Hepatitis C: Living Through Treatment Together
As a couple, Hope and Dennis have shared many years together. In 2002, their relationship was put to the test when they were both diagnosed with hepatitis C. Together they learned about the disease and together they went through treatment. I met Hope through the hepatitis forums, which can be great sources of support for people living with hepatitis. In this interview we conducted through email, they share their experiences with the ups and downs of living with hepatitis C. As you'll see, Hope has some strong feelings about treatment, but she thinks it's really important for people to know how tough it can be.
When did you begin thinking something was wrong?
We didn't really know anything was wrong with us. About 10 years before finding out we both had hepatitis C, we began taking naps because we got tired halfway through the day. As time went on, the naps got longer and more frequent. I remember feeling depressed and anxious, and having aches and pains. Never did my doctor put it all together, other than comment that I was always sick. Dennis was very tired, but not much else.
When did you know you both had hepatitis C?
Dennis is a disabled Vietnam veteran and has post-traumatic stress syndrome. In 2002, the Department of Veterans Affairs started testing all veterans for hepatitis C virus and Dennis tested positive. Then they tested me. I remember getting a letter from the clinic about my lab result and someone told me on the phone that I had hepatitis C but not to worry about it. She told me hepatitis C was just a virus like a cold and I didn’t need to do anything. I knew very little about hepatitis, other than an old friend had been treated and nearly died. I remember being very shocked and scared because it was same week that Newsweek came out with a front page article about hepatitis C. It seemed that whatever we read said hepatitis was a death sentence.
We both made appointments at the clinic, but we were told we couldn't start treatment for one year because we drank alcohol. We didn't drink excessively, but we had to be sober for a whole year. During the time we were waiting, I started using a computer and visiting websites and forums. Every site I visited pushed treatment or die. By this time, I knew what hepatitis was and was scared to death we were dying. I remember crying a lot and being very depressed because I thought we had to go through treatment or die. It was nerve-wracking.
Did you ever find out how you were infected?
We're not really sure how we contracted it. Dennis continues to take the blame for it because in Nam he sometimes was exposed to blood, and he did use drugs and get tattoos. I have no idea how I got it from him, if I even did. In my life, I've had plenty of surgeries and blood transfusions, but none of that makes any difference.
Tell us about some of your treatment experiences.
We started treatment in February 2003 and it was hell from the first day. We had to call the Pegylated Interferon hotline in the middle of the night because Dennis had fever and chills much like he had with malaria which he had before. Along with that, he had a massive headache and it continued through treatment for the full 48 weeks without any relief. We both had a low-grade temperature the entire year. We spent day in and day out suffering terribly. We live where it's warm, but even through the summer, we were freezing most of the time. We slept with an electric blanket, but the cold just seemed to penetrate our bones.
We both suffered from constipation and diarrhea, and right from day one, we had back pains and joint pains that were terrible and nothing like the flu. The brain fog was like permanent disorientation. We actually got lost when we left the house and had to go out together so we could help one another remember where we were going and how to get back.
I lost most of my hair. It was so thin. Before we started treatment, I had 16 inches cut off and donated it to wigs for kids. By the time I was done, I was nearly bald. It thinned but didn't fall out in patches like it did for friends on chemotherapy.
How did you explain all this to your friends?
I felt it was no big deal to tell our friends. I knew it wasn't easily transmitted so I didn’t keep it a secret that we both had hepatitis C. Big mistake. All the friends we had avoided us like we had the plague. Now the only friends we have are other "heppers." And that goes for most of our family as well. So we are pretty much isolated with no one left in our lives but our daughter, her husband, his parents and the two grandchildren. I used to have the house constantly full of company. We had huge parties, 20 people over for Thanksgiving, open house with 50 or more people coming by on Christmas Eve. No more of that. And honestly, we couldn't do that kind of entertaining anyway because we're way to tired and in too much pain. It did hurt a lot that when we were both too sick to even stand up, none of our friends would help us out. When we finished and they thought the hepatitis was gone, some called but I was angry and didn’t accept them back into our lives.
What were some of the toughest times?
It wasn’t easy getting used to giving one another shots. Then remembering to take pills on schedule got hard to do. We were told they had to be taken exactly 12 hours apart. And add the brain fog along with a zillion other medications, I finally bought a PalmPilot that I programmed to beep when it was time for meds. It beeped around the clock and Dennis swore he would break it with a hammer when we were done.
How was your appetite during treatment?
Dennis was able to drink supplements daily and drink water. I found I couldn't keep anything down, sometimes not even water. Every morning I would eat half of an oatmeal raisin cookie, vomit and then take my medication. If I took the medication first, I would vomit them, too. There were days on end when neither one of us could get out of bed. Our diet was so poor because we couldn't shop much, nothing stayed down when we ate, or if we ate and it did stay down, it wasn’t very nutritious. During the last few months of treatment, I was malnourished and had hyponatremia from drinking only water and not being able to keep food down. I finally forced myself to drink juices and eat pudding.
One of the tough parts of chronic hepatitis is fatigue. Was getting to sleep easy or hard?
I was so weak while treating that I fell a few times and injured myself. For the first 2 months, I was buzzing along, unable to sleep and would just lay there. The VA psychiatrist gave me several different medicines, but none of them worked. I finally went to my local primary physician and got onto Ambien and slept. Eventually we spent so much time napping, half of the time we didn’t know the date or time. I know I was pretty much running on empty and had no clue how we were surviving. Just taking a shower was enough hard work to make me tired enough to lay down and nap.
Did you ever think about quitting treatment?
About two months into treatment, was the first time we really considered quitting. After that, we pretty much discussed quitting daily. Every week we quit and each shot day came around and we would decide to do one more day, one more week. The sad part was as sick as we were, we didn’t really, seriously consider quitting as an real option. Oh, we threatened to quit but would never have done it.
You must have been so excited to finally finish!
As the last couple of weeks came up, we both caught the flu. The real flu. On top of treatment, it was about as rotten as anyone could possibly feel. Neither one of us did the last shot. We were just too sick.
What's your opinion about Riba Rage?
To me, "Riba Rage" is real and the stuff still grabs hold and we start arguing over nothing until I realize it and stop. Day after day we fought like animals. Screaming and yelling at one another over nothing. It was like having an itch you could not scratch. To say we were unhappy is an understatement. We were as miserable as we could be without being dead. At times we were so depressed we had to find reasons to live. Nasty poison to make us think like that.
It sounds like you have strong feelings about treatment.
I know some people need treatment. I just wish I was told about all the bad parts of treatment. As soon as the meds were done, I started to find little things that improved every day. Like my fingertips healing and my yeast infections clearing up. I was on about 60 pills a day and after treatment, I was able to eliminate two-thirds of them! So I recovered a little each day and seriously, for me, I feel like it was 3 years later when I finally felt the treatment was gone, but now I'm left to deal with all the problems it triggered.
If I knew what I do now, I never would have treated. I probably would have just never drank alcohol, kept exercising and eat a healthy diet. As it stands, exercise is almost impossible and all I can manage is a little Tai Chi now. I would never drink again anyway. And I do try to eat healthier. But none of it seems to make a difference. I am plagued with so many pain issues and illnesses and take way too many medications for my liking and feel like treatment ruined my life. Nothing is left of the old me.
So, how are you both now?
I think I've recovered more than Dennis. He has relapsed and it’s pretty obvious he is not well. He has had a FibroSURE test and now has stage 2-3 fibrosis where he had no damage before treatment. Dennis had three root canals during treatment and three more since. After treatment he has lost a few teeth and had gum surgery. The VA dentist told him it was all from treatment. Dennis also has to deal with gout and high ammonia levels. When his ammonia levels are up, he shows signs of dementia, often not knowing where he is or what he is doing.
Tell us about life after treatment for you and Dennis.
Well, it’s a lot of doctor appointments, lab tests, trial and error on medications and lots of waiting room time. Not a week goes by without at least three appointments for one thing or another and sometimes as many as six in one day. Nothing went back to “normal.” Nothing is the same. I don’t even feel like the same person and I find anger to be the predominant emotion I live with. Mostly, I am angry. We were not told of the possibility of 90% of the side effects we had and we weren't warned that treatment could trigger other genetic diseases we might develop later. I hate the deep depression and the anger and rage we live with. The only time we're happy are when the grandbabies are around.
Friday, April 30, 2010
A View into my Looking Glass.......Dottie's Story
Would you like to take a journey down my rabbit hole?
(had picture of Alice in wonderland here)
I imagine that at this time you’re wondering why the ''Alice in Wonderland' reference? Well let me begin by saying that my journey through finding out I had HCV dealing with the fact, treating and the final outcome started as something completely surreal, much like looking through a looking glass into my own life . There I was simply going through life, working, raising a family, bought a house and was doing everything the way that I thought I should. Like so many people in this world I woke one morning and something simply wasn't’ right. Was it symptoms of HCV, no, and that is the part that still to this day still scares the crap out of me. HCV can live and breed, growing and eating at your insides, your organs, chipping away at your life expectancy and you never once know it.
So there I was off to the hospital, my heart racing feeling really scared. Upon arrival at the hospital I was checked in the heart problem corrected for the time being and the array of tests began. A nurse came into my room and asked me “why do you have low blood platelets”? The only thing I could think to tell her was “I don’t know." I had absolutely no idea at the time what a blood platelet was. I was checked into the hospital, tests galore, I had a cardiologist, a hematologist, for the mysterious blood platelets and a gastroenterologist. Not one of these doctors could tell me what was going on. After having a liver scan in nuclear medicine the tech there was talking to me telling me my spleen was enlarged and my liver appeared to be cirrhotic.
I asked him what this would have to do with my heart and he said as far as he knew nothing. A week later I was discharged and told to meet with the gastro doctor in 3 days and the cardiac doc in a week. That there were several tests run and the results would be in soon. The cardiac doctor told me to cut out salt and caffeine and gave me a prescription to regulate my heartbeat; he attributed a lot of it to stress and being a woman. Oh the joys of being a woman....
The gastro doctor told me to quit drinking, DRINKING!!??
I told him I didn't’ drink; you know the occasional margarita a few times a year and a glass of wine here and there. The man looked at me like I was a liar. I didn't’ get it. The hematologist was talking about a bone marrow biopsy. I went home that day, filled with questions, no answers though. I went back to the hospital 2 days later and got copies of my records. As I read through what basically made no sense, there it was HCV positive!!!
My point to all the above,
WHY DO DOCTORS NOT RANDOMLY CHECK PEOPLE FOR HCV!!!
There are several ways that people can contract HCV, and honestly I could care less how anyone gets it as long as they do everything in their power to get rid of it. Personally, after talking with my doctor, the best explanation that he and I could come up with was that I got HCV from a blood transfusion. I was in a car accident when I was 12 and it was years before blood was tested. ( no old lady jokes ) It is neither here nor there where it comes from like I said, but this is my story so I put this part in.
When I read the news that I had HCV, I did like so many other people do. I thought I had been handed a death sentence. I freaked out!! I cried, I thought my days were numbered and I set out to find exactly what that number was. Would I live days, weeks, months or years?
I decided that the Internet had the answer to these questions. So I clicked on every link I could find and read. In the meantime I saw my doctor and told him I wanted to get rid of this ASAP!!! My med's were ordered and I was waiting for my insurance company to approve them. Why an insurance company had the right to approve or deny my treatment was and is a whole different story that I won’t even begin to get into now. It should be a gimme your sick there are med's here you go. But anyway….
I found my way to a forum that you could post questions to and you could also read other peoples questions and answers. This seemed like a wonderful place to me. People that actually got together to help one another. Let me tell you all, what may appear to be a blessing can be your worst nightmare.
Try to remember that a lot of these people are on treatment and we will get into some of the physical and mental side effects of these med's in a bit. But also remember that many of these people are completely insane and their only reasons for getting to know you are to gather personal information about you and to in one way or another take advantage of you or try to hurt you. All I am saying is BE CAREFUL of what you tell strangers. Their kind words are nothing more than candy in the cyber world and you know what mom told you about taking candy from strangers. Then finally I found my way to Delphi. This place is filled with good information, by all means though be careful here as well, same reasons as above.
OK, so I am at work when my box of med's arrives. My insurance company chose to use a drug supplier that mailed my med's to me, it was actually quite convenient. They came every 3 weeks in an unmarked box simply labeled refrigerate upon arrival. Many people believe that once they begin treatment that they should quit work and crawl into bed, I have to say I find this to be the absolute worst advice that anyone could take. Granted there will be times that you will want to crawl into a hole and die and other times that you just can't make it, take a day or two off, but keep your mind challenged and on other things besides feeling like crap.
In the long run it will keep you sane, or at least close to the level of sanity you started with. My treatment lasted 84 weeks, and I averaged about 2 days off a month. I do not have a job where I am working with dangerous equipment or in a field that peoples lives are in my hands. Had that been the case then my above advice might be a bit different. The job that I do have is managing an office, one of the highest volume insurance agencies in my area. So yes attention to detail was important.
Onto 'The Treatment' WOOOO HOOOO this is fun NOT!!
So the big night arrives, I have my arsenal of things at the ready that I was told I would need. I double checked everything, blankets, heating pad, some Tylenol PM and gave that up quick, a bucket to puke my brains into if the need arose, my shot and my riba. OK I was ready, I popped my pills hopped online and was ready, I admit the shot confused the hell out of me for a while. I had spent some time talking to my new online friends for a while about the “Big” night and I knew they would help me through any questions might have. I was told by numerous people that the first shot was the hardest.
So I was prepared for almost anything, I thought. Knowing that the effects of the shot would take a few hours to reach the worst of what I was about to endure, I decided that Friday nights would be the best time so that I had the weekends to get over the worst of the effects. I mixed the absinthe aka peg-interferon ( I know bad comparison but who ever said I was right in the head ) and poked myself in the thigh. There done, now I was left to wait…..
I sat in chat for a few hours and then the feverish feelings began to set in, they turned to a full body shake and… well…. I thought I was about to meet my maker. But alas, I was just fine. Yes I felt like crap for the next day I ached a bit and wound up in bed for the day. But I knew that was the worst and the rest should be OK. Right? I think not. Like everything else in this world there are good times and bad times.
Treatment was no walk in the park and the longer I was on it the weaker I felt. My blood counts bottomed out. My platelets were almost nonexistent. I wound up not only doing the maximum amount of interferon and riba but got to throw a bunch of yummy other drugs into the mix. Neupogen and Arenesp, Arenesp is basically a long lasting form of Procrit. On more than one occasion my doctor wanted to reduce my interferon due to my blood levels dropping so low. from the beginning my doctor and I had an understanding, I wanted to do this treatment once if at all possible and not waver on the dosages.
I had a personal belief that if my dosages were lowered or I was taken off treatment my system had the chance to build an immunity to the drugs and there was no way that I was going to chance that. Now you have to understand that this is just my belief and there is absolutely no medical research that even hints that I am right. My story my beliefs if you think I am insane you may be right but write your own story….
OK now that you now one of my theories time for another, the protocol for treatment is something like you are suppose to clear at week 12 and then continue treatment for an additional 36 weeks. Well folks, what if you don’t clear at 12 weeks? This bothered me A LOT.
I made an appointment with my doc to discuss this with him. I told him that I felt that no matter what week you cleared at, if you cleared in the first place, that I thought that the additional 36 weeks should begin then. He pretty much dismissed me at this point and said that he was the doctor and would decide what was best for me…. Blah blah blah….. yay you’re the doctor, we were talking about my body not his. So the pcr’s began… my counts were coming down but I was not clear. Not at week 12, 24, 36, but alas at week 48 I cleared.so doctor know it all said do you really want to go an additional 36 weeks from now? My answer to him was a clear and direct YES.
At this time, he now had to apply with my insurance company again for extended treatment. He could show that the med's were working just at a slower pace that optimal. He sent me home with 2 more shots that he had as samples and another bottle of that wonderful riba…. Insurance approved and I was set for my additional 36 weeks.
Be right back I need another cup of tea to finish this……
OK I’m back, hmmm how was I feeling at this point? Like road kill!! Seriously, my hair was dead, I chopped it all off, the only way I could sleep was with the aid of Ambien, the pain in my bones and joints was so bad I was eating Vicodin like candy to function. But dammit I was not going to let this stupid HCV beat me. I had 2 platelet transplants because they dropped as low as 10k and the average number of platelets in a persons body is suppose to be around 250k. the closer I got to the end of my treatment the less and less I wanted to take those friggin shots. I hated them all of them. The neupogen and arenesp burned like hell, made me hurt like you wouldn’t believe.,But I still had my friends on Delphi.
I made chat each and every weekend to laugh and carry on. This was my escape from the pain the misery. I met several wonderful people and several real snakes in the grass.
