.
Hepatitis C virus often lurks for 20 years before becoming aggressive and causing symptoms. That means inflammation of the liver due to pre-1992 transfusions could show up for years to come.
The public is told that most people with Hepatitis C don't know they have it. So why don't doctors/labs test for it?
Stigma attached to this illness may help people deny it could happen to them. Thus it tends to inhibit people from trying to find out.
Thursday, August 21, 2008
Hep C Bloggers
Yesterday I was glad to find, through Google, several bloggers who share their courses of treatment for Hepatitis C. This was very encouraging for me. Several blog names were variations of Hep C Journey or Hep C Journal. More showed up in Links sections of the blogs. I've looked at two and sent comments. I'm reluctant to publish some things for all the world to see; still, the details I've read give me good information and a sense of not being alone. Other people have been there, too. If my story can offer that to others, it may be worth while to share it candidly.
Monday, August 18, 2008
Countdown to Treatment
On September 16th I plan to start treatment with PEG-Intron (Interferon)and ribivarin at Kaiser Permanente. I'm scared and elated. People have reacted to these chemicals with flu-like symptoms, anywhere from mild to severe. Many endure this on the weekends, then go to work on Monday. The treatments last 48 weeks, with a weekly shot of interferon and daily tablet of ribivarin. Blood tests every two weeks will show whether the amount of virus is being reduced. If there isn't much effect by three months, the treatment will be stopped. Of those who complete the 48 weeks of treatment, 50% can be expected to be clear of virus and stay clear at least six months.
Several people have told me they took the same treatment and have been clear of the Hep C virus, one for four years, another for eight years. They've encouraged me to try.
It may not work, but I'll take the 50-50 odds gladly.
Several people have told me they took the same treatment and have been clear of the Hep C virus, one for four years, another for eight years. They've encouraged me to try.
It may not work, but I'll take the 50-50 odds gladly.
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