Monday, March 29, 2010
Joe's Hepatitis C Tale
I am calling this phase 1 as I am extremely hopeful on receiving a liver transplant sometime this year. Phase 2 will be post transplant and as of yet it remains to be written.
I was first diagnosed with hep C in the late 1980's. I had a routine physical and the doc found my liver enzymes elevated and said to stop drinking for 6 months and come back. Six months later there were more tests and they called and said the doc wants to see you. OK. He says "you have hepatitis C." What the hell is that I ask? "It's a virus that attacks your liver and it can be fatal." Well, my head was spinning at that news and the rest of the discussion was a bit of a blur. He was sending me to a gastroenterologist for more follow up. Went home and told the wife and thank God she is a very level headed woman. Always knows what to do as far as health issues are concerned. She works in health care and has been the rock in my life. I'm pretty sure I would have been dead many years ago if not for her. I belonged to an HMO at the time and they used the specialists in the HMO's clinics. Upon meeting the GI for the first time it was obvious to me that he was very competent and concerned about my health. Long discussion on how to contract the virus. No, I wasn't and never had been an IV drug user, no transfusions, etc. Couldn't figure it out and still haven't. I have pretty much assumed that I got it somehow from my older brother who was a hard core heroin addict. I never shared the fun with him and never saw him again after 1980. With an addict you either cut them loose or they will take you and everyone around them to the bottom with them. And that bottom is pretty far down. I was the last in the family to try and save him but after almost getting my new girlfriend (now my wife) arrested, I cut myself off from all contact. He passed away 10 years ago waiting for a liver transplant. So being in the same position makes it that much scarier for me now.
So back to the GI. He said to come back in 6 months and when I did, there was a new GI. She asked all the same questions and it was a repeat of the first visit. Come back in 6 months. And you guessed it, another GI, same discussion, etc. The HMO was a revolving door for new specialists. Screw this. I went and found the first GI that I had seen which has proved to be a very good decision on my part. I have followed him through about 5 different practices and now he heads up one of the largest and best in our area. He said he only had one other patient longer that me. It's professionals like him that I always stress to anyone who has recently been diagnosed that a good and trusting relationship is so important with your health care providers. There is no place for uncaring hacks with poor attitudes in our path of dealing with hep C. Had a biopsy somewhere along the way. 1992 I think. I already had mild cirrhosis by that time. My GI started me on the treatment of the day which in 1994 was alpha-interferon. Had all kinds of warnings about side effects, symptoms, etc. Nothing. Never even had so much as a headache. I was a non-responder. Shit. A few years later, 1998 I think (The years have become a blur and it's tough enough to keep track of my immediate care let alone 20 years ago) I was started on treatment with Interferon and Ribovarin. Got the same warnings about symptoms, side effects, etc. Yeah, yeah. I've heard them before. Well, the first night of treatment was a taste of my path into hell. I had never been so sick in my life. I was actually having convulsions. It got better after that. Well, compared to the first night anyway. I developed a few other side effects that were horrible. But the absolute worst was the sleep deprivation which unfortunately has continued to haunt me to this day. I know it is one of the symptoms of end-stage liver disease but it never left after treatment. And I proved to only have a partial response and treatment was stopped after 6 months(?). I think it was 6 anyway. And I have continued to plod along dealing with the complications as they have reared their ugly heads. Esophageal varice bleeds, the first in 2006 with the last being in 2008. Very bad and my first experience with encephalopathy. That's a condition I hope you never have to experience. Total disconnect of my brain from my body. I could think some thoughts but not express them. Probably a good thing because at one point as one of the ICU nurses told me her husband worked at the same place as me and told me his name, I just couldn't get out the words, "I work with your husband. He's a complete asshole". Not what you should be telling your care givers so it worked in my favor. And I had been in a hospital enough times to know how to work the call button. But do you think I could figure it out when I had to pee? No. Boy do they get upset when you get out of the bed. Of course they just tie you to it after that and you just pee yourself. Loads of fun if that's your fetish. Unfortunately it's not mine. That's when I was referred to a transplant center for evaluation. A full week of more tests than I knew existed. So many questions and interviews. One of the things that have bothered me over time is the endless questioning by every health care provider that I have ever met. How did you get it? Don't know. Then the "you're lying" look. I mentioned this to my GI and he explained that they want to know if there are any other risk factors and I should be patient. To a point. Then he said "just tell them you slept with Pamela Anderson". I tried that once to a very poor reception. Probably won't do it again. But I was approved for transplant and am waiting patiently. Have dealt with ascites, its better now. And I am in end-stage liver disease with a MELD score of 15 and now have HCC (heptocellular carcinoma) with the tumor currently 1.9cm in size. Next MRI is in May. We'll see what that brings. But through the last 20+ years my family and I have enjoyed life as much as possible. We love to travel and have always taken at least 2 vacations a year. The beach is the favorite and skiing also ranks way up there. Plenty of whitewater kayaking which I love and can no longer do.