I can honestly tell you that the group of people that I met and know from this chat room and forum were the absolute best!!! Bette our legendary forum host here has become not just a friend to me but she will forever be family in my heart of hearts. There were nights that I was ready to give in and just simply quit treatment.. I would call her and be all whiney. She would offer me some cheese to go with it and tell me suck it up take your damn shot!!! There were other times I called her weak and just feeling defeated, and she would listen and comfort me. I am truly blessed to have her in my life.
So I guess this about it, I am still clear, 2 years YAY ME!!!!
Time will tell what our fate will bring, but if my story brings you nothing else. Remember its your life, live it!! It is short and make it last as long as you can for never know what wonderful people will enter your life and forever change you. Treatment sux but if it works you have extended your life. I melt inside every time I look into my daughters eyes and know that because I sucked it up and made 2 years of her life a little harder by watching mom fall apart.. I have quite probably added 20 years to our time on this planet. Be well all
Dottie
(had picture of Alice in wonderland here)
I imagine that at this time you’re wondering why the ''Alice in Wonderland' reference? Well let me begin by saying that my journey through finding out I had HCV dealing with the fact, treating and the final outcome started as something completely surreal, much like looking through a looking glass into my own life . There I was simply going through life, working, raising a family, bought a house and was doing everything the way that I thought I should. Like so many people in this world I woke one morning and something simply wasn't’ right. Was it symptoms of HCV, no, and that is the part that still to this day still scares the crap out of me. HCV can live and breed, growing and eating at your insides, your organs, chipping away at your life expectancy and you never once know it.
So there I was off to the hospital, my heart racing feeling really scared. Upon arrival at the hospital I was checked in the heart problem corrected for the time being and the array of tests began. A nurse came into my room and asked me “why do you have low blood platelets”? The only thing I could think to tell her was “I don’t know." I had absolutely no idea at the time what a blood platelet was. I was checked into the hospital, tests galore, I had a cardiologist, a hematologist, for the mysterious blood platelets and a gastroenterologist. Not one of these doctors could tell me what was going on. After having a liver scan in nuclear medicine the tech there was talking to me telling me my spleen was enlarged and my liver appeared to be cirrhotic.
I asked him what this would have to do with my heart and he said as far as he knew nothing. A week later I was discharged and told to meet with the gastro doctor in 3 days and the cardiac doc in a week. That there were several tests run and the results would be in soon. The cardiac doctor told me to cut out salt and caffeine and gave me a prescription to regulate my heartbeat; he attributed a lot of it to stress and being a woman. Oh the joys of being a woman....
The gastro doctor told me to quit drinking, DRINKING!!??
I told him I didn't’ drink; you know the occasional margarita a few times a year and a glass of wine here and there. The man looked at me like I was a liar. I didn't’ get it. The hematologist was talking about a bone marrow biopsy. I went home that day, filled with questions, no answers though. I went back to the hospital 2 days later and got copies of my records. As I read through what basically made no sense, there it was HCV positive!!!
My point to all the above,
WHY DO DOCTORS NOT RANDOMLY CHECK PEOPLE FOR HCV!!!
There are several ways that people can contract HCV, and honestly I could care less how anyone gets it as long as they do everything in their power to get rid of it. Personally, after talking with my doctor, the best explanation that he and I could come up with was that I got HCV from a blood transfusion. I was in a car accident when I was 12 and it was years before blood was tested. ( no old lady jokes ) It is neither here nor there where it comes from like I said, but this is my story so I put this part in.
When I read the news that I had HCV, I did like so many other people do. I thought I had been handed a death sentence. I freaked out!! I cried, I thought my days were numbered and I set out to find exactly what that number was. Would I live days, weeks, months or years?
I decided that the Internet had the answer to these questions. So I clicked on every link I could find and read. In the meantime I saw my doctor and told him I wanted to get rid of this ASAP!!! My med's were ordered and I was waiting for my insurance company to approve them. Why an insurance company had the right to approve or deny my treatment was and is a whole different story that I won’t even begin to get into now. It should be a gimme your sick there are med's here you go. But anyway….
I found my way to a forum that you could post questions to and you could also read other peoples questions and answers. This seemed like a wonderful place to me. People that actually got together to help one another. Let me tell you all, what may appear to be a blessing can be your worst nightmare.
Try to remember that a lot of these people are on treatment and we will get into some of the physical and mental side effects of these med's in a bit. But also remember that many of these people are completely insane and their only reasons for getting to know you are to gather personal information about you and to in one way or another take advantage of you or try to hurt you. All I am saying is BE CAREFUL of what you tell strangers. Their kind words are nothing more than candy in the cyber world and you know what mom told you about taking candy from strangers. Then finally I found my way to Delphi. This place is filled with good information, by all means though be careful here as well, same reasons as above.
OK, so I am at work when my box of med's arrives. My insurance company chose to use a drug supplier that mailed my med's to me, it was actually quite convenient. They came every 3 weeks in an unmarked box simply labeled refrigerate upon arrival. Many people believe that once they begin treatment that they should quit work and crawl into bed, I have to say I find this to be the absolute worst advice that anyone could take. Granted there will be times that you will want to crawl into a hole and die and other times that you just can't make it, take a day or two off, but keep your mind challenged and on other things besides feeling like crap.
In the long run it will keep you sane, or at least close to the level of sanity you started with. My treatment lasted 84 weeks, and I averaged about 2 days off a month. I do not have a job where I am working with dangerous equipment or in a field that peoples lives are in my hands. Had that been the case then my above advice might be a bit different. The job that I do have is managing an office, one of the highest volume insurance agencies in my area. So yes attention to detail was important.
Onto 'The Treatment' WOOOO HOOOO this is fun NOT!!
So the big night arrives, I have my arsenal of things at the ready that I was told I would need. I double checked everything, blankets, heating pad, some Tylenol PM and gave that up quick, a bucket to puke my brains into if the need arose, my shot and my riba. OK I was ready, I popped my pills hopped online and was ready, I admit the shot confused the hell out of me for a while. I had spent some time talking to my new online friends for a while about the “Big” night and I knew they would help me through any questions might have. I was told by numerous people that the first shot was the hardest.
So I was prepared for almost anything, I thought. Knowing that the effects of the shot would take a few hours to reach the worst of what I was about to endure, I decided that Friday nights would be the best time so that I had the weekends to get over the worst of the effects. I mixed the absinthe aka peg-interferon ( I know bad comparison but who ever said I was right in the head ) and poked myself in the thigh. There done, now I was left to wait…..
I sat in chat for a few hours and then the feverish feelings began to set in, they turned to a full body shake and… well…. I thought I was about to meet my maker. But alas, I was just fine. Yes I felt like crap for the next day I ached a bit and wound up in bed for the day. But I knew that was the worst and the rest should be OK. Right? I think not. Like everything else in this world there are good times and bad times.
Treatment was no walk in the park and the longer I was on it the weaker I felt. My blood counts bottomed out. My platelets were almost nonexistent. I wound up not only doing the maximum amount of interferon and riba but got to throw a bunch of yummy other drugs into the mix. Neupogen and Arenesp, Arenesp is basically a long lasting form of Procrit. On more than one occasion my doctor wanted to reduce my interferon due to my blood levels dropping so low. from the beginning my doctor and I had an understanding, I wanted to do this treatment once if at all possible and not waver on the dosages.
I had a personal belief that if my dosages were lowered or I was taken off treatment my system had the chance to build an immunity to the drugs and there was no way that I was going to chance that. Now you have to understand that this is just my belief and there is absolutely no medical research that even hints that I am right. My story my beliefs if you think I am insane you may be right but write your own story….
OK now that you now one of my theories time for another, the protocol for treatment is something like you are suppose to clear at week 12 and then continue treatment for an additional 36 weeks. Well folks, what if you don’t clear at 12 weeks? This bothered me A LOT.
I made an appointment with my doc to discuss this with him. I told him that I felt that no matter what week you cleared at, if you cleared in the first place, that I thought that the additional 36 weeks should begin then. He pretty much dismissed me at this point and said that he was the doctor and would decide what was best for me…. Blah blah blah….. yay you’re the doctor, we were talking about my body not his. So the pcr’s began… my counts were coming down but I was not clear. Not at week 12, 24, 36, but alas at week 48 I cleared.
At this time, he now had to apply with my insurance company again for extended treatment. He could show that the med's were working just at a slower pace that optimal. He sent me home with 2 more shots that he had as samples and another bottle of that wonderful riba…. Insurance approved and I was set for my additional 36 weeks.
Be right back I need another cup of tea to finish this……
OK I’m back, hmmm how was I feeling at this point? Like road kill!! Seriously, my hair was dead, I chopped it all off, the only way I could sleep was with the aid of Ambien, the pain in my bones and joints was so bad I was eating Vicodin like candy to function. But dammit I was not going to let this stupid HCV beat me. I had 2 platelet transplants because they dropped as low as 10k and the average number of platelets in a persons body is suppose to be around 250k. the closer I got to the end of my treatment the less and less I wanted to take those friggin shots. I hated them all of them. The neupogen and arenesp burned like hell, made me hurt like you wouldn’t believe.,But I still had my friends on Delphi.
I made chat each and every weekend to laugh and carry on. This was my escape from the pain the misery. I met several wonderful people and several real snakes in the grass.
I can honestly tell you that the group of people that I met and know from this chat room and forum were the absolute best!!! Bette our legendary forum host here has become not just a friend to me but she will forever be family in my heart of hearts. There were nights that I was ready to give in and just simply quit treatment.. I would call her and be all whiney. She would offer me some cheese to go with it and tell me suck it up take your damn shot!!! There were other times I called her weak and just feeling defeated, and she would listen and comfort me. I am truly blessed to have her in my life.
So I guess this about it, I am still clear, 2 years YAY ME!!!!
Time will tell what our fate will bring, but if my story brings you nothing else. Remember its your life, live it!! It is short and make it last as long as you can for never know what wonderful people will enter your life and forever change you. Treatment sux but if it works you have extended your life. I melt inside every time I look into my daughters eyes and know that because I sucked it up and made 2 years of her life a little harder by watching mom fall apart.. I have quite probably added 20 years to our time on this planet. Be well all
Dottie
Brain fog did clear up........ my story. Joe
In 1999, I noticed that I was getting fatigued quite easily, but chalked it up to my excessive drinking. I made an appt with my PCP around September of that year to make sure nothing was wrong. He noticed that I had never had any test for Hep a, b or c and included that in the test. The Hep C came back positive. He sent me to a specialist to confirm that I had Hep C and it was confirmed.
He also told me that if I don’t do TX I will die. At the time I didn’t know anything about Hep C and figured I’d better do it. However, because of my drinking (alcoholic) he wouldn’t let me do TX until I had stopped for at least 6 months, no way was I going to do that.
Over the next 5 years I became progressively worse with the fatigue and memory problems; I still attributed to my drinking. After drinking for all of my adult life I figured it was catching up to me and decided I had better stop if I could. In April of 2005 is when I had my last drink (very proud of myself for that). After 10 months of not drinking and still having major fatigue problems I decided to do TX and get it over with. I started Feb. 2006 and finished Jan 2007. I was 1a and have been SVR since week 12 of TX.
I was supposed to have flu like symptoms, it was much worse than having the flu. I was on my own with this except for my wife being there for me. I knew nothing about forums or a support system for this. I thought I was going nuts, I was screaming at everyone for no reason.
Once TX was over I could hardly wait to get back to normal and after a couple of months I felt no better. I called the NP up that was monitoring me and told her that. She said it may take up to 6 months before it was out of my system. The 6 month point was no better. I made an appt with her and listed the many things that were not right with me, major fatigue, no short term memory, mental confusion and brain fog, could not stop sleeping etc.
She told me she never heard of such a thing happening to someone after TX. HUH?
I found out about forums for Hep C in August of 2008 and finally started getting the low down on Hep C and TX. I found that I did not have to do TX or die; in fact all my liver functions were great. My ultra sound was normal; they didn’t even have a biopsy done on me. I would have chosen not to do TX had I known that. I would have kept a close eye on my liver and held off to see if they would come up with a real cure.
My 3rd year post TX went by in January and the brain fog did clear up which in itself a great thing. But I still get fatigued easily and require a lot of sleep and naps throughout the day. My short term memory is shot and a 20 minute drive wears me out.
My problems with this disease are the lack of info out there about it. The mis-information being told those that have it is still the same, treat or die. The denial that the symptoms after TX is not related to TX; although I now see that they are admitting to some possibilities of TX causing some problems; has to be labeled as such.
I cannot work as I was an electrician which is a very demanding job, but if I were just selling popcorn I couldn’t do that either. I can’t even do volunteer work because I never know when I’m going to just poop out. I am lucky that I came down with a shoulder injury in 2007 and was able to go out on SSD for that. I know how much of a struggle it is to get SSD from the after math of TX.
I feel like I am 80 years old instead of 59. I was an IV drug user back in the late 60 as many of my friends were. Most of them have Hep c too.
Like I said use what you want or do use anything at all, I’ll let you decide on that.
Sincerely,
Joe Walsh
He also told me that if I don’t do TX I will die. At the time I didn’t know anything about Hep C and figured I’d better do it. However, because of my drinking (alcoholic) he wouldn’t let me do TX until I had stopped for at least 6 months, no way was I going to do that.
Over the next 5 years I became progressively worse with the fatigue and memory problems; I still attributed to my drinking. After drinking for all of my adult life I figured it was catching up to me and decided I had better stop if I could. In April of 2005 is when I had my last drink (very proud of myself for that). After 10 months of not drinking and still having major fatigue problems I decided to do TX and get it over with. I started Feb. 2006 and finished Jan 2007. I was 1a and have been SVR since week 12 of TX.
I was supposed to have flu like symptoms, it was much worse than having the flu. I was on my own with this except for my wife being there for me. I knew nothing about forums or a support system for this. I thought I was going nuts, I was screaming at everyone for no reason.
Once TX was over I could hardly wait to get back to normal and after a couple of months I felt no better. I called the NP up that was monitoring me and told her that. She said it may take up to 6 months before it was out of my system. The 6 month point was no better. I made an appt with her and listed the many things that were not right with me, major fatigue, no short term memory, mental confusion and brain fog, could not stop sleeping etc.
She told me she never heard of such a thing happening to someone after TX. HUH?
I found out about forums for Hep C in August of 2008 and finally started getting the low down on Hep C and TX. I found that I did not have to do TX or die; in fact all my liver functions were great. My ultra sound was normal; they didn’t even have a biopsy done on me. I would have chosen not to do TX had I known that. I would have kept a close eye on my liver and held off to see if they would come up with a real cure.
My 3rd year post TX went by in January and the brain fog did clear up which in itself a great thing. But I still get fatigued easily and require a lot of sleep and naps throughout the day. My short term memory is shot and a 20 minute drive wears me out.
My problems with this disease are the lack of info out there about it. The mis-information being told those that have it is still the same, treat or die. The denial that the symptoms after TX is not related to TX; although I now see that they are admitting to some possibilities of TX causing some problems; has to be labeled as such.
I cannot work as I was an electrician which is a very demanding job, but if I were just selling popcorn I couldn’t do that either. I can’t even do volunteer work because I never know when I’m going to just poop out. I am lucky that I came down with a shoulder injury in 2007 and was able to go out on SSD for that. I know how much of a struggle it is to get SSD from the after math of TX.
I feel like I am 80 years old instead of 59. I was an IV drug user back in the late 60 as many of my friends were. Most of them have Hep c too.
Like I said use what you want or do use anything at all, I’ll let you decide on that.
Sincerely,
Joe Walsh
Hepatitis C Survival Guide A-Z - this web site will will be made available through various parts of blog
Just incase you need it quickly and there's too many stories inbetween
In my opinion, it's the best site for people on treatment.
It was created by three outstanding women; Trishamn, Lacey & Freyja
Without this guide I don't know how I would have gotten through treatment. Thank you
Just incase you need it quickly and there's too many stories inbetween
In my opinion, it's the best site for people on treatment.
It was created by three outstanding women; Trishamn, Lacey & Freyja
Without this guide I don't know how I would have gotten through treatment. Thank you
We need to get over the stigma....Inspirational Story from Scotland
I don't really know where to start with my story as so many people have went through so much pain and hardship because of having this horrible virus. I feel I have been very fortunate not to have so far. Apart from a few episodes of real joint pains that come and go.
I am a 53 year old mother of three grown up children and have also brought up two step children. I have seven grandchildren and another one due in August. One of my daughters has had problems with alcohol and drugs and has for a number of years; as a mum it breaks your heart to see someone you love wasting their life. She is on the mend now, however, I have two of her three children living with me as both their dads died through drugs within months of each other and my daughter just couldn't cope. She lost herself more in drink and drugs. I have been caring for them for over a year; one is 3 yrs old and the other is 13 years old; it can be difficult at times as I also work full time with young adults with learning difficulties but I love them dearly and we manage.
Through all the troubles and hard times we have been through as a family I have always said "at least we have our health".
In early February this year my youngest daughter phoned me to say that her Dad had been in touch to say he had Hep C and I should be tested. We haven't been together for over 16 years and don't keep in touch only through our daughter. I spoke to my husband about getting myself tested and we decided I should as I would just worry. It would put my mind at rest. Anyway I was really healthy so I wasn't really worried about the results. The nurse I spoke to told me there was no cure but I could be tested which I was.
Three weeks later on the Friday night she called and told me the tests were positive, and I would probably get an appointment to go to the local hospital for a day bed. I made an appointment to see my Doctor. I just couldn't believe it. I was in utter shock the whole weekend.
I have a very dear friend that I have known since school who had been through treatment twice 15 years ago for Hep C and eventually cleared. She was also very active in fighting for the rights of people with this virus as she suffered in the eighties. She won’t mind me naming her. She is called Feyona and she has a wealth of information about this disease, so I knew this nurse was wrong.
I phoned her to tell her my news she was devastated; if it had not been for Feyona my weekend would have been unbearable. I was so frightened and although I had my husband he didn't understand, I felt so alone.
Feyona talked me through what would happen next and even emailed me a letter including questions etc. that I was to send to my local Doctor prior to my appointment on Monday; so that he would know what I wanted to ask him. This she said would save time. She told me to ask for copies of everything. My Doctor told me he knew very little about Hep C but was sending away more bloods to find out if the virus was active. Another time of waiting then he called to say it was and I had a viral load of 34,951, however, my liver function tests were not too bad and he didn't know the geno type yet.
I was advised by my friend not to use the local hospital as the one in Dundee had specialists in this field so I asked to be sent there. A couple of weeks later I attended the new hospital. They did all the tests again and also did a fibro scan the scan showed moderate fibrosis. I was to attend again to have an ultra sound in a couple of week’s time. The day before I was due at the hospital I received a phone call to say they had my blood results back and they showed I had been exposed to the virus but there was no active virus. They said they thought my body had cleared it by itself.
As you can imagine I was over the moon. I still had to attend for the ultra scan because of the fibrosis and they had found high ferritin/Iron which they thought may be hemochromatosis so wanted to look into it; also do my bloods again just to confirm I had no active virus.
I then received a call at work to say they had made a mistake I did have a viral load of 52,000. I just fell to bits. It was like a double whammy; getting my head around it the first time; coming to terms with it and then the relief of not having it, then I did all over again.
I had to come home from work and ended up going to the doctors crying my eyes out.
It just felt so unfair.
I have my original appointment to see the professor and get started on treatment on July 23rd so that's as far as my story goes at the moment.
Only my youngest daughter knows I have this virus I haven't found the strength to tell the rest of my family yet especially not my daughter with the addiction problems. I have told my granddaughter who is 13 and lives with me. She is amazing and keeps me positive by saying Gran this isn't your fault and we can beat this. She has researched it on the Internet and knows all about it don't you just love them eh!
I do realize I am very fortunate to have the National Health Service here as it must be so difficult when you have the added stress of money when you are going through what is a really stressful situation to begin with. My heart breaks for some of the people who are struggling to pay to get treatment.
I feel there is not enough known or addressed about this illness. My friend has fought for 20 years here in Britain to help people deal with all sorts of issues; even she still feels no-one is listening, lets hope this changes soon.
We need to get over the stigma and find the strength to stand up and be counted and listened too.
Keep up the good work Betty Love from Bonny Scotland
Ann xxx
I am a 53 year old mother of three grown up children and have also brought up two step children. I have seven grandchildren and another one due in August. One of my daughters has had problems with alcohol and drugs and has for a number of years; as a mum it breaks your heart to see someone you love wasting their life. She is on the mend now, however, I have two of her three children living with me as both their dads died through drugs within months of each other and my daughter just couldn't cope. She lost herself more in drink and drugs. I have been caring for them for over a year; one is 3 yrs old and the other is 13 years old; it can be difficult at times as I also work full time with young adults with learning difficulties but I love them dearly and we manage.
Through all the troubles and hard times we have been through as a family I have always said "at least we have our health".
In early February this year my youngest daughter phoned me to say that her Dad had been in touch to say he had Hep C and I should be tested. We haven't been together for over 16 years and don't keep in touch only through our daughter. I spoke to my husband about getting myself tested and we decided I should as I would just worry. It would put my mind at rest. Anyway I was really healthy so I wasn't really worried about the results. The nurse I spoke to told me there was no cure but I could be tested which I was.
Three weeks later on the Friday night she called and told me the tests were positive, and I would probably get an appointment to go to the local hospital for a day bed. I made an appointment to see my Doctor. I just couldn't believe it. I was in utter shock the whole weekend.
I have a very dear friend that I have known since school who had been through treatment twice 15 years ago for Hep C and eventually cleared. She was also very active in fighting for the rights of people with this virus as she suffered in the eighties. She won’t mind me naming her. She is called Feyona and she has a wealth of information about this disease, so I knew this nurse was wrong.
I phoned her to tell her my news she was devastated; if it had not been for Feyona my weekend would have been unbearable. I was so frightened and although I had my husband he didn't understand, I felt so alone.
Feyona talked me through what would happen next and even emailed me a letter including questions etc. that I was to send to my local Doctor prior to my appointment on Monday; so that he would know what I wanted to ask him. This she said would save time. She told me to ask for copies of everything. My Doctor told me he knew very little about Hep C but was sending away more bloods to find out if the virus was active. Another time of waiting then he called to say it was and I had a viral load of 34,951, however, my liver function tests were not too bad and he didn't know the geno type yet.
I was advised by my friend not to use the local hospital as the one in Dundee had specialists in this field so I asked to be sent there. A couple of weeks later I attended the new hospital. They did all the tests again and also did a fibro scan the scan showed moderate fibrosis. I was to attend again to have an ultra sound in a couple of week’s time. The day before I was due at the hospital I received a phone call to say they had my blood results back and they showed I had been exposed to the virus but there was no active virus. They said they thought my body had cleared it by itself.
As you can imagine I was over the moon. I still had to attend for the ultra scan because of the fibrosis and they had found high ferritin/Iron which they thought may be hemochromatosis so wanted to look into it; also do my bloods again just to confirm I had no active virus.
I then received a call at work to say they had made a mistake I did have a viral load of 52,000. I just fell to bits. It was like a double whammy; getting my head around it the first time; coming to terms with it and then the relief of not having it, then I did all over again.
I had to come home from work and ended up going to the doctors crying my eyes out.
It just felt so unfair.
I have my original appointment to see the professor and get started on treatment on July 23rd so that's as far as my story goes at the moment.
Only my youngest daughter knows I have this virus I haven't found the strength to tell the rest of my family yet especially not my daughter with the addiction problems. I have told my granddaughter who is 13 and lives with me. She is amazing and keeps me positive by saying Gran this isn't your fault and we can beat this. She has researched it on the Internet and knows all about it don't you just love them eh!
I do realize I am very fortunate to have the National Health Service here as it must be so difficult when you have the added stress of money when you are going through what is a really stressful situation to begin with. My heart breaks for some of the people who are struggling to pay to get treatment.
I feel there is not enough known or addressed about this illness. My friend has fought for 20 years here in Britain to help people deal with all sorts of issues; even she still feels no-one is listening, lets hope this changes soon.
We need to get over the stigma and find the strength to stand up and be counted and listened too.
Keep up the good work Betty Love from Bonny Scotland
Ann xxx
Thursday, April 29, 2010
It’s my life ...Denise
Hi - I am recently diagnosed. On my 3rd week of treatment; which as of today I have to stop. I don’t know exactly how I contracted Hep C; however, I do believe it was thru 1 of 2 blood transfusions I had back in 1976 and 1984. I have never used IV drugs; been married to same man for 20 yrs; worked in health care field for almost 30 years but never dealt with needles. I had no symptoms. I did have problems with my digestive tract so I joined a research study where they did numerous blood tests which came up possible for Hep C. I had to continue from there and had been seeing a dr who just didn’t communicate. I decided today I cannot take the treatment any longer. The side effects are so bad I cannot do my normal daily duties. I take care of my disabled mom who is 78 in a wheelchair; a 9 yr old grandson and of course hubby. They have been neglected these past few weeks that I’ve been on treatment so I quit. I don’t know much about my disease. All I know is chronic and geno type1 but I do intend to get more info from dr whether he likes it or not. It’s my life and I need to know more facts.
Thanks for listening
Thanks for listening
Hope, Pain, Sorrow.....Poem By Margie (A true Gift)
Here's one for you Betty...this is what the silly insomniac heppers do when they can't sleep
please feel free to use it in your blog if it helps.
hugs margi
I went to the doctor, my tummy is ill
He said I was fine and gave me a pill
I went to the clinic cuz my side hurt bad
The nurse was busy and just got mad
There s nothing wrong I heard her say
Just another patient and another day
Doctor, Doctor cant you see
its not in my head
Ive got Hep C
She went to the doctor a mother of three
Her neck was swollen her skin itchy
Cancer you have and these drugs will do
That Non A Non b thing is nothing to you
Cancer didn't kill her, the drugs they used did
They said good bye, each one of the kids
Doctor, doctor cant you see
Its not in her glands
Shes got Hep C
I went to the doctors my platelets were low
You're fine, have surgery, we really don't know
But this pain in my muscles and pain in my bone?
The time spent trying to get well, I want to groan
You're young, you're healthy you will heal real quick
I'm actually feeling sick sick sick
Doctor, Doctor can't you see
Its not in my head
I've got Hep C
He went to the doctor his skin was yellow
You drink too much you silly fellow
He gave him a lecture and a shot of B-12
His history as a vet, he forgot to delve
The aches and the pains he brought home from the war
He was too proud to complain he had survived much more
Doctor, Doctor cant you see
Its not in his bottle
Hes got Hep C
She went to the doctor her body ached and groaned
Her stomach was bloated, her head just moaned
I'm sorry Miss I am really not sure
But your card expired and your uninsured
We will send you to a clinic 100 miles away
You will wait several years for a doctor they say
Doctor, Doctor can you please help me
I have no job or money Hep C
He went to the doctor the best in town
He treated three times but it wouldn't go down
Dying might be a better idea
Than injecting more interferon into here
The doctor he told him, no more for you
Writing out your will is all that's left to do
Doctor, Doctor cant you see
My whole body is broken
And I've got Hep C
We are children, parents, husbands , wives and friends
It doesn't matter how it got us, it just did in the end
Some want to judge, some want to run
But curing and healing can only be done
With compassion and research and lots of trials
To cure this thing is a road of many miles
Doctors, lawyers, politicians, you want to poke
We have hep C and we need some hope
You argue, you fight, spend money on might
Your people are dying at home in a fright
We need your help, your compassion and concern
We need the misinformed to try and to learn
We don't want your pity, we want to feel well
We have the story that is each of our lives
to live
and to tell
Peace to all
please feel free to use it in your blog if it helps.
hugs margi
I went to the doctor, my tummy is ill
He said I was fine and gave me a pill
I went to the clinic cuz my side hurt bad
The nurse was busy and just got mad
There s nothing wrong I heard her say
Just another patient and another day
Doctor, Doctor cant you see
its not in my head
Ive got Hep C
She went to the doctor a mother of three
Her neck was swollen her skin itchy
Cancer you have and these drugs will do
That Non A Non b thing is nothing to you
Cancer didn't kill her, the drugs they used did
They said good bye, each one of the kids
Doctor, doctor cant you see
Its not in her glands
Shes got Hep C
I went to the doctors my platelets were low
You're fine, have surgery, we really don't know
But this pain in my muscles and pain in my bone?
The time spent trying to get well, I want to groan
You're young, you're healthy you will heal real quick
I'm actually feeling sick sick sick
Doctor, Doctor can't you see
Its not in my head
I've got Hep C
He went to the doctor his skin was yellow
You drink too much you silly fellow
He gave him a lecture and a shot of B-12
His history as a vet, he forgot to delve
The aches and the pains he brought home from the war
He was too proud to complain he had survived much more
Doctor, Doctor cant you see
Its not in his bottle
Hes got Hep C
She went to the doctor her body ached and groaned
Her stomach was bloated, her head just moaned
I'm sorry Miss I am really not sure
But your card expired and your uninsured
We will send you to a clinic 100 miles away
You will wait several years for a doctor they say
Doctor, Doctor can you please help me
I have no job or money Hep C
He went to the doctor the best in town
He treated three times but it wouldn't go down
Dying might be a better idea
Than injecting more interferon into here
The doctor he told him, no more for you
Writing out your will is all that's left to do
Doctor, Doctor cant you see
My whole body is broken
And I've got Hep C
We are children, parents, husbands , wives and friends
It doesn't matter how it got us, it just did in the end
Some want to judge, some want to run
But curing and healing can only be done
With compassion and research and lots of trials
To cure this thing is a road of many miles
Doctors, lawyers, politicians, you want to poke
We have hep C and we need some hope
You argue, you fight, spend money on might
Your people are dying at home in a fright
We need your help, your compassion and concern
We need the misinformed to try and to learn
We don't want your pity, we want to feel well
We have the story that is each of our lives
to live
and to tell
Peace to all
Being Genotype 2.......Hilltopview
Hi there. I am recently diagnosed Chronic Hep C. Low viral load 12,000 and genotype 2. I haven't been to see gastro yet but scheduled for May.
Since finding out about this virus, I have read a lot and made some radical changes. I've changed my diet, stopped drinking alcohol, caffeine, etc introduced meditation, yoga, EFT, and a range of alternative therapies.
Initially, I totally freaked out, I was gob smacked by the diagnosis. I was sitting in the small office with the doctor while she went on and on about the results of enzyme testing and all that. When she first mentioned Hep C, all I could think about was vitamin C lol! - while the ramifications were starting to swirl around in my head. I left her office in total shock. That was around the second week of March.
I have spent a lot of time reading, researching and adopting things that I feel will have a positive impact on my health. Not all of it has been easy. I have two young boys which are making all these decisions stick, though. Mind you, it's only been about a month so far. But, so far so good.
I'm now feeling probably the best I've felt in years. No headaches, more energy, less foggy brain.....
Today I got the news about the Genotype 2. I was surprised at this result as Genotype 1 is more prevalent in Australia. (Read that info from this website; really appreciate it as a good source).
My husband has been great, really supportive but I'm sure it's been really hard for him. He's seen how well I've been lately and I think that's a comfort.
Anyway, blah, blah, blah....don't know what the gastro doctor will recommend next, but I'll just take each day as it comes. The gastro doctors have all been at an annual International conference in Venice. The one I am meant to be seeing has been stuck over there because of the volcanoes and flights being cancelled. Poor thing; I wouldn't mind getting stuck in Venice.
It's been great to find a site that offers support for Hep C sufferers and a place to share. It's not something I want to update my facebook status with - that's for sure! lol.
Well look forward to meeting you and sharing the journey.
Hilltopview
Since finding out about this virus, I have read a lot and made some radical changes. I've changed my diet, stopped drinking alcohol, caffeine, etc introduced meditation, yoga, EFT, and a range of alternative therapies.
Initially, I totally freaked out, I was gob smacked by the diagnosis. I was sitting in the small office with the doctor while she went on and on about the results of enzyme testing and all that. When she first mentioned Hep C, all I could think about was vitamin C lol! - while the ramifications were starting to swirl around in my head. I left her office in total shock. That was around the second week of March.
I have spent a lot of time reading, researching and adopting things that I feel will have a positive impact on my health. Not all of it has been easy. I have two young boys which are making all these decisions stick, though. Mind you, it's only been about a month so far. But, so far so good.
I'm now feeling probably the best I've felt in years. No headaches, more energy, less foggy brain.....
Today I got the news about the Genotype 2. I was surprised at this result as Genotype 1 is more prevalent in Australia. (Read that info from this website; really appreciate it as a good source).
My husband has been great, really supportive but I'm sure it's been really hard for him. He's seen how well I've been lately and I think that's a comfort.
Anyway, blah, blah, blah....don't know what the gastro doctor will recommend next, but I'll just take each day as it comes. The gastro doctors have all been at an annual International conference in Venice. The one I am meant to be seeing has been stuck over there because of the volcanoes and flights being cancelled. Poor thing; I wouldn't mind getting stuck in Venice.
It's been great to find a site that offers support for Hep C sufferers and a place to share. It's not something I want to update my facebook status with - that's for sure! lol.
Well look forward to meeting you and sharing the journey.