I was fortunate to have been able to take advantage of early retirement a couple years ago with my wife's blessing. If I wasn't sick I would never have retired because I love my trade and am very good at it. And my days now? Well, my wife works too much (but loves what she does), my oldest Daughter is either working or at college and will start teaching next year. My youngest Daughter is at college out of town and in 4 years will be a pharmacist. So my day is boring and lonely. But I have my dogs for company, 2 labs that are constant companions and play machines at the same time. Thankfully the weather is warming. We have a water front home so there will be no keeping the labs out of the river. So that's pretty much it for phase1 of my tale. I'll keep my fingers crossed and will be sure to provide phase 2 if possible
I was first diagnosed with hep C in the late 1980's. I had a routine physical and the doc found my liver enzymes elevated and said to stop drinking for 6 months and come back. Six months later there were more tests and they called and said the doc wants to see you. OK. He says "you have hepatitis C." What the hell is that I ask? "It's a virus that attacks your liver and it can be fatal." Well, my head was spinning at that news and the rest of the discussion was a bit of a blur. He was sending me to a gastroenterologist for more follow up. Went home and told the wife and thank God she is a very level headed woman. Always knows what to do as far as health issues are concerned. She works in health care and has been the rock in my life. I'm pretty sure I would have been dead many years ago if not for her. I belonged to an HMO at the time and they used the specialists in the HMO's clinics. Upon meeting the GI for the first time it was obvious to me that he was very competent and concerned about my health. Long discussion on how to contract the virus. No, I wasn't and never had been an IV drug user, no transfusions, etc. Couldn't figure it out and still haven't. I have pretty much assumed that I got it somehow from my older brother who was a hard core heroin addict. I never shared the fun with him and never saw him again after 1980. With an addict you either cut them loose or they will take you and everyone around them to the bottom with them. And that bottom is pretty far down. I was the last in the family to try and save him but after almost getting my new girlfriend (now my wife) arrested, I cut myself off from all contact. He passed away 10 years ago waiting for a liver transplant. So being in the same position makes it that much scarier for me now.
So back to the GI. He said to come back in 6 months and when I did, there was a new GI. She asked all the same questions and it was a repeat of the first visit. Come back in 6 months. And you guessed it, another GI, same discussion, etc. The HMO was a revolving door for new specialists. Screw this. I went and found the first GI that I had seen which has proved to be a very good decision on my part. I have followed him through about 5 different practices and now he heads up one of the largest and best in our area. He said he only had one other patient longer that me. It's professionals like him that I always stress to anyone who has recently been diagnosed that a good and trusting relationship is so important with your health care providers. There is no place for uncaring hacks with poor attitudes in our path of dealing with hep C. Had a biopsy somewhere along the way. 1992 I think. I already had mild cirrhosis by that time. My GI started me on the treatment of the day which in 1994 was alpha-interferon. Had all kinds of warnings about side effects, symptoms, etc. Nothing. Never even had so much as a headache. I was a non-responder. Shit. A few years later, 1998 I think (The years have become a blur and it's tough enough to keep track of my immediate care let alone 20 years ago) I was started on treatment with Interferon and Ribovarin. Got the same warnings about symptoms, side effects, etc. Yeah, yeah. I've heard them before. Well, the first night of treatment was a taste of my path into hell. I had never been so sick in my life. I was actually having convulsions. It got better after that. Well, compared to the first night anyway. I developed a few other side effects that were horrible. But the absolute worst was the sleep deprivation which unfortunately has continued to haunt me to this day. I know it is one of the symptoms of end-stage liver disease but it never left after treatment. And I proved to only have a partial response and treatment was stopped after 6 months(?). I think it was 6 anyway. And I have continued to plod along dealing with the complications as they have reared their ugly heads. Esophageal varice bleeds, the first in 2006 with the last being in 2008. Very bad and my first experience with encephalopathy. That's a condition I hope you never have to experience. Total disconnect of my brain from my body. I could think some thoughts but not express them. Probably a good thing because at one point as one of the ICU nurses told me her husband worked at the same place as me and told me his name, I just couldn't get out the words, "I work with your husband. He's a complete asshole". Not what you should be telling your care givers so it worked in my favor. And I had been in a hospital enough times to know how to work the call button. But do you think I could figure it out when I had to pee? No. Boy do they get upset when you get out of the bed. Of course they just tie you to it after that