Hilltopview
LIVING WITH HEPATITIS....by Curtis
I was diagnosed with Hepatitis C in June of 2006. It has been a real challenge everyday. Because of the disease I have cirrhosis. The doctor found that I had cirrhosis after a biopsy of my liver. He then said that there was nothing that could be done to help me and that usually in cases like mine there is a fifty percent of a five year survival rate. I sought help at an upstate university that is well known for their care in liver disease. I had to go through another biopsy and the findings were the same. I went through the 48 weeks of treatment plus an additional 28 as a maintenance trial to slow the progression of the cirrhosis. I had to stop because I could not deal with it any longer. My tough guy ego was gone. I became so depressed and had lost over 60 pounds. Then I sought counseling to get through the tough time. I continued working through all the treatment, but eventually had to go on medical leave. I could not think clearly and the fatigue was unbearable. Now I have thyroid problems; I am now diabetic; severe arthritis in the spine; cirrhosis and now on top of all this I lost my medical insurance. I can't afford the insulin and I have been not going to the doctors on a regular basis. Everyday I wonder what is next to knock me down and when is it going to happen. I have no idea at all of how I contracted Hep C; no drugs, tattoos etc.. But one thing comes to mind is that when I was in the service, back in the seventies, I was given shots in the arm via air gun injection, which might be why the doctors ask when I was in the service. There are a lot of things that I might have left out of my story but I have to end it now. Too tired to continue typing. It has been hell for the last 4 years to best sum it up and kind of not wanting to feel like this to much longer. I just wish the treatment would have worked for me.
Thank You
Curtis Hadlick
Thank You
Curtis Hadlick
Wednesday, April 28, 2010
Be grateful for every day.....ADRIENNE’S JOURNEY
My name is Adrienne and I would like to share with you my transplant experience.
I wish to dedicate this chapter to my husband Hank for his unconditional love, devotion and support while I was going through my medical ordeal. To my family for always being there and never judging me. My best friend Linda who listens to me through my many ups and downs. My transplant surgeon Dr. B for his steady hand and kindness. Dr. G who saved my life. Tina, my transplant coordinator without whose guiding hand I would have been lost. To the doctors and nurses I have met since coming to UCLA. Last, but not least Elizabeth for without her none of this would be possible for us to share with you.
After a hernia operation in 1994 I was diagnosed with hepatitis C. In 1995 at the age of forty five I met my husband and life mate. We went back to his house to talk and have coffee. On his coffee table I noticed a book, the cover stated Hepatitis C. I asked him if he had hep-C. Hank was the first person I had ever told about having hepatitis C.
Shortly afterwards we were married. Soon after this I began feeling bad, so my husband took me to the doctor. There were a battery of tests and they discovered I had cirrhosis of the liver.
My husband had used interferon and it helped him, he is still undetected to this day. I did the treatment for a year with no side effects, but my liver was in the end stage by this time and I had been in and out of hospital many times. Dr. T. referred me to UCLA where I meet Dr. G. the man who would save my life. He told me my liver was so far gone, that the only choice I had at this point was to get me a new liver.
Well, you face many demons when you know you are dying, so I made my peace with God and left it in his hands. I was in hospital several times after I had been placed on the waiting list. I went through all the evaluation tests during one of my stays; this was before the MELD scoring system was in effect. I didn’t think I would make it very long. It was a real downhill slide as I didn’t think I would get a liver. I was no one special, why should they give me a liver and not someone else? That is how I felt! Then Hank said something that blew me away, it was simple. He said “Adrienne, God didn’t bring you this far to drop you on your fanny now!” It was the truth!
On February 10, 1998 around 10.00 pm the call came, my husband answered the phone it was Barbara N my pre transplant coordinator. When we got the call needless to say so much goes through your mind at a time like this. Do I have to have it? Will I live to see another day? The words of my husband came to me again at that point I put myself into God’s hands.
We got to the hospital around 11:45pm and were brought right up to a room a doctor came in to tell me they were running tests on the donor’s liver which was being flown in from Arizona. After more test were run blood work, EKG, etc; all was well with the liver except it had hepatitis B antibodies, but having hepatitis C already meant it did not play a big role in the decision to go ahead. At this point I only remember bits and pieces of what happened. But, I do remember the operating room with all the doctors and nurses. I remember joking a lot with them that is something I do when I am nervous. Then, off I went to sleep…
I was in the ICU hearing muffled sounds in the background and trying like all heck to open my eyes, but I couldn’t no matter how hard I tried. I remembered thinking they will never know I’m alive if I can’t get my eyes open. Thinking about it now is funny, but it seemed at that time to be a matter of life and death to me. I must have been struggling a bit because there were restraints at my hands then I got my eyes open and saw my husband for the first time. “I am alive”! “I am alive”! I kept repeating. The thing that had scared me the most about the whole transplant was not rejection or how the operation went, it was just not dying on the operating table and not being able to say goodbye to my husband family and friends.
The first day on the liver transplant floor is a day I do not really remember. The second day I was ready to try and get up. I wanted to get my life back to normal as soon as possible. Yes, it hurt a lot but by the fourth day I was walking down the hall to the laundry area getting my own bedding and making my own bed. I liked my bedding a certain way and didn’t want to give the nurses extra work they already had enough to do. The nurses on the floor were fantastic and their care was terrific.
Now I was over the three day period and from that day forward I never gave a thought in my heart that my new liver would reject, it felt right at home. Everything started to confuse me I had never used a computer, so I had no one to talk to who had been through a transplant. If my husband hadn’t been there when the medications were explained to me I would have been lost. It is so important to have family and friends when you are going through a transplant.
Well coming home was a little harder for me because I had to spend my days alone Hank was working as hard as always. There was a great deal of bandaging and cleaning of the tube area and getting used to all the medications. Everything went wonderfully; the clinic and the coordinators were just the most supportive people you can imagine.
Since my liver transplant in 1998 I have been doing very well; the energy level was a little less than before but I am so grateful for every day. In 1998 treatment was not the norm for post liver transplant patients who have hepatitis C.
In April of 2002 I had my first rejection episode after a year of interferon treatment, which had worked for me. I had been undetected since May of 2002. While I was in hospital I was told a second transplant would be needed. I was shocked to hear this. So, all my evaluations test were done again; my rejection was now controlled, but I have been in chronic rejection since that time. I was relisted for a second transplant in October, 2002 and am still waiting, and waiting and waiting…just like a little energizer bunny.
I have my good days and bad days but all in all it is not so bad the second time knowing what to expect and also having the knowledge now. The first transplant I didn’t even own a computer so I was alone except for my family. I am so grateful to so many through the years and especially now being able to help so many in need that have just received a transplant or are on waiting lists. Giving back is the most important part of my life. Besides my family this is what I do and who I am. The things I have learned is live life to the fullest…be grateful for every day, helping others enriches your life and being blessed with a great family and friends.
Live on my friends and thank you John with all my heart for the “Gift of Life” you have given to me
LACK OF AWARENESS STOPS HEPATITIS C TESTING:
Hepatitis C can be detected with a simple test it is a potentially life-threatening viral disease of the liver transmitted through blood and blood products. It is the most common blood borne disease in the US. Over time chronic infection can lead to cirrhosis, liver failure or liver cancer.
I wish to dedicate this chapter to my husband Hank for his unconditional love, devotion and support while I was going through my medical ordeal. To my family for always being there and never judging me. My best friend Linda who listens to me through my many ups and downs. My transplant surgeon Dr. B for his steady hand and kindness. Dr. G who saved my life. Tina, my transplant coordinator without whose guiding hand I would have been lost. To the doctors and nurses I have met since coming to UCLA. Last, but not least Elizabeth for without her none of this would be possible for us to share with you.
After a hernia operation in 1994 I was diagnosed with hepatitis C. In 1995 at the age of forty five I met my husband and life mate. We went back to his house to talk and have coffee. On his coffee table I noticed a book, the cover stated Hepatitis C. I asked him if he had hep-C. Hank was the first person I had ever told about having hepatitis C.
Shortly afterwards we were married. Soon after this I began feeling bad, so my husband took me to the doctor. There were a battery of tests and they discovered I had cirrhosis of the liver.
My husband had used interferon and it helped him, he is still undetected to this day. I did the treatment for a year with no side effects, but my liver was in the end stage by this time and I had been in and out of hospital many times. Dr. T. referred me to UCLA where I meet Dr. G. the man who would save my life. He told me my liver was so far gone, that the only choice I had at this point was to get me a new liver.
Well, you face many demons when you know you are dying, so I made my peace with God and left it in his hands. I was in hospital several times after I had been placed on the waiting list. I went through all the evaluation tests during one of my stays; this was before the MELD scoring system was in effect. I didn’t think I would make it very long. It was a real downhill slide as I didn’t think I would get a liver. I was no one special, why should they give me a liver and not someone else? That is how I felt! Then Hank said something that blew me away, it was simple. He said “Adrienne, God didn’t bring you this far to drop you on your fanny now!” It was the truth!
On February 10, 1998 around 10.00 pm the call came, my husband answered the phone it was Barbara N my pre transplant coordinator. When we got the call needless to say so much goes through your mind at a time like this. Do I have to have it? Will I live to see another day? The words of my husband came to me again at that point I put myself into God’s hands.
We got to the hospital around 11:45pm and were brought right up to a room a doctor came in to tell me they were running tests on the donor’s liver which was being flown in from Arizona. After more test were run blood work, EKG, etc; all was well with the liver except it had hepatitis B antibodies, but having hepatitis C already meant it did not play a big role in the decision to go ahead. At this point I only remember bits and pieces of what happened. But, I do remember the operating room with all the doctors and nurses. I remember joking a lot with them that is something I do when I am nervous. Then, off I went to sleep…
I was in the ICU hearing muffled sounds in the background and trying like all heck to open my eyes, but I couldn’t no matter how hard I tried. I remembered thinking they will never know I’m alive if I can’t get my eyes open. Thinking about it now is funny, but it seemed at that time to be a matter of life and death to me. I must have been struggling a bit because there were restraints at my hands then I got my eyes open and saw my husband for the first time. “I am alive”! “I am alive”! I kept repeating. The thing that had scared me the most about the whole transplant was not rejection or how the operation went, it was just not dying on the operating table and not being able to say goodbye to my husband family and friends.
The first day on the liver transplant floor is a day I do not really remember. The second day I was ready to try and get up. I wanted to get my life back to normal as soon as possible. Yes, it hurt a lot but by the fourth day I was walking down the hall to the laundry area getting my own bedding and making my own bed. I liked my bedding a certain way and didn’t want to give the nurses extra work they already had enough to do. The nurses on the floor were fantastic and their care was terrific.
Now I was over the three day period and from that day forward I never gave a thought in my heart that my new liver would reject, it felt right at home. Everything started to confuse me I had never used a computer, so I had no one to talk to who had been through a transplant. If my husband hadn’t been there when the medications were explained to me I would have been lost. It is so important to have family and friends when you are going through a transplant.
Well coming home was a little harder for me because I had to spend my days alone Hank was working as hard as always. There was a great deal of bandaging and cleaning of the tube area and getting used to all the medications. Everything went wonderfully; the clinic and the coordinators were just the most supportive people you can imagine.
Since my liver transplant in 1998 I have been doing very well; the energy level was a little less than before but I am so grateful for every day. In 1998 treatment was not the norm for post liver transplant patients who have hepatitis C.
In April of 2002 I had my first rejection episode after a year of interferon treatment, which had worked for me. I had been undetected since May of 2002. While I was in hospital I was told a second transplant would be needed. I was shocked to hear this. So, all my evaluations test were done again; my rejection was now controlled, but I have been in chronic rejection since that time. I was relisted for a second transplant in October, 2002 and am still waiting, and waiting and waiting…just like a little energizer bunny.
I have my good days and bad days but all in all it is not so bad the second time knowing what to expect and also having the knowledge now. The first transplant I didn’t even own a computer so I was alone except for my family. I am so grateful to so many through the years and especially now being able to help so many in need that have just received a transplant or are on waiting lists. Giving back is the most important part of my life. Besides my family this is what I do and who I am. The things I have learned is live life to the fullest…be grateful for every day, helping others enriches your life and being blessed with a great family and friends.
Live on my friends and thank you John with all my heart for the “Gift of Life” you have given to me
LACK OF AWARENESS STOPS HEPATITIS C TESTING:
Hepatitis C can be detected with a simple test it is a potentially life-threatening viral disease of the liver transmitted through blood and blood products. It is the most common blood borne disease in the US. Over time chronic infection can lead to cirrhosis, liver failure or liver cancer.
Monday, April 26, 2010
"This blood may contain hepatitis or other viruses" and it did............
My name is Candice and I'm 59 yrs old. I worked as a pediatric RN until I was 45, when I started having pain all over. I went from Dr to Dr and ended up with a Rheumatologist who diagnosed me with fibromyalgia. I was put on pain meds and had my blood tested every 3 months; went on for years. At one point I could barely walk from the bedroom to the couch without becoming out of breath. At age 56 I decided to start riding lessons and bought a horse to get some exercise. I started feeling better physically, but still couldn't work. At 58 I decided to get a facelift, hoping it would make me feel younger. The surgeon did several blood tests prior to the surgery, including HIV, Hepatitis A, B and C. I was shocked when he called and told me I had Hep C. I had 2 pints of blood transfused when I had a c-section in 1978, and I still remembered the warning on the bags-"This blood may contain hepatitis or other viruses".
I had told every Dr I went to about it and no one ever tested me! I asked why after the diagnose and was told that my liver enzymes were normal. How could this happen to me? I never did IV drugs (which is what you're taught is the cause of Hep C). Since the diagnose, I have done a lot of research and have decided not to treat with the current treatment, which is 40% effective at best for my type 1a. I don't think I could make it through the tx with the pain and depression I have. So I am waiting for a hopefully less toxic and more effective tx. I was also concerned with the lasting effects of the toxic cocktail. Meanwhile I am not drinking, eating healthier and taking herbs and supplements. So far my liver is in pretty good shape, with grade1, stage 0-1. My husband of 15 yrs tested negative. So life goes on. My Dr says I will probably die form something else. I am in constant pain, but manage to push through it and live a decent life. My positive attitude and spirituality help me through.
I had told every Dr I went to about it and no one ever tested me! I asked why after the diagnose and was told that my liver enzymes were normal. How could this happen to me? I never did IV drugs (which is what you're taught is the cause of Hep C). Since the diagnose, I have done a lot of research and have decided not to treat with the current treatment, which is 40% effective at best for my type 1a. I don't think I could make it through the tx with the pain and depression I have. So I am waiting for a hopefully less toxic and more effective tx. I was also concerned with the lasting effects of the toxic cocktail. Meanwhile I am not drinking, eating healthier and taking herbs and supplements. So far my liver is in pretty good shape, with grade1, stage 0-1. My husband of 15 yrs tested negative. So life goes on. My Dr says I will probably die form something else. I am in constant pain, but manage to push through it and live a decent life. My positive attitude and spirituality help me through.
Get The Facts About Hepatitis C Viral Load
Think A High Viral Count Means Advanced Hep C?
Maybe Not.......
Think A High Viral Count Means Advanced Hep C?
Maybe Not.......
Sunday, April 25, 2010
There is always hope.......Daryl
So many have been through some incredibly tough times,and yet you remain so strong, and such a positive force here for others. I an inspired every time I come here, or to Betty's blog.
Without the inspiration and love that you all give so freely, I could not face my own challenges, however much they pale against the battles that others have, and continue to face.
You are all amazing people, with amazing stories of courage and strength. Who could not be touched deeply, and motivated to carry on, with reading about your experiences.
Life has it's share of ups and downs...Oh yes. You all have reminded me to keep my head up, be strong in the face of adversity, and remember to cherish life and to have hope...even when it seems like there is none.
There is always hope, and around you all there is always love.
Some thoughts I wanted to share with you fine people.
Love you,
Daryl
Without the inspiration and love that you all give so freely, I could not face my own challenges, however much they pale against the battles that others have, and continue to face.
You are all amazing people, with amazing stories of courage and strength. Who could not be touched deeply, and motivated to carry on, with reading about your experiences.
Life has it's share of ups and downs...Oh yes. You all have reminded me to keep my head up, be strong in the face of adversity, and remember to cherish life and to have hope...even when it seems like there is none.
There is always hope, and around you all there is always love.
Some thoughts I wanted to share with you fine people.
Love you,
Daryl
Saturday, April 24, 2010
Caroline's Blog Within a Blog.....to be continued
TUESDAY, JANUARY 26, 2010
First time for everything....
So this is my first time writing a blog. It will be the first time I also talk about my Hep C. I have lived with this now for about 30 years, I figure, and the time has finally come to try and deal with it. I will go next week for my first visit to try and get enrolled in a new Study to treat and eradicate this viral timebomb that I have been worrying about for 10 years now. I'm nervous, anxious, excited. I will try to keep this updated with my feelings, troubles, etc that go along with this long treatment.
As a side note, it's bright and sunny here, but they forecast ran this evening. I am hoping they are wrong. :)
TUESDAY, FEBRUARY 2, 2010
First appointment for the study...
So today I had my first appointment with the medical research group that will be doing the study I'm trying to get into. I had thought I might actually be starting the treatment today, but the visit was the first of their screening process. Guess they need to make sure I qualify for their study. My liver doctor is helping to run the study as well, so I had assumed I was a shoe-in. Anyways, they took about 7 tubes of blood, and did an EKG and a physical to make sure I was ok. My bloodwork will take a week to get back. At first they told me it could be as long as 8 weeks before I could start up on the treatment, but because I am a patient of the study doctor, it might go quicker. So, I probably won't be on the juice until next month. One thing I am hopeful for is that my liver biopsy from 2007 is sufficient for them. They want one every 3 years, and it will be 3 years to the day next month. I REALLY do not want to get another one so soon. The thing that was a little un-nerving was when they read the consent form. It had pages of possible side effects (I guess some aren't just possible but most likely probable) and how they can try and deal with them all. It went over the amount of pills I will need to take daily. I new I would have to take some pills, but they said it could be as much as 15 pills a day! So going from taking no medication daily to 15 will be interesting. My stomach is upset just thinking about it. The other thing that was interesting was how I would have been required to take birth control pills, even if I had my tubes tied. Luckily, (I say this now), I had a hysterectomy 2 years ago, so I will not have to take those pills on top of the others. Guess they can't take any chances that a woman might get pregnant in the study, as the baby would have to be aborted.
So for now I wait til the next phone call, which will be next week. I still need to get a couple more tests done, but none are invasive or painful. I will update this when I know more.
FRIDAY, FEBRUARY 19, 2010
Last test before the study starts...I hope.
Got a call from the research group. All my blood work came back, and the results were all within their boundaries. I needed to go get a chest xray next. I asked about the liver ultrasound, and they said it would not be needed. And, they said my liver biopsy from 3 years ago is sufficient as well. So I ran down, got the xray, and now am waiting again to hear what the next step is. I believe, there are no more prelim tests needed. The next visit should be for when we actually start on the meds. She said it could be as soon as next week. It's getting a little scary now, knowing it's coming up so quick. I'll post again, when I have more to report.
FRIDAY, MARCH 19, 2010
It's begun...
Well yesterday was the big day. I have started my treatment. I took my first interferon shot. Was very nervous about the shot...I hate needles. It's a shot/pen device though, so the needle was very short and very thin. I decided rather than having the nurse do it, and then telling my husband how, I would bite the bullet and do it myself. It was a piece of cake. I went home and took my first dose of Riboviron, had lunch (they say it's best to take that stuff with food) and then went home. By evening, I felt like I had the flu...chills, aches, and a headache behind my eyes. I took a nap, had dinner, and then noticed I was hot. I had a fever too. Took a couple tylenol, and went to sleep. Today, the chills/fever are gone. Fell pretty good...have a small headache, but nothing bad. Hopefully, thats the last of the flu-like symptoms I will feel until next week for my next shot.
They packed me up with all kinds of stuff, and it was overwhelming. I have an electronic drug diary I have to use every night to input what pills/medicine I have taken. I have to make sure I take my blood pressure the day before my next injection. I have to note all over-the-counter stuff I take to combat side effects. Today, I don't feel so overwhelmed.
While I'm glad I no longer am waiting to start this thing, I'm apprehensive about what is to come. Guess I'm just a worry wort.
MONDAY, MARCH 22, 2010
So far, so good...
The weekend went pretty well. I am doing my ribavarin doses, twice a day. Have not had any bad side effects from it yet. It seems so far, the only bad reaction was to the interferon shot, and that only lasted 12 hours. I will keep my fingers crossed that is the worst of it. I do seem to feel a little itchier than normal, but the little bit of a headache I have had is gone. No digestive problems to report.
I am not a pill taker. I have never been on any prescribed medication, except for antibiotics when they were needed. It's quite an adjustment for me to now have to remember taking pills twice a day. It will be even more annoying when I start taking the 3rd drug, which I will need to take 3 times a day.
Well thats it for now.
FRIDAY, MARCH 26, 2010
TGIF!
Yay it's Friday. What a long week. While I am not having any troublesome side effects so far, I am tired a lot. Been taking naps in the afternoon, and then sleeping through the night as well. Thursday was my 2nd injection. Since I knew more of what to expect, it went along better than the first shot. Speaking of my first shot, I have a bruise there. Been going on a week now...it doesn't seem to be fading either. I asked my doctor about it...they said if there is no pain, then don't worry. I have an appt to see them next Friday. I'll see if it's still there at that time.
I have all these things I want to do this weekend. I'll see if I'm not too tired to do them all. :)
Wednesday, March 31, 2010
So things seem to be going well. I have not been overwhelmed with any crazy side effects yet. I worry something will happen down the line, but so far nothing is too bad. I've been very thirsty, so trying to drink lots of water. I normally have caffeine free diet pepsi, but I've been so thirsty, I find I can drink a 6 pack easily. Don't want to drink that much soda. Of course, all the drinking is also making me pee more often as well. Been noticing my skin seems to be very dry, so using more skin lotion. My initial injection site still has a dark blue bruise...gonna have to have it checked out this Friday at my bi-weekly checkup. I've also been very tired. Been taking naps in the afternoon, and still am able to sleep through the night. Have also been getting out of breath easily...I recover, but that is a new thing to me as well.
Not sure when I will know if things are working yet or not. I'll ask this Friday and find out more. But so far so good. Have not had to miss work or not do anything I wanted to do.
Laterz....
MONDAY, APRIL 5, 2010
Another shot, another day...
So took my 3rd interferon shot last Thursday. Did this one in my thigh as it seemed my stomach area was getting kinda sore. My jeans are a little snug in the waist. :) So prepped the area on my thigh, stuck the needle in and...eeek! Forgot to set the dosage on the syringe. Had to pull the needle out and do that, and then stick again. Won't forget to do that again! It seemed to burn a little this time when I pushed in on the plunger. Other than that, it's ok...no bruising, no swelling. It does itch from time to time. Felt a little crappy later in the day...sensitive skin. Did not get a fever.
I've been getting itchy...scratched a couple spots on my back, and have one on my chest as well. I will have to make sure I use my eucerin lotion to help stop the itchiness. Still feel pretty tired most of the time.
Found out some interesting data on my Friday visit to the clinic. My starting viral load number is 4,260,000. In order for this treatment to be considered working and effective, that number needs to drop 2 log. That means it needs to drop 2 decimal points to something like 42,600. This is measured at week 12. However, I will know if something is happening this coming Friday. It probably won't be dramatic, but I would expect to see a drop of some kind. I will also know if I am heading towards anemia this week as well. I'm keeping my fingers crossed for all the tests.
FRIDAY, APRIL 9, 2010
4 shots down...44 to go.
Took my 4th peg-interferon shot yesterday. Put this one in my lower belly, like my first 2. The one I did in my thigh is pretty red looking...like a rash. It was a little itchy...gonna see if it fades a little. So far everything seems to be ok, as far as side effects go. Still tired, and getting more itchy. I have some itchy spots now on my back, and on my chest. And on my ankle. Will have to ask the doctor on the 13th, when I go for my next checkup. I may know if the treatment is working as well that day.
The initial bruise I have on my belly is finally starting to fade. I have noticed my eyesight is more blurry than it was before I started. Not sure what that is all about. I will ask the doc that as well. I think next week, I will start up on the boceprevir. Joy...more pills. But, I have been reading alot about boce and everyone that has taken it, seems to have cleared the virus. Something to look forward to!
Well thats it for me...laterz
THURSDAY, APRIL 15, 2010
April 13th visit update
Went in for my next check up get more blood drawn, and this time see my doctor. He went over my numbers...this is after 2 weeks on treatment, using the peg-interferon and riba. Starting viral load was 4,260,000. As of 2 weeks it's 680,000. Yay! I am hoping it doesn't start going back up. However, my red cell count has dropped, and so has my white cell count. That is normal, but still something to keep an eye on. I started on the boceprevir on the 13th as well. I have to take 4 horse pills, 3 times a day in addition to the riba pills. So far, no side effects from the boce that I can notice.
I started visiting a hep c forum, and that has been a great find. Lots of people like me who are going through treatment, and have gone through treatment. One woman was on my exact treatment, and said she was cleared after 6 weeks. We'll see if I get the same results.
Thats all I got for now...laterz.
MONDAY, APRIL 19, 2010
Wow...I'm anemic already...
Got a call from my research team. My blood draw on April 13th shows I am still trending down into anemia territory. They have now put me into one of the test ARMs for the study. I have reduced my riba dose by one pill...so now I take 2 in the morning and 2 at night, instead of 2 in the morning and 3 at night. This past weekend I was just exhausted...all day Friday, most of the day Saturday, and Sunday too. Tried to catch up on rest. I am hoping the riba reduction will bring my red cells back up and this will help with the general exhaustion I've been feeling now for the past week or so. I don't know how long it takes for the body to rebound. I have to go in tomorrow for another blood draw to see what is happening. I'll know more by the end of this week.
Laterz...
First time for everything....
So this is my first time writing a blog. It will be the first time I also talk about my Hep C. I have lived with this now for about 30 years, I figure, and the time has finally come to try and deal with it. I will go next week for my first visit to try and get enrolled in a new Study to treat and eradicate this viral timebomb that I have been worrying about for 10 years now. I'm nervous, anxious, excited. I will try to keep this updated with my feelings, troubles, etc that go along with this long treatment.
As a side note, it's bright and sunny here, but they forecast ran this evening. I am hoping they are wrong. :)
TUESDAY, FEBRUARY 2, 2010
First appointment for the study...
So today I had my first appointment with the medical research group that will be doing the study I'm trying to get into. I had thought I might actually be starting the treatment today, but the visit was the first of their screening process. Guess they need to make sure I qualify for their study. My liver doctor is helping to run the study as well, so I had assumed I was a shoe-in. Anyways, they took about 7 tubes of blood, and did an EKG and a physical to make sure I was ok. My bloodwork will take a week to get back. At first they told me it could be as long as 8 weeks before I could start up on the treatment, but because I am a patient of the study doctor, it might go quicker. So, I probably won't be on the juice until next month. One thing I am hopeful for is that my liver biopsy from 2007 is sufficient for them. They want one every 3 years, and it will be 3 years to the day next month. I REALLY do not want to get another one so soon. The thing that was a little un-nerving was when they read the consent form. It had pages of possible side effects (I guess some aren't just possible but most likely probable) and how they can try and deal with them all. It went over the amount of pills I will need to take daily. I new I would have to take some pills, but they said it could be as much as 15 pills a day! So going from taking no medication daily to 15 will be interesting. My stomach is upset just thinking about it. The other thing that was interesting was how I would have been required to take birth control pills, even if I had my tubes tied. Luckily, (I say this now), I had a hysterectomy 2 years ago, so I will not have to take those pills on top of the others. Guess they can't take any chances that a woman might get pregnant in the study, as the baby would have to be aborted.
So for now I wait til the next phone call, which will be next week. I still need to get a couple more tests done, but none are invasive or painful. I will update this when I know more.
FRIDAY, FEBRUARY 19, 2010
Last test before the study starts...I hope.
Got a call from the research group. All my blood work came back, and the results were all within their boundaries. I needed to go get a chest xray next. I asked about the liver ultrasound, and they said it would not be needed. And, they said my liver biopsy from 3 years ago is sufficient as well. So I ran down, got the xray, and now am waiting again to hear what the next step is. I believe, there are no more prelim tests needed. The next visit should be for when we actually start on the meds. She said it could be as soon as next week. It's getting a little scary now, knowing it's coming up so quick. I'll post again, when I have more to report.
FRIDAY, MARCH 19, 2010
It's begun...
Well yesterday was the big day. I have started my treatment. I took my first interferon shot. Was very nervous about the shot...I hate needles. It's a shot/pen device though, so the needle was very short and very thin. I decided rather than having the nurse do it, and then telling my husband how, I would bite the bullet and do it myself. It was a piece of cake. I went home and took my first dose of Riboviron, had lunch (they say it's best to take that stuff with food) and then went home. By evening, I felt like I had the flu...chills, aches, and a headache behind my eyes. I took a nap, had dinner, and then noticed I was hot. I had a fever too. Took a couple tylenol, and went to sleep. Today, the chills/fever are gone. Fell pretty good...have a small headache, but nothing bad. Hopefully, thats the last of the flu-like symptoms I will feel until next week for my next shot.
They packed me up with all kinds of stuff, and it was overwhelming. I have an electronic drug diary I have to use every night to input what pills/medicine I have taken. I have to make sure I take my blood pressure the day before my next injection. I have to note all over-the-counter stuff I take to combat side effects. Today, I don't feel so overwhelmed.
While I'm glad I no longer am waiting to start this thing, I'm apprehensive about what is to come. Guess I'm just a worry wort.
MONDAY, MARCH 22, 2010
So far, so good...
The weekend went pretty well. I am doing my ribavarin doses, twice a day. Have not had any bad side effects from it yet. It seems so far, the only bad reaction was to the interferon shot, and that only lasted 12 hours. I will keep my fingers crossed that is the worst of it. I do seem to feel a little itchier than normal, but the little bit of a headache I have had is gone. No digestive problems to report.
I am not a pill taker. I have never been on any prescribed medication, except for antibiotics when they were needed. It's quite an adjustment for me to now have to remember taking pills twice a day. It will be even more annoying when I start taking the 3rd drug, which I will need to take 3 times a day.
Well thats it for now.
FRIDAY, MARCH 26, 2010
TGIF!
Yay it's Friday. What a long week. While I am not having any troublesome side effects so far, I am tired a lot. Been taking naps in the afternoon, and then sleeping through the night as well. Thursday was my 2nd injection. Since I knew more of what to expect, it went along better than the first shot. Speaking of my first shot, I have a bruise there. Been going on a week now...it doesn't seem to be fading either. I asked my doctor about it...they said if there is no pain, then don't worry. I have an appt to see them next Friday. I'll see if it's still there at that time.
I have all these things I want to do this weekend. I'll see if I'm not too tired to do them all. :)
Wednesday, March 31, 2010
So things seem to be going well. I have not been overwhelmed with any crazy side effects yet. I worry something will happen down the line, but so far nothing is too bad. I've been very thirsty, so trying to drink lots of water. I normally have caffeine free diet pepsi, but I've been so thirsty, I find I can drink a 6 pack easily. Don't want to drink that much soda. Of course, all the drinking is also making me pee more often as well. Been noticing my skin seems to be very dry, so using more skin lotion. My initial injection site still has a dark blue bruise...gonna have to have it checked out this Friday at my bi-weekly checkup. I've also been very tired. Been taking naps in the afternoon, and still am able to sleep through the night. Have also been getting out of breath easily...I recover, but that is a new thing to me as well.
Not sure when I will know if things are working yet or not. I'll ask this Friday and find out more. But so far so good. Have not had to miss work or not do anything I wanted to do.
Laterz....
MONDAY, APRIL 5, 2010
Another shot, another day...
So took my 3rd interferon shot last Thursday. Did this one in my thigh as it seemed my stomach area was getting kinda sore. My jeans are a little snug in the waist. :) So prepped the area on my thigh, stuck the needle in and...eeek! Forgot to set the dosage on the syringe. Had to pull the needle out and do that, and then stick again. Won't forget to do that again! It seemed to burn a little this time when I pushed in on the plunger. Other than that, it's ok...no bruising, no swelling. It does itch from time to time. Felt a little crappy later in the day...sensitive skin. Did not get a fever.
I've been getting itchy...scratched a couple spots on my back, and have one on my chest as well. I will have to make sure I use my eucerin lotion to help stop the itchiness. Still feel pretty tired most of the time.
Found out some interesting data on my Friday visit to the clinic. My starting viral load number is 4,260,000. In order for this treatment to be considered working and effective, that number needs to drop 2 log. That means it needs to drop 2 decimal points to something like 42,600. This is measured at week 12. However, I will know if something is happening this coming Friday. It probably won't be dramatic, but I would expect to see a drop of some kind. I will also know if I am heading towards anemia this week as well. I'm keeping my fingers crossed for all the tests.
FRIDAY, APRIL 9, 2010
4 shots down...44 to go.
Took my 4th peg-interferon shot yesterday. Put this one in my lower belly, like my first 2. The one I did in my thigh is pretty red looking...like a rash. It was a little itchy...gonna see if it fades a little. So far everything seems to be ok, as far as side effects go. Still tired, and getting more itchy. I have some itchy spots now on my back, and on my chest. And on my ankle. Will have to ask the doctor on the 13th, when I go for my next checkup. I may know if the treatment is working as well that day.
The initial bruise I have on my belly is finally starting to fade. I have noticed my eyesight is more blurry than it was before I started. Not sure what that is all about. I will ask the doc that as well. I think next week, I will start up on the boceprevir. Joy...more pills. But, I have been reading alot about boce and everyone that has taken it, seems to have cleared the virus. Something to look forward to!