and you just pee yourself. Loads of fun if that's your fetish. Unfortunately it's not mine. That's when I was referred to a transplant center for evaluation. A full week of more tests than I knew existed. So many questions and interviews. One of the things that have bothered me over time is the endless questioning by every health care provider that I have ever met. How did you get it? Don't know. Then the "you're lying" look. I mentioned this to my GI and he explained that they want to know if there are any other risk factors and I should be patient. To a point. Then he said "just tell them you slept with Pamela Anderson". I tried that once to a very poor reception. Probably won't do it again. But I was approved for transplant and am waiting patiently. Have dealt with ascites, its better now. And I am in end-stage liver disease with a MELD score of 15 and now have HCC (heptocellular carcinoma) with the tumor currently 1.9cm in size. Next MRI is in May. We'll see what that brings. But through the last 20+ years my family and I have enjoyed life as much as possible. We love to travel and have always taken at least 2 vacations a year. The beach is the favorite and skiing also ranks way up there. Plenty of whitewater kayaking which I love and can no longer do.
I was fortunate to have been able to take advantage of early retirement a couple years ago with my wife's blessing. If I wasn't sick I would never have retired because I love my trade and am very good at it. And my days now? Well, my wife works too much (but loves what she does), my oldest Daughter is either working or at college and will start teaching next year. My youngest Daughter is at college out of town and in 4 years will be a pharmacist. So my day is boring and lonely. But I have my dogs for company, 2 labs that are constant companions and play machines at the same time. Thankfully the weather is warming. We have a water front home so there will be no keeping the labs out of the river. So that's pretty much it for phase1 of my tale. I'll keep my fingers crossed and will be sure to provide phase 2 if possible
Linda's Story
I was just diagnosed a year ago as 1a and I have not had a biopsy yet. I am 51 and I have had this virus now for over 30 years. Back when I was about 17 or so I lived the wild life and found myself in the hospital with a very bad case of hepatitis. Back then they called it serum hepatitis because that was the type of testing they did then. There was no hep c; just serum or infectious hep. Well I was in the hospital for about 6 weeks and was on the critical list for several weeks. I made it through and never thought about it much. Back then the only thing they told me was that I would most likely always have it in my blood and could not donate blood; but that’s all they knew then. They also told me that it was possible that I would have liver problems later. I contacted the virus from a bad tattoo that I still have today. There was a party with free tattoo’s and some whiskey and I indulged. Well as I said I never thought about it much and I went to my family doctor this past year with health problems. My liver function tests came back high so as a routine he tested me for hep c and that’s when I found out I had it. It also may be related to all or some of my other health problems and there are many. I have been living in pain for over 15 years now with my back and I have degenerative disk disease and two other forms of arthritis that affect the joints. I go to pain management and have been on pain meds now for 8 years; they help some but I still have a lot of pain. I have COPD, emphysema, osteoporosis and insomnia. They all may be related to this virus destroying my body for the past 30 years. I took treatment last year; the standard interferon and ribovarin, but after 6 months did not work. Now I am waiting for new meds. The doctor that treated me has done blood work and an ultra sound so I do not know how much liver damage I have but I have a lot of pain on my upper right side. I have terrible memory problems and I am so tired all the time but yet I can’t sleep much. When I asked about a biopsy he says well you are going to take treatment anyway so why do a biopsy. I feel like I am going down hill faster and faster and I don’t know what to do since the treatment would not work for me; so I just keep reading about everyone else’s problems and compare there’s to mine and I keep hoping the new meds will be my answer. I developed a few more problems with the treatment. I got psoriasis and my eyes bother me from time to time and the eye doctor I went to said it was a side effect from interferon. I get blast of color images that come on all of a sudden they are called retina migraines almost like looking in a kaleidoscope. My biggest problem is the pain from my disks and joints and being so tired. I hope now that this virus is out in the open now more people will find out they have it early so it does not destroy them like it did me. The only thing I can do now is tell more people about it and hope for better treatments in the future. I have 5 grandchildren and I would love to feel better so I can spend better time with them. I have 3 that live far away that I do not see because of my health and I would love to get better so I can go see them. Well I will keep reading and learning for now and I will help anyone that needs answers or just wants to talk. I have posted a few times on Janis and friends I enjoy that site in fact it is the only one I use. Thanks for listening and caring.
Friday, March 26, 2010
Karen's Personal Hep C Story
I found out I had Hepatitis C 2 weeks after I got married. I was 29. I went to get a wisdom tooth extracted and while I was knocked out- the nurse pricked her finger and they tested my blood. I havent thought about that in a long long time ( I am 39 now) but looking back I have to say- WOW. I cannot believe that random finger #### happened. I probably would never have known!
I was not at all surprised about the Hep C. I was a teenage runaway and junkie. I started heroin at age 16 and stopped for good at age 20. I actually felt relieved about Hep C because it wasnt HIV- which my brother, whom I had shared drugs needles with, had contracted a few years earlier. So, I hung up the phone and called a friend and told her I was too confused and didnt know what Hep C was but could she please look it up online and call me back. It didnt really seem like a big deal to me. (compared to HIV anyway) I felt embarrassed that I just got married to a very stable and very normal man who did know I had done drugs when I was a teen but probably didn’t know that I used them intravenously. Nine years had gone by and I was a totally different person- someone that didnt seem like theyd lived the way I had. Now all of this shame was back up again.
I went to the liver Dr. in Virginia. He was the top guy in the Wash, DC area. I joined Delphi forums. I was told I was a 3a genotype and did a biopsy that showed like a 2.5 grade or something. I started treatment. I was a newlywed and a new stepmother to a 10 year old girl. I was afraid of feeling sick and I was afraid of the emotional side effects of the ribovarin. In my family- I have lost my father and grandmother and uncle to suicide. I was afraid that I would become like them. So- after about 2 months on treatment, I started to miss pills. When I was told I was clear at 12 weeks or so- I stopped the pills and just did the shots. I was too young (emotionally) and just didn't care enough about myself to do the treatment.
That was 10 years ago. Since then, a lot has changed. My marriage ended up not working out after 5 years. I left the DC area and came to Los Angeles. I went to a liver guy and they told me that the Hep C was back. That wasn't a surprise. So- technically I am called a "relapser" but I really only did about 12 or 15 weeks on treatment or so. I got ready to do the meds again a few years ago. I lived by myself and got really down about "what is the point of life?" For many of us women- we hit that age where you have to decide- kids or no kids? I had four miscarriages with my husband and knew that getting pregnant would be hard if even possible and on the day I was to start meds - I called the treatment off. I couldn't bear to lose two years of potential babymaking time because of toxic chemicals in my system. I had to at least TRY. If it was in the master plan for me to be a Mom- then I would try till I was 40 and see what happened.
And we all know what happened next. I got pregnant. My Dr was shocked. I didn't even believe it until there was an actual person flailing around in front of me. I had a few moments in the deliver room where all I could see was blood and I was horrified that my Hep C blood was all over this place. Thats how Hep C is... you always have a little tiny monkey on your back. Here was the most beautiful moment of my life- and Im wretching inside that my blood is going to get all over my friends and family.
So here we are now. I am 2 months away from turning 40. My son is 2 years and 3 months. I started treatment 12 weeks ago and I take every pill and shot as directed. I had a huge viral load and I may possibly end up doing a year on tx even though Im a 3a.
This is not easy. I work from home and have had to take more work on to pay for the 1000$ a month co-pay. My child is home with me and he isn't talking yet but sure likes to scream really loud. I live with my sons father, as co-parents. I didn't think it was fair that we should split custody of such a young child so we decided to live together and its worked out pretty well. I am lucky to have someone to help me with my son. The WORST part of treatment for me is feeling like I dont have energy to give this guy the childhood he deserves. Zoo, park, train museum, Disney- all of those things take energy. But I do it. I've let Hep C take enough of MY life already ..I don't need it butting in on my little boys life.
Its been a long ten years with this. One fourth of my life has been spent with this little C-shaped skeleton clanking around in my closet. I have no idea what I will feel like when the meds are done. I have no idea what normal even is. I sure do hope to find out though!!
Thanks guys for listening. It feels pretty good just to put this out there. :)
I was not at all surprised about the Hep C. I was a teenage runaway and junkie. I started heroin at age 16 and stopped for good at age 20. I actually felt relieved about Hep C because it wasnt HIV- which my brother, whom I had shared drugs needles with, had contracted a few years earlier. So, I hung up the phone and called a friend and told her I was too confused and didnt know what Hep C was but could she please look it up online and call me back. It didnt really seem like a big deal to me. (compared to HIV anyway) I felt embarrassed that I just got married to a very stable and very normal man who did know I had done drugs when I was a teen but probably didn’t know that I used them intravenously. Nine years had gone by and I was a totally different person- someone that didnt seem like theyd lived the way I had. Now all of this shame was back up again.
I went to the liver Dr. in Virginia. He was the top guy in the Wash, DC area. I joined Delphi forums. I was told I was a 3a genotype and did a biopsy that showed like a 2.5 grade or something. I started treatment. I was a newlywed and a new stepmother to a 10 year old girl. I was afraid of feeling sick and I was afraid of the emotional side effects of the ribovarin. In my family- I have lost my father and grandmother and uncle to suicide. I was afraid that I would become like them. So- after about 2 months on treatment, I started to miss pills. When I was told I was clear at 12 weeks or so- I stopped the pills and just did the shots. I was too young (emotionally) and just didn't care enough about myself to do the treatment.
That was 10 years ago. Since then, a lot has changed. My marriage ended up not working out after 5 years. I left the DC area and came to Los Angeles. I went to a liver guy and they told me that the Hep C was back. That wasn't a surprise. So- technically I am called a "relapser" but I really only did about 12 or 15 weeks on treatment or so. I got ready to do the meds again a few years ago. I lived by myself and got really down about "what is the point of life?" For many of us women- we hit that age where you have to decide- kids or no kids? I had four miscarriages with my husband and knew that getting pregnant would be hard if even possible and on the day I was to start meds - I called the treatment off. I couldn't bear to lose two years of potential babymaking time because of toxic chemicals in my system. I had to at least TRY. If it was in the master plan for me to be a Mom- then I would try till I was 40 and see what happened.
And we all know what happened next. I got pregnant. My Dr was shocked. I didn't even believe it until there was an actual person flailing around in front of me. I had a few moments in the deliver room where all I could see was blood and I was horrified that my Hep C blood was all over this place. Thats how Hep C is... you always have a little tiny monkey on your back. Here was the most beautiful moment of my life- and Im wretching inside that my blood is going to get all over my friends and family.
So here we are now. I am 2 months away from turning 40. My son is 2 years and 3 months. I started treatment 12 weeks ago and I take every pill and shot as directed. I had a huge viral load and I may possibly end up doing a year on tx even though Im a 3a.
This is not easy. I work from home and have had to take more work on to pay for the 1000$ a month co-pay. My child is home with me and he isn't talking yet but sure likes to scream really loud. I live with my sons father, as co-parents. I didn't think it was fair that we should split custody of such a young child so we decided to live together and its worked out pretty well. I am lucky to have someone to help me with my son. The WORST part of treatment for me is feeling like I dont have energy to give this guy the childhood he deserves. Zoo, park, train museum, Disney- all of those things take energy. But I do it. I've let Hep C take enough of MY life already ..I don't need it butting in on my little boys life.
Its been a long ten years with this. One fourth of my life has been spent with this little C-shaped skeleton clanking around in my closet. I have no idea what I will feel like when the meds are done. I have no idea what normal even is. I sure do hope to find out though!!
Thanks guys for listening. It feels pretty good just to put this out there. :)
Connie's Hepatitis Story
Hi, my name is Connie and I have been living with hep c since 1988. I have tried and failed treatment 3 different times. My dr. recommended I receive a liver transplant last July and actually rec'd one in Oct. 09.
Still fighting with the hep c and on my 4th round of treatment, hoping to at least slow this puppy down enough to wait for the cure. I know it's coming, hopefully in my lifetime!!!!!
I believe public awareness is key and should be started with education of the children; they need to know how important the liver is and just what its functions are. How they should avoid medications and alcohol as much as possible.
I also believe that blood test for hep c should be given at least by the age of 30 unless otherwise indicated; it should be part of your physical just like mammograms, colonoscopies, etc.
Hopefully with people like you to help bring this out we will be able to stop this disease. God bless and good luck. Connie
Still fighting with the hep c and on my 4th round of treatment, hoping to at least slow this puppy down enough to wait for the cure. I know it's coming, hopefully in my lifetime!!!!!
I believe public awareness is key and should be started with education of the children; they need to know how important the liver is and just what its functions are. How they should avoid medications and alcohol as much as possible.
I also believe that blood test for hep c should be given at least by the age of 30 unless otherwise indicated; it should be part of your physical just like mammograms, colonoscopies, etc.
Hopefully with people like you to help bring this out we will be able to stop this disease. God bless and good luck. Connie
A Story of Courage - David's Story
I really don’t know where to start here. Some of my journey has been a nightmare and other parts have been a blessing.
I guess I’ll start with my diagnosis of hepatitis c. Life history? I don’t think really matters so much except for the fact that I didn’t know disease’s such as aids or hepatitis existed. We’re young and do things. I lived with an out of the way crowd and I expect this is how I contracted hepatitis c. See, we were sitting around a table one night, drinking and decided we were going to tattoo each other, which we did. You have to realize, I’m now a 55 year old male and at the time I think I was maybe early 20’s First tattoo at 16. Anyway, 30 some years later…..I always worked hard to provide for my family and found myself getting seriously tired all the time, didn’t feel like eating and my concentration levels were wavering. Well, I had been throwing up in the mornings before work for months. Went to work, did my job, and things kept getting worse. Forgetting things, falling asleep at work at my desk (I never did that in my life). It got to the point where I couldn’t handle the throwing up every day. I was getting bloated, my stomach kept swelling. I would drive home on the highway for a distance of maybe 30 miles and started getting lost. A trip I’d done a million times. Something just wasn’t right. I think the big one for me was talking to my son one night in and I honestly couldn’t remember his name and I was jaundiced. My son and I talked all the time. How could I forget his name? Off to the doctors. I was sent for an endoscopy for the throwing up issue at first, (well I think my doc had other things on her mind also). After my procedure Mr. Doc comes out stating..”David” you’re a very sick boy…diagnosis..severe pylori infection and hepatitis c. I know enough about anatomy that I can say I was having liver pain but thought it was from beer…NOT…Gastroenterologist sent me to a hepatologist at the Cleveland Clinic where they did a multitude of tests. Long story short. My results came back with active hepatitis c and with the upper quadrant pain I was having they wanted to evict my gallbladder. I said do it and they did. At the same time they did a wedge biopsy of my liver which I’m glad for as it takes a bigger sample of the liver for Mr. Pathologist to look at. My results came back with genotype 1b with advanced cirrhosis and I need to start treatment as soon as possible. GREAT…..I seriously educated myself in a hurry about hepatitis c and the treatments. Oh Joy…Funny thing about all this is that I never got mad or really scared..Just..Let’s fix it. I also had cryoglobulinemia with my diagnosis which explained a lot about why my hands were freezing up outside in cooler weather