Well thats it for me...laterz
THURSDAY, APRIL 15, 2010
April 13th visit update
Went in for my next check up get more blood drawn, and this time see my doctor. He went over my numbers...this is after 2 weeks on treatment, using the peg-interferon and riba. Starting viral load was 4,260,000. As of 2 weeks it's 680,000. Yay! I am hoping it doesn't start going back up. However, my red cell count has dropped, and so has my white cell count. That is normal, but still something to keep an eye on. I started on the boceprevir on the 13th as well. I have to take 4 horse pills, 3 times a day in addition to the riba pills. So far, no side effects from the boce that I can notice.
I started visiting a hep c forum, and that has been a great find. Lots of people like me who are going through treatment, and have gone through treatment. One woman was on my exact treatment, and said she was cleared after 6 weeks. We'll see if I get the same results.
Thats all I got for now...laterz.
MONDAY, APRIL 19, 2010
Wow...I'm anemic already...
Got a call from my research team. My blood draw on April 13th shows I am still trending down into anemia territory. They have now put me into one of the test ARMs for the study. I have reduced my riba dose by one pill...so now I take 2 in the morning and 2 at night, instead of 2 in the morning and 3 at night. This past weekend I was just exhausted...all day Friday, most of the day Saturday, and Sunday too. Tried to catch up on rest. I am hoping the riba reduction will bring my red cells back up and this will help with the general exhaustion I've been feeling now for the past week or so. I don't know how long it takes for the body to rebound. I have to go in tomorrow for another blood draw to see what is happening. I'll know more by the end of this week.
Laterz...
I'm a fighter from way back....... Helena
I found out I had Hep C in September 2007. I was caring for my husband who was going through cancer treatment. Unfortunately he didn't make it and died in November of that same year. It was not a good year. With all the rest of the stress of children and babies and custody going on with my son.
I waited until 2009 to start tx. I was excited about it too. When I found out I had Hep C I told the doctor I had caught Hep B at work and he said I could have caught it at the same time. Although when I was a teen I experimented 4 times with needles so it may have been that. I didn't take treatment for Hep B because I didn't know I had it. I just felt really tired and had the diarrhea and figured it was the flu. I called in sick for a few days. Its hard to remember exactly how long I was sick. That was in the winter of 91-92. In the spring my doctor said I had a history of Hep B, so my body had done its work and killed that on its own. I was lucky. I really cant be sure of how I caught the Hep C, but it doesn't matter to me.
When I started the tx I was so positive of doing it I just brought the shots and pills home with me. That night I got the shot all ready and was holding it to my stomach and paused .. I just sat there holding it and I just couldn't put it in. I started whining and my son came to me and did it for me. He was my hero, and after that I just did it without any problem. I had never stuck myself before you see.
I didn't get sick or feel much of anything at first. Just slowly I got tireder and tireder, loss some hair, started itching and lost my appetite. I couldn't hike anymore because I had been hiking 3 to 4 miles up and down steep hills. I tried it but I lost my breath and my heart went crazy beating really fast. My hemoglobin levels were were falling as they do and were down to 9.4 and they pulled me off tx. I asked about the emergency drugs, all I got for an answer was "who said anything about that"? The nurse acted all scared and said we don't want to have to do a transfusion. Then she left the room and came back in and said they were pulling me off for 2 weeks. This all happened in week 18, so I finished 18 shots. I was clear though so I thought that was good.
I moved to Florida then and sought other places to go to. After I had called my old medical facility and asked what the doctor said and they wouldn't answer me. I was confused again, so I just figured since I had cleared, maybe I would be lucky and it would be enough. I decided to use a heptologist I had heard of in Florida and talked to him and he said whenever your ready. Since my friend had success with him, and is SVR now, I thought I better try this one. This Doc said it was stupid for them to pull me off and I liked that down to earth attitude of his.
I'm going back on the 26th of May. I don't know if I will start that day or not. My blood test results showed normal enzymes, but over 12 million viral load, where before it had never gone over 400 thousand.
Since my biopsy in 09 was grade 2 stage 2-3, the hepatologist said I had possibly progressed to 3-4. I don't know if that's possible in such a short time. I doubt it, but he did say possibly. So now my plan is to treat again and kill the dragon for good.
In summary, I feel that I waited too long, because I had so much on my plate when I found out. But there is nothing I could have done before my husband passed. Those 2 months were all I had left with him and I sure am glad I wasn't on tx. After that I should have started sooner, but the whole deal was really hard on me and I was half insane already from life as it were.
OK that's my story hope it didn't depress you.
Don't worry about me I'm a fighter from way back and I'm a tough ol chicken too.
Hugs, smile, and love!!!
Helena
I waited until 2009 to start tx. I was excited about it too. When I found out I had Hep C I told the doctor I had caught Hep B at work and he said I could have caught it at the same time. Although when I was a teen I experimented 4 times with needles so it may have been that. I didn't take treatment for Hep B because I didn't know I had it. I just felt really tired and had the diarrhea and figured it was the flu. I called in sick for a few days. Its hard to remember exactly how long I was sick. That was in the winter of 91-92. In the spring my doctor said I had a history of Hep B, so my body had done its work and killed that on its own. I was lucky. I really cant be sure of how I caught the Hep C, but it doesn't matter to me.
When I started the tx I was so positive of doing it I just brought the shots and pills home with me. That night I got the shot all ready and was holding it to my stomach and paused .. I just sat there holding it and I just couldn't put it in. I started whining and my son came to me and did it for me. He was my hero, and after that I just did it without any problem. I had never stuck myself before you see.
I didn't get sick or feel much of anything at first. Just slowly I got tireder and tireder, loss some hair, started itching and lost my appetite. I couldn't hike anymore because I had been hiking 3 to 4 miles up and down steep hills. I tried it but I lost my breath and my heart went crazy beating really fast. My hemoglobin levels were were falling as they do and were down to 9.4 and they pulled me off tx. I asked about the emergency drugs, all I got for an answer was "who said anything about that"? The nurse acted all scared and said we don't want to have to do a transfusion. Then she left the room and came back in and said they were pulling me off for 2 weeks. This all happened in week 18, so I finished 18 shots. I was clear though so I thought that was good.
I moved to Florida then and sought other places to go to. After I had called my old medical facility and asked what the doctor said and they wouldn't answer me. I was confused again, so I just figured since I had cleared, maybe I would be lucky and it would be enough. I decided to use a heptologist I had heard of in Florida and talked to him and he said whenever your ready. Since my friend had success with him, and is SVR now, I thought I better try this one. This Doc said it was stupid for them to pull me off and I liked that down to earth attitude of his.
I'm going back on the 26th of May. I don't know if I will start that day or not. My blood test results showed normal enzymes, but over 12 million viral load, where before it had never gone over 400 thousand.
Since my biopsy in 09 was grade 2 stage 2-3, the hepatologist said I had possibly progressed to 3-4. I don't know if that's possible in such a short time. I doubt it, but he did say possibly. So now my plan is to treat again and kill the dragon for good.
In summary, I feel that I waited too long, because I had so much on my plate when I found out. But there is nothing I could have done before my husband passed. Those 2 months were all I had left with him and I sure am glad I wasn't on tx. After that I should have started sooner, but the whole deal was really hard on me and I was half insane already from life as it were.
OK that's my story hope it didn't depress you.
Don't worry about me I'm a fighter from way back and I'm a tough ol chicken too.
Hugs, smile, and love!!!
Helena
Friday, April 23, 2010
carrying around a dragon for almost 30 years...Dan
I served in the US Army in the early 1970’s when I was honorably discharged after 6 years with a disability rating of 30% and a sleeping killer that I was not aware of for another 14 years. Let me rephrase that; I knew something was wrong but no one could identify and name it until many years later.
In 1973 I was severely injured when a drunk driver ran a red light and T-boned the car I was driving on the driver’s side. I suffered a massive hemo-pneumo thorax, ruptured esophagus, ruptured spleen, ruptured diaphragm, lacerated liver, multiple fractures, a 3 centimeter tear to my right ventricle and a separated pelvis. I pumped blood into my lungs through the ventricle tear for 3 days. In that time frame and through my second open chest surgery I took 196 units of blood and exhausted the supply of three counties blood banks.
After I left the service I found myself frequently tired, often depressed, constantly aching, nauseated and slightly feverish. I had pains in my abdomen, pains in my joints, and pains in my legs. My quality of life was lower than I had ever known and no amount of tests, observations or treatments ever seemed to improve my quality of life or provide any answers. I had my perfectly good appendix removed to try and stop the stomach pains. I found out my appendix was still good by the lab results. I had been a corpsman and I knew how to read a lab report.
In 1984 out of frustration and with medical records showing I had been treated for non-A, non-B hepatitis I filed for service connection with the Veterans Administration. I was denied after several months of waiting. I was given no reason for the denial other than evidence was not provided to support my claim.
I continued to be sick off and on with an assortment of symptoms and no one was ever able to determine the cause of my ailments. I was told by several doctors that I needed to get over my trauma injuries and learn to live with myself. I was given medication after medication but nothing ever seemed to work to clear up my ailments. VA doctors kept trying to refer me to psychiatry. I was going in circles. Tests and evaluations, medication and referrals, more tests, more evaluations, more referrals, back for more tests.
Sick and tired of being sick and tired I quit going to doctors. My symptoms did not stop; I just stopped seeking any answers.
After being sick and vomiting with stomach pains I sought help one more time and found a VA doctor who ran a test on me for Hepatitis C. It was late 1990 or early 1991. I don’t recall exactly when. Now I finally had a name for the beast that was making my life miserable. My viral count was less than 1 million, my liver was not swollen and the biopsy showed no signs of cirrhosis. We talked about treatment options and they did not sound that good so I declined.
I followed up with that doctor until 1999 when I moved away from that hospital. I moved to the Midwest in 2001.
I sought out care at a VA hospital in Illinois. I was told at this VAMC that they had no treatment plans for drug addicts with Hepatitis C and if I wanted that kind of care I would have to go elsewhere. I was only at that hospital for an annual blood draw to check my liver enzymes as I had learned to do from the other VAMC where my good doctor was still practicing. I let this new doctor know that I was not a drug addict and in fact I had a security clearance and I took random drug screens whenever asked to support my job as a government contractor.
My enzymes were up and so was my viral load. I was told by the mid-west VAMC that treatment was expensive and I would need to be carefully screened before that option ‘might’ be offered to me. I chose not to be screened.
I sought out and found a new civilian doctor, outside of the VAMC. It was a good choice because I found a good doctor who took good care of me. We discussed treatment and all of my options. I went back to the VAMC and I was told again that I might not be offered treatment for Hep C and that even if I was offered the treatment I would have to do the whole 48 weeks and if I quit or had to stop that was it, my treatment options would be back to zero again with no chance to try again. I returned to my civilian doctor hastily.
I took the treatment for 48 weeks with no help from the VAMC whatsoever. As a geno 1A my chances of clearing the virus were about 50\50. With the help of other vets at HCvets.com I filed for service connection with new evidence and a new attitude. After 16 months I was granted 10% for hepatitis C.
It’s not very much of a price to pay for carrying around a dragon for almost 30 years. Not when all of the evidence (no use of universal precautions, a lot of exposure to other peoples blood, needle sticks and all of those transfusions, and let’s not forget the multi-unit jet injectors) was so easy to gather and present directly out of my medical files and personnel jacket.
My appeal for a minimum of 20% is still pending.
In 1973 I was severely injured when a drunk driver ran a red light and T-boned the car I was driving on the driver’s side. I suffered a massive hemo-pneumo thorax, ruptured esophagus, ruptured spleen, ruptured diaphragm, lacerated liver, multiple fractures, a 3 centimeter tear to my right ventricle and a separated pelvis. I pumped blood into my lungs through the ventricle tear for 3 days. In that time frame and through my second open chest surgery I took 196 units of blood and exhausted the supply of three counties blood banks.
After I left the service I found myself frequently tired, often depressed, constantly aching, nauseated and slightly feverish. I had pains in my abdomen, pains in my joints, and pains in my legs. My quality of life was lower than I had ever known and no amount of tests, observations or treatments ever seemed to improve my quality of life or provide any answers. I had my perfectly good appendix removed to try and stop the stomach pains. I found out my appendix was still good by the lab results. I had been a corpsman and I knew how to read a lab report.
In 1984 out of frustration and with medical records showing I had been treated for non-A, non-B hepatitis I filed for service connection with the Veterans Administration. I was denied after several months of waiting. I was given no reason for the denial other than evidence was not provided to support my claim.
I continued to be sick off and on with an assortment of symptoms and no one was ever able to determine the cause of my ailments. I was told by several doctors that I needed to get over my trauma injuries and learn to live with myself. I was given medication after medication but nothing ever seemed to work to clear up my ailments. VA doctors kept trying to refer me to psychiatry. I was going in circles. Tests and evaluations, medication and referrals, more tests, more evaluations, more referrals, back for more tests.
Sick and tired of being sick and tired I quit going to doctors. My symptoms did not stop; I just stopped seeking any answers.
After being sick and vomiting with stomach pains I sought help one more time and found a VA doctor who ran a test on me for Hepatitis C. It was late 1990 or early 1991. I don’t recall exactly when. Now I finally had a name for the beast that was making my life miserable. My viral count was less than 1 million, my liver was not swollen and the biopsy showed no signs of cirrhosis. We talked about treatment options and they did not sound that good so I declined.
I followed up with that doctor until 1999 when I moved away from that hospital. I moved to the Midwest in 2001.
I sought out care at a VA hospital in Illinois. I was told at this VAMC that they had no treatment plans for drug addicts with Hepatitis C and if I wanted that kind of care I would have to go elsewhere. I was only at that hospital for an annual blood draw to check my liver enzymes as I had learned to do from the other VAMC where my good doctor was still practicing. I let this new doctor know that I was not a drug addict and in fact I had a security clearance and I took random drug screens whenever asked to support my job as a government contractor.
My enzymes were up and so was my viral load. I was told by the mid-west VAMC that treatment was expensive and I would need to be carefully screened before that option ‘might’ be offered to me. I chose not to be screened.
I sought out and found a new civilian doctor, outside of the VAMC. It was a good choice because I found a good doctor who took good care of me. We discussed treatment and all of my options. I went back to the VAMC and I was told again that I might not be offered treatment for Hep C and that even if I was offered the treatment I would have to do the whole 48 weeks and if I quit or had to stop that was it, my treatment options would be back to zero again with no chance to try again. I returned to my civilian doctor hastily.
I took the treatment for 48 weeks with no help from the VAMC whatsoever. As a geno 1A my chances of clearing the virus were about 50\50. With the help of other vets at HCvets.com I filed for service connection with new evidence and a new attitude. After 16 months I was granted 10% for hepatitis C.
It’s not very much of a price to pay for carrying around a dragon for almost 30 years. Not when all of the evidence (no use of universal precautions, a lot of exposure to other peoples blood, needle sticks and all of those transfusions, and let’s not forget the multi-unit jet injectors) was so easy to gather and present directly out of my medical files and personnel jacket.
My appeal for a minimum of 20% is still pending.
Thursday, April 22, 2010
Never Give Up Hope!!!!! An Inspirational Story by Ronnie
I just got back from an NA meeting. I got Hepatitis C from intravenous drug use (Heroin). I started using drugs when I was 12 yrs old. My introduction to Heroin was when I was 19 yrs of age. In 1997 I used a needle after my twin sister did (the first time I had done this). I knew she had Hep C. She was diagnosed with this curse of an illness in 1992. When the doctors first gave a name to this strain of Hepatitis. Before then, as you must know, it was referred to as NonA-NonB. Well, in my trusting nature I believed my sister had bleached the needle, however she didn't, and I foolishly trusted her. I don't blame her. I take full responsibility for my actions. Anyway, I saw a Hepatologist in 1999, and I had a biopsy done. Stage 1..genotype 1a. Though i had no symptoms of the disease he started me on Interferon and Ribavirin. 3 shots a week and 4 pills daily. I went through treatment while working and being a single mother. It was not easy,to say the least. My side effects were horrible. "Flu-like" symptoms,i think, is hardly an adequate term for what i went through. I was extremely sick,not from Hep C,but from tx. I was hospitalized 2 times with pneumonia and twice with kidney infections,dehydration came along with the 4 hospitalizations. This was over a course of 6 months. During my last stay in the hospital my viral load count went from 19mil to 13 mil. The doctor pulled me off the treatment. My immune system broke down completely. I did go on an anti-depressant before i started tx. The first side effect of tx. is not a medical one, but it is a psychological one.....Depression..suicidal thoughts. I went Thur both ,and i did attempt to kill myself once. Thank God it wasn't my time. So,now I'm pulled off treatment and i discover i have hypothyroidism, neuropathy,and osteoarthritis. I attribute these illness's to treatment,not Hep C. I wait one year..try to build up my immune system,and in 2001 i give tx. another try. This time i was able to take some time off of work..a few weeks here and there and again went through it as a single parent. My husband was in the last stage of brain cancer at the time. He was unable to parent. On the second round of tx...still the Interferon 3 shots daily,and the Riba, I lasted 5 months before I was pulled from tx for the same reasons as the first time. This time when the doctor pulled me I cried like a baby, as my viral count was 134, however he felt my life was being compromised. I did not goon an anti-depressant right away and felt like I was lost in a tunnel of depression and there was no light at the end of the tunnel. I could not get out of bed for days at a time, nor could I eat or sleep well. Similar experience with my 1st tx. Fatigue....YES!
I then went on the study for intergen..lasted one month. It was absolutely brutal on my body and mind.
Betty, I used to sugar coat treatment. I do not do that anymore. Our bodies naturally have a certain amount of Interferon in them. The amount that is in tx. is TOXIC....pure poison. It is up to each individual to decide whether tx. is the way to go for them. All react differently. My suggestion to those who have not gone through treatment before is to see a Hepatologist they trust, do some research on their own, and really be informed about treatment before undergoing it. I am now 54 yrs. old. I will never go through any treatment for Hep C again, except for a few supplements I do take.
I regret going through any treatment in the first place. In retrospect, I regret putting the needle in my arm. However I did and it is for me to live with. I do a lot of research on Hep C, and I belong to several Hepatitis C Awareness Groups through-out the Country. I advocate for a "cure" at this point, a vaccine, and I try to provide info, support, and friendship to all that I come in contact with. In the rooms of NA, many..so many people have Hep C. I believe their is a cure for HCV,I also believe that the Pharmaceutical Companies are making a mint off of those infected with the illness, and therefore have not disclosed this information. This is only my opinion after doing much research and speaking with many well-learned doctors who specialize in Hep C. The doctors are being paid very well also. I feel that I was used as a guinea pig as far as tx. goes.
I live my life to the fullest that I possibly can on a daily basis. I exercise, eat properly, rest when needed, and sleep as needed. I do not allow stress into my life....ever! I had let stress into my life and I realize that only made the Hep C progress faster. I do not let HCV define me, enslave me, or victimize me. I have been drug free since 1997 :).
As of last biopsy I am approaching Stage 3. I deal with this illness the best that I can. You know it's not my Liver that is giving me so many problems now. It is the neuropathy..more so the osteo. As I've said before to people I speak with...treatment, for me is the gift that keeps on giving.
So, this is my story up to this moment in my life. For those who read this I am not saying not to go through treatment, I am saying please be informed, and if you do not like the doctor that you are seeing, FIRE him/her. The doctor is working for you and getting very well paid for it. If you want a second opinion by all means get one.
Ok Betty...now I am tired lol..so I will say goodnight to you and to all that read this.
As I have posted many times through the yrs. that I have been at Seekers...ALL Stay strong, never give in, never give up, keep the faith, always have HOPE, do not drink alcohol, do not take any drug without first consulting your doctor; that includes any herbal supplement, and live your lives to the fullest that you can. Remember the Liver metabolizes all that we put into our body....
God Bless and Peace to all...Ronnie
I then went on the study for intergen..lasted one month. It was absolutely brutal on my body and mind.
Betty, I used to sugar coat treatment. I do not do that anymore. Our bodies naturally have a certain amount of Interferon in them. The amount that is in tx. is TOXIC....pure poison. It is up to each individual to decide whether tx. is the way to go for them. All react differently. My suggestion to those who have not gone through treatment before is to see a Hepatologist they trust, do some research on their own, and really be informed about treatment before undergoing it. I am now 54 yrs. old. I will never go through any treatment for Hep C again, except for a few supplements I do take.
I regret going through any treatment in the first place. In retrospect, I regret putting the needle in my arm. However I did and it is for me to live with. I do a lot of research on Hep C, and I belong to several Hepatitis C Awareness Groups through-out the Country. I advocate for a "cure" at this point, a vaccine, and I try to provide info, support, and friendship to all that I come in contact with. In the rooms of NA, many..so many people have Hep C. I believe their is a cure for HCV,I also believe that the Pharmaceutical Companies are making a mint off of those infected with the illness, and therefore have not disclosed this information. This is only my opinion after doing much research and speaking with many well-learned doctors who specialize in Hep C. The doctors are being paid very well also. I feel that I was used as a guinea pig as far as tx. goes.
I live my life to the fullest that I possibly can on a daily basis. I exercise, eat properly, rest when needed, and sleep as needed. I do not allow stress into my life....ever! I had let stress into my life and I realize that only made the Hep C progress faster. I do not let HCV define me, enslave me, or victimize me. I have been drug free since 1997 :).
As of last biopsy I am approaching Stage 3. I deal with this illness the best that I can. You know it's not my Liver that is giving me so many problems now. It is the neuropathy..more so the osteo. As I've said before to people I speak with...treatment, for me is the gift that keeps on giving.
So, this is my story up to this moment in my life. For those who read this I am not saying not to go through treatment, I am saying please be informed, and if you do not like the doctor that you are seeing, FIRE him/her. The doctor is working for you and getting very well paid for it. If you want a second opinion by all means get one.
Ok Betty...now I am tired lol..so I will say goodnight to you and to all that read this.
As I have posted many times through the yrs. that I have been at Seekers...ALL Stay strong, never give in, never give up, keep the faith, always have HOPE, do not drink alcohol, do not take any drug without first consulting your doctor; that includes any herbal supplement, and live your lives to the fullest that you can. Remember the Liver metabolizes all that we put into our body....
God Bless and Peace to all...Ronnie
Stay in the Fight.. Don’t Give Up on your Liver!! Summer's Story
HCV and Cirrhosis have been the main focus of my life. In l980 my mother was diagnosed with cirrhosis of the liver. In the early 90”s they informed her that they had found a new strain of Hepatitis; it was called “C”. They gave her interferon for a time, but it made her so sick she didn’t want to take it anymore. I only wish that we would have understood what the outcome could bring by not treating this. In 2004, my mother died of liver cancer. I stayed with her for two years, watching her slowing deteriorate. She had two surgeries; trying to remove the cancer, but it was too late, it had spread. This was the most painful time in my life, seeing the mother I have, that was always so full of life and extremely active, die in this way. Needless to say I was so depressed, couldn’t get out of bed. Finally went to the doctor for my depression, and was informed that I had Hep C since 2002. They had over looked the test results. Talk about a BLOW! Losing my mother, then my other love, (my dog) and finding out I had Hep C, geno 1, all in the same month, sent me into the gloom of life. I told no one. Kept all my pain inside. The doctor told me that I needed to look into treatment, NOW! Of course, every doctor I went to irritated me because of, what seemed to be their lack of knowledge of the virus. One hospital said that they would treat me in a study, (of course, I wanted no part of being a lab rat). Anger was taking over my judgment, of what was real. I just wanted it to go away. Mentally knowing I had this and the thought of the same thing happening to me as did my mother, took me back to the doctor. This was 2007. I went to a Gastro doctor, he put me on SOC. He also told me that he had not treated many with HCV. Another, “OH BOY” moment. I went ahead and started the SOC, with a good attitude, that I would get through this and not let myself feel bad. Well….I gave it a good fight. After getting started, he checked me at 6wks; I had over a 2 log drop. So I continued. At the 24 wk point, checked again, and was back up to 2 million. He kept me on the meds for the full 48wks. At the end, he shook my hand and said,” sorry, maybe within the next 5 years they will have a new treatment”. I was a non responder. I found out through my brother the next week that his boss had gone into clinical trial study. He had just got the results of his 6 month post tx. He was SVR!!! I immediately emailed the study, (my luck had changed). I had gotten an email back just after I sent it. They wanted me to send all paperwork. They accepted me into the boceprevir study. I was at ND, by wk 12, and stayed that way through the 48 wks. The side effects were a little more intense this time around. I wasn’t sure if it was because only a month before I had just went though 48 wks of SOC, now back in the fight, or if it was because of the boceprevir. The fatigue, of course, was there pretty much all of the time. I also developed anemia. They had me on procrit shots, average, once a week. Finding out now, I was lucky in that respect too. I also had to take Neupogen, twice weekly for the last 3 months of the tx. All was do able though. I did loose about 60% of my hair. I’m now at 3 wks post tx and waiting for my results of my 4 wk post labs. I have a great feeling about this. I know that there is a chance that I could be disappointed, but so far I feel very positive. I would tell anyone that they should never give up, stay in the fight, the best way you can. Don’t give up on your liver. What this virus can do to it is nothing nice.
My thoughts and well wishes are for all that are fighting, or know someone fighting this battle.
Summer
My thoughts and well wishes are for all that are fighting, or know someone fighting this battle.
Summer
Wednesday, April 21, 2010
Will Not Be Put Down For My Infection.......Harry
I served in the Army 68-69 - wasn't diagnosed hep positive until 1992. In the mean time my wife was diagnosed. As it turned out, same critter I had. She caught it from me. Although it is rare to be transmitted sexually, she used to clean and dress my knicks and scraps. Usually bloody, hazard of the job at the time. As for me I only had two risks. The jet gun (MUNJI) and the transfusions I received after being wounded. The wife's only risk was me. Can't begin to describe the guilt that was felt or the pain it caused; knowing I was the source of her being infected. The only good thing after helping her thru treatment was she cleared. I didn't clear so I still carry the dragon with me. For many this would be cause for the stigma that surrounds hcv, but I look at it as an opportunity to educate others. I will not let a doctor or nurse touch me without letting them know nor any of my co-workers.
I look at it this way, it's my bug and I'm not sharing with anyone. I did nothing wrong as many others and will not be put down for my infection.
Thanks for your time,
Harry Hooks
Director, HCVets.com
I look at it this way, it's my bug and I'm not sharing with anyone. I did nothing wrong as many others and will not be put down for my infection.
Thanks for your time,
Harry Hooks
Director, HCVets.com
I will edit this when I'm 85 or 90......Miles
I met Hepatitis C in 1976 through a blood transfusion. The symptoms were there in the 80s but the doctors called it Chronic Fatigue Syndrome. I finally found what I really had in 1992 and went on Interferon but was a non-responder.
The doctors say that I cannot take anything with Interferon again because of the way it attacked my system.
So, I will wait for a better treatment to come along. I still have a high viral load but all other liver tests come back fine.
I went through the sides, going from denial, to depression, then to isolation, with no help from my doctor. I did not know anyone else who was going through it. I thought there had to be a better way... So, in Nov. of 1998 I started building our Seekers Hepatitis C support forum at Delphi.com.
I did not want others to go through what I went through without any support at all.
Our forum was active for almost 11 years and thousands were helped by so many great supporting people that were walking the same road and gave their time and knowledge to anyone who asked.
I planted a seed and watched it grow. I guess that was my real goal.
I keep our forum open in case any ole timers happen to drop in to say hello.
After 34 years living with hepatitis c without treatment I found that drinking extra water and getting about 10 hours sleep each night to let my liver have more time to do its work has helped me keep going.
I am now an old man with many fond memories of good friends that have passed through my life because of this disease, so this journey has had it's bright points. Thinking positive and enjoying each day as well as we can, helps to smooth out this bumpy road we travel.
I will edit this when I'm 85 or 90..........Until then, may good health come to all who read this.
Miles Lewis
(Seeker)
The doctors say that I cannot take anything with Interferon again because of the way it attacked my system.
So, I will wait for a better treatment to come along. I still have a high viral load but all other liver tests come back fine.
I went through the sides, going from denial, to depression, then to isolation, with no help from my doctor. I did not know anyone else who was going through it. I thought there had to be a better way... So, in Nov. of 1998 I started building our Seekers Hepatitis C support forum at Delphi.com.
I did not want others to go through what I went through without any support at all.
Our forum was active for almost 11 years and thousands were helped by so many great supporting people that were walking the same road and gave their time and knowledge to anyone who asked.
I planted a seed and watched it grow. I guess that was my real goal.
I keep our forum open in case any ole timers happen to drop in to say hello.
After 34 years living with hepatitis c without treatment I found that drinking extra water and getting about 10 hours sleep each night to let my liver have more time to do its work has helped me keep going.
I am now an old man with many fond memories of good friends that have passed through my life because of this disease, so this journey has had it's bright points. Thinking positive and enjoying each day as well as we can, helps to smooth out this bumpy road we travel.
I will edit this when I'm 85 or 90..........Until then, may good health come to all who read this.
Miles Lewis
(Seeker)
Tuesday, April 20, 2010
My Life is Falling Apart
I was diagnosed with Hep C 5 long years ago. I had interferon treatments for 3 long years and it has been a hellish ride for me and my family. I had end stage 4 cirrhosis. After 3 years of getting shots 3 times a day, I finally was upgraded to stage 2 fibrosis and believed that I was getting better. A couple of weeks ago I found out I now have COPD. All of this is starting to take an emotional toll on me to no end. I think I got my Hep C in the Marine Corps in 1973. We were injected with air guns to receive our injections which I never saw them clean after each use.
I now have grandchildren, and my daughter is having a baby in July; my future is up in the air. Please help me if you can. I feel as though I am slipping through this mess alone. It is hard to relate this to my family as I feel my life is falling apart. I would like to thank you for websites like this; please help if you can.
Thank you. You can reach me through my profile email and thank you for your time and understanding
I now have grandchildren, and my daughter is having a baby in July; my future is up in the air. Please help me if you can. I feel as though I am slipping through this mess alone. It is hard to relate this to my family as I feel my life is falling apart. I would like to thank you for websites like this; please help if you can.
Thank you. You can reach me through my profile email and thank you for your time and understanding
Sunday, April 18, 2010
I am Blessed.......
I am 47 years old. I was diagnosed in '94. Did monotherapy of intron A in '95. Cleared but relapsed. I was in clinical trials for the Rebatron in '96, which was when ribovarin was being tested. Again cleared the virus only to relapse. In March 2007 until May 2009, I treated with Pegasys and ribovarin...for a long 117 weeks. double dosing Pegasys and 1 1/2 times the weight based ribovarin and again relapsed. Due to chronic Hep C, I have endured many hardships.. Financial, emotional, and physical. As happens to many, it has brought me to my knees, to trust in God...to seek Him every day..By reading His Word, and prayer. I am grateful. This chronic illness has made me a more compassionate person, given me a deeper empathy for all those sick and suffering, no matter what disease one has, be it physical or mental. There are so many lessons to be learned in this life...and suffering for me seems to be the vehicle for enlightenment. This lonely path has helped me to become the person I was meant to be. One must know/understand darkness to appreciate The Light. What remains a mystery now, I believe will be made known when I reach heaven. I do believe that everything has a purpose. To have a virus that carries such stigma. To be somewhat of an outcast in this world has been very humbling, and one in which has drawn me ever so closer to my Creator, my Father in Heaven and my Lord and Savior, Jesus Christ. Today, I am basically, through natural remedies, trying to build up my immune system and stick to a liver friendly diet..And exercise by stretching and walking when able...which is more often than not. I thank God for what I do have...and one of the things to have come out of this, is the friendships with others who are also living with this illness. We are a family. I never could have imagined that I would have friends across the globe...who love, care and truly understand me. I am blessed.
Saturday, April 17, 2010
Quote from ~Martin Luther King Jr.~
Faith is taking the first step even when you don't see the whole staircase.
~Martin Luther King Jr.~
~Martin Luther King Jr.~
Friday, April 16, 2010
Rob's Story
Here's one for ya Betty. I aquired HCV as a corpsman back in the Vietnam era. By a needle sticks. I received 10% disability for HCV after fighting the VA for 6 years. I just received 0% rating for cirrhosis. As they say having HCV that long I should have cirrhosis. Also saying that I only have mild pain. Well the VA at there own hospital in SLC UT shows I have varices lesions and uncontrolled GERD all associated with HCV.Verified by ct scan on two separate occasions. According to their procedures I should be rated at 100% disabled. But they didn't have any of the information that I just described. Because it all came to light after 2004. It appears they can't check computers from one part of the Government to another I guess. I sent the VA the information. As I always save copies just for situations like this. I sent it by fax and certified mail. Now we will see if they are true to their word and raise my percentage. They tell me it takes two weeks to get the information to the right people. So to be safe I sent copies to Senator Akaka of Hawaii as he is head of the veterans subcommittee. As well as my Sen Orrin Hatch of UT. So if I get denied someone should know.I don't know if the VA can get out of this but I will let you know. Good luck on your ventures I wish I were strong enough to help like they say I am. Rob
April 11, 2010 1:39 PM
April 11, 2010 1:39 PM
Caring Ambassadors Hepatitis C Program - Randy Dietrich
"My name is Randy Dietrich. I have a beautiful family, wonderful friends, a great job, and perfect health - or so I thought. In January 1999, a routine annual physical examination resulted in a shocking diagnosis - I had hepatitis C. After the initial reactions of panic, denial, and fear, I set out to learn as much as possible about the disease and the various treatment options. Much of the information, however, was either incomplete or contradictory, no doubt due to the fact that the virus causing the disease was only recently identified. It was then that I realized that others with hepatitis C were just like me -- confused, worried, and frustrated. When I couldn't get all of the information I wanted about hepatitis C from the health professionals with whom I spoke, I realized I would have to do my own information search. I also wanted to share what I learned with others living with the disease, and with the healthcare profession at large.
I went to my employer, Jim Possehl, president of Republic Financial Corporation, and together we brainstormed the challenge that lay ahead. In our search for answers, we jointly founded and funded the Caring Ambassadors Hepatitis C Program. I chose to research my options and find answers -- not only for myself, but for the millions of other people world-wide who are also living with the disease. I knew that in the short term I could do things to improve my health while on this search. My regiment to start healing my body has been organic foods, juicing, no alcohol, no coffee, no refined sugar, no red meat, and a positive outlook. I am working with a chiropractor, an acupuncturist, and other bodywork professionals, in addition to keeping up moderate exercise. Besides these common-sense measures for a healthy liver, what else should I be doing to allay the virus?
One of my strong beliefs is that knowledge empowers. Only when you have all the facts can you make an informed decision. I think that disease so they can take charge of their own health. We formed the program to make a real difference for people living with hepatitis C. as we go forward, the ways we can make these "real differences" will become more apparent to us. I believe that by helping others, I will help myself, and that, by helping myself, I will help others. We are all in this together, and together we will climb the mountain that cannot be climbed alone."
10 Truths I Believe to be Self-Evident
My journey with hepatitis C has been one of discovery and learning. There is much we do not yet know about hepatitis C. However, in reflecting on the major lessons I've learned in my journey with hepatitis C, I have come up with a list of "truths." Borrowing from the words of Thomas Jefferson in The Declaration of Independence, I hold these truths about living with hepatitis C to be self-evident.
1. It's the immune system!
The 1992 Clinton-Gore campaign made the saying, "It's the economy, stupid." part of modern American culture. Not to be insulting, but when it comes to chronic hepatitis C, it's the immune system, stupid. The immune system is the body's defense against viruses. We know the immune system is responsible for clearing the hepatitis C virus from the body. We also know that much of the liver damage that occurs with chronic hepatitis C is mediated by the immune system. Therefore, it follows that anything we can do to enhance the function of the immune system is potentially helpful. Conversely, anything that impairs the immune system is potentially harmful. Many of the other "truths" I include in this list ultimately relate back to the immune system.
I'd like to add a note of caution to the statement I just made about doing anything you can to improve your immune function. It is very easy to fall into the pattern of thinking that if a little of something is good, then a lot must be even better! However, this type of thinking can get you into trouble. As discussed earlier, excessive vitamins, nutritional supplements, herbs, and even exercise can potentially do more harm than good. If I had to give one word of advice to others with chronic hepatitis C, it would be "moderation."
2. You are what you eat.
This is a fact of life. With the help of the liver, our bodies transform what we eat and drink into the very substance of our bodies. While we may want to think what we eat doesn't matter, logic and basic biology tell us otherwise.
3. Stress management is important.
Scientists have known for many years that stress depresses immune function. As noted in number 1, anything that interferes with immune function is potentially detrimental to people with chronic hepatitis C. Recognizing and managing your stressors is an important way to influence your course with hepatitis C.
4. Protect your liver!
The liver is a vital organ. It processes nearly every substance that enters the body. The liver is the primary target of the hepatitis C virus. Anything you can do to decrease the demands on the liver while it is under siege from HCV is potentially helpful. You can protect your liver by eliminating alcohol from your diet, avoiding toxins such as smoke, pollutants, and chemicals, limiting your intake of complex chemicals such as medications and supplements, and eating a healthy diet.
5. Time is on your side.
For the vast majority of people, chronic hepatitis C is a very slowly progressive disease. With the exception of those people who are diagnosed with advanced cirrhosis, hepatitis C is not an immediate threat to your life. Moreover, for most people with HCV, it will never be a threat to life. In other words, most people infected with HCV will not die of the virus, but rather with the virus. Please know that I am not minimizing the challenges of living with hepatitis C. I am trying to point out that most people with hepatitis C have time to make choices about how to manage their disease and change their lifestyle, and that hepatitis C is not an automatic death sentence.
6. You are as you think.
As with all life experiences, your outlook, perceptions, and attitudes influence your experience with hepatitis C. No one wants to get hepatitis C. But once you have the virus, you are free to choose how you will react to having it. Many emotions can come into play when a person is first diagnosed including anger, fear, helplessness, shame, and others. But after the initial period of adjustment, it is up to you how you choose to live with your diagnosis. Persistent anger and feelings of helplessness may make living with HCV quite difficult. A positive outlook and hope can make daily life much easier and more enjoyable. Keep in mind that no feeling in and of itself is "bad" or "good." What gives your feelings their importance is how they affect your daily life, and how they contribute or detract from your sense of well-being.
7. Body and mind work hand-in-hand.
One of the most amazing features of human beings is the intricate and inseparable interactions between the body and the mind. Physical symptoms such as headaches, sleep disturbances, and changes in appetite that accompany depression and stress clearly demonstrate the fundamental relationship between the body and the mind. These interactions are ever-present in all people. Therefore, practices that help us achieve and maintain a healthy balance between the body and mind have the potential to improve both our physical and mental sense of wellness. A variety of practices can enhance the health of our mind-body relationship including exercise, healthy body weight, meditation, prayer, visualization, and many others.
8. Information can be healing.
Hepatitis C is a serious illness. The overwhelming reaction for most people when they are first diagnosed is fear. We all fear the unknown. Fear is very stressful, and we know stress is unhealthy for the immune system. In my experience, the best antidote to fear is information. The more I learned about hepatitis C and my options, the less fear I had. In this way, information can be healing. However, be aware that there are many unsubstantiated claims about so-called "cures" for hepatitis C. The unregulated nature of the Internet sometimes makes it difficult to separate fact from fiction. I urge you to be cautious, and do everything you can to make sure the information you gather is credible.
On a related note, I offer another word of well-intended advice based on my personal experiences. While information can help us overcome our fears and regain a sense of control, too much of a "good" thing can erode these benefits. In other words, get the information you need to feel comfortable, but be careful not to let your quest for information about hepatitis C take over your life. As with all things, moderation is usually the best and healthiest course of action.
9. Support helps.
All of us struggle at different times with our inborn need for independence and our social, interdependent nature. But in times of stress, one of our greatest sources of relief is recognizing our need for others, and taking advantage of the supportive resources available to us. An illness can be an isolating experience, but you are most certainly not alone. There are many sources of support available such as family, friends, individual counseling, and Internet-based and in-person support groups. It is a personal strength, not a weakness, to recognize what you need and to seek help. Keep in mind, too, the positive effects of support run both ways. By that I mean, you may find great satisfaction in both receiving support and later, by offering your support to others. Giving and receiving are two sides of the same valuable coin.
10. There is no magic bullet.
It was largely wishful thinking, but when I was first diagnosed with hepatitis C, I thought I would be able to find a "magic bullet" - a medicine or treatment that would quickly and painlessly clear my body of the virus without interrupting my life or requiring me to make any changes. But the truth of the matter is that at least for now, there is no magic bullet, no quick and easy fix for hepatitis C. Furthermore, no single medical discipline has "the answer" when it comes to hepatitis C. Like most of the chronic illnesses that currently affect millions of people worldwide, living with hepatitis C may require us to make some difficult choices and changes. But the good news is that when you accept your responsibilities with this condition, you are rewarded by regaining a sense of control and self-determination with respect to your circumstance.
Dana Dietrich (Randy's Daughter)
"The Day I Found Out My Dad Was Ill"
"It was the day before my birthday, and I was out having a snowball fight, girls versus boys (we were beating them good). My dad pulled up in his car and honked, right as I turned to see him, a huge snowball hit me right in the face. Ouch! When I got into the car, my dad was on his cell phone. I waved good-bye to my friends and we left.
For about ten minutes, we drove in total silence, then my dad turned to me and said, "I have something I need to tell you.
"Right off it was bad. He went on, "About a month ago, I took a new kind of blood test and found out that I have hepatitis C, it is a disease that harms the liver. And I believe that if I go on this special diet, I will get better" I was totally shocked, I mean, my dad, my perfect dad had hepatitis C. Then I thought of something else that he had said, "I will get better"! My dad is very strong and when he gets better, it will be the happiest day of my life."
Randy Dietrich is founder of the Caring Ambassadors Program Hepatitis C Program
CAP is proud to announce their 4th edition of Hepatitis C Choices
I went to my employer, Jim Possehl, president of Republic Financial Corporation, and together we brainstormed the challenge that lay ahead. In our search for answers, we jointly founded and funded the Caring Ambassadors Hepatitis C Program. I chose to research my options and find answers -- not only for myself, but for the millions of other people world-wide who are also living with the disease. I knew that in the short term I could do things to improve my health while on this search. My regiment to start healing my body has been organic foods, juicing, no alcohol, no coffee, no refined sugar, no red meat, and a positive outlook. I am working with a chiropractor, an acupuncturist, and other bodywork professionals, in addition to keeping up moderate exercise. Besides these common-sense measures for a healthy liver, what else should I be doing to allay the virus?
One of my strong beliefs is that knowledge empowers. Only when you have all the facts can you make an informed decision. I think that disease so they can take charge of their own health. We formed the program to make a real difference for people living with hepatitis C. as we go forward, the ways we can make these "real differences" will become more apparent to us. I believe that by helping others, I will help myself, and that, by helping myself, I will help others. We are all in this together, and together we will climb the mountain that cannot be climbed alone."
10 Truths I Believe to be Self-Evident
My journey with hepatitis C has been one of discovery and learning. There is much we do not yet know about hepatitis C. However, in reflecting on the major lessons I've learned in my journey with hepatitis C, I have come up with a list of "truths." Borrowing from the words of Thomas Jefferson in The Declaration of Independence, I hold these truths about living with hepatitis C to be self-evident.
1. It's the immune system!
The 1992 Clinton-Gore campaign made the saying, "It's the economy, stupid." part of modern American culture. Not to be insulting, but when it comes to chronic hepatitis C, it's the immune system, stupid. The immune system is the body's defense against viruses. We know the immune system is responsible for clearing the hepatitis C virus from the body. We also know that much of the liver damage that occurs with chronic hepatitis C is mediated by the immune system. Therefore, it follows that anything we can do to enhance the function of the immune system is potentially helpful. Conversely, anything that impairs the immune system is potentially harmful. Many of the other "truths" I include in this list ultimately relate back to the immune system.
I'd like to add a note of caution to the statement I just made about doing anything you can to improve your immune function. It is very easy to fall into the pattern of thinking that if a little of something is good, then a lot must be even better! However, this type of thinking can get you into trouble. As discussed earlier, excessive vitamins, nutritional supplements, herbs, and even exercise can potentially do more harm than good. If I had to give one word of advice to others with chronic hepatitis C, it would be "moderation."
2. You are what you eat.
This is a fact of life. With the help of the liver, our bodies transform what we eat and drink into the very substance of our bodies. While we may want to think what we eat doesn't matter, logic and basic biology tell us otherwise.
3. Stress management is important.
Scientists have known for many years that stress depresses immune function. As noted in number 1, anything that interferes with immune function is potentially detrimental to people with chronic hepatitis C. Recognizing and managing your stressors is an important way to influence your course with hepatitis C.
4. Protect your liver!
The liver is a vital organ. It processes nearly every substance that enters the body. The liver is the primary target of the hepatitis C virus. Anything you can do to decrease the demands on the liver while it is under siege from HCV is potentially helpful. You can protect your liver by eliminating alcohol from your diet, avoiding toxins such as smoke, pollutants, and chemicals, limiting your intake of complex chemicals such as medications and supplements, and eating a healthy diet.
5. Time is on your side.
For the vast majority of people, chronic hepatitis C is a very slowly progressive disease. With the exception of those people who are diagnosed with advanced cirrhosis, hepatitis C is not an immediate threat to your life. Moreover, for most people with HCV, it will never be a threat to life. In other words, most people infected with HCV will not die of the virus, but rather with the virus. Please know that I am not minimizing the challenges of living with hepatitis C. I am trying to point out that most people with hepatitis C have time to make choices about how to manage their disease and change their lifestyle, and that hepatitis C is not an automatic death sentence.
6. You are as you think.
As with all life experiences, your outlook, perceptions, and attitudes influence your experience with hepatitis C. No one wants to get hepatitis C. But once you have the virus, you are free to choose how you will react to having it. Many emotions can come into play when a person is first diagnosed including anger, fear, helplessness, shame, and others. But after the initial period of adjustment, it is up to you how you choose to live with your diagnosis. Persistent anger and feelings of helplessness may make living with HCV quite difficult. A positive outlook and hope can make daily life much easier and more enjoyable. Keep in mind that no feeling in and of itself is "bad" or "good." What gives your feelings their importance is how they affect your daily life, and how they contribute or detract from your sense of well-being.
7. Body and mind work hand-in-hand.
One of the most amazing features of human beings is the intricate and inseparable interactions between the body and the mind. Physical symptoms such as headaches, sleep disturbances, and changes in appetite that accompany depression and stress clearly demonstrate the fundamental relationship between the body and the mind. These interactions are ever-present in all people. Therefore, practices that help us achieve and maintain a healthy balance between the body and mind have the potential to improve both our physical and mental sense of wellness. A variety of practices can enhance the health of our mind-body relationship including exercise, healthy body weight, meditation, prayer, visualization, and many others.
8. Information can be healing.
Hepatitis C is a serious illness. The overwhelming reaction for most people when they are first diagnosed is fear. We all fear the unknown. Fear is very stressful, and we know stress is unhealthy for the immune system. In my experience, the best antidote to fear is information. The more I learned about hepatitis C and my options, the less fear I had. In this way, information can be healing. However, be aware that there are many unsubstantiated claims about so-called "cures" for hepatitis C. The unregulated nature of the Internet sometimes makes it difficult to separate fact from fiction. I urge you to be cautious, and do everything you can to make sure the information you gather is credible.
On a related note, I offer another word of well-intended advice based on my personal experiences. While information can help us overcome our fears and regain a sense of control, too much of a "good" thing can erode these benefits. In other words, get the information you need to feel comfortable, but be careful not to let your quest for information about hepatitis C take over your life. As with all things, moderation is usually the best and healthiest course of action.
9. Support helps.
All of us struggle at different times with our inborn need for independence and our social, interdependent nature. But in times of stress, one of our greatest sources of relief is recognizing our need for others, and taking advantage of the supportive resources available to us. An illness can be an isolating experience, but you are most certainly not alone. There are many sources of support available such as family, friends, individual counseling, and Internet-based and in-person support groups. It is a personal strength, not a weakness, to recognize what you need and to seek help. Keep in mind, too, the positive effects of support run both ways. By that I mean, you may find great satisfaction in both receiving support and later, by offering your support to others. Giving and receiving are two sides of the same valuable coin.
10. There is no magic bullet.
It was largely wishful thinking, but when I was first diagnosed with hepatitis C, I thought I would be able to find a "magic bullet" - a medicine or treatment that would quickly and painlessly clear my body of the virus without interrupting my life or requiring me to make any changes. But the truth of the matter is that at least for now, there is no magic bullet, no quick and easy fix for hepatitis C. Furthermore, no single medical discipline has "the answer" when it comes to hepatitis C. Like most of the chronic illnesses that currently affect millions of people worldwide, living with hepatitis C may require us to make some difficult choices and changes. But the good news is that when you accept your responsibilities with this condition, you are rewarded by regaining a sense of control and self-determination with respect to your circumstance.
Dana Dietrich (Randy's Daughter)
"The Day I Found Out My Dad Was Ill"
"It was the day before my birthday, and I was out having a snowball fight, girls versus boys (we were beating them good). My dad pulled up in his car and honked, right as I turned to see him, a huge snowball hit me right in the face. Ouch! When I got into the car, my dad was on his cell phone. I waved good-bye to my friends and we left.
For about ten minutes, we drove in total silence, then my dad turned to me and said, "I have something I need to tell you.
"Right off it was bad. He went on, "About a month ago, I took a new kind of blood test and found out that I have hepatitis C, it is a disease that harms the liver. And I believe that if I go on this special diet, I will get better" I was totally shocked, I mean, my dad, my perfect dad had hepatitis C. Then I thought of something else that he had said, "I will get better"! My dad is very strong and when he gets better, it will be the happiest day of my life."
Randy Dietrich is founder of the Caring Ambassadors Program Hepatitis C Program
CAP is proud to announce their 4th edition of Hepatitis C Choices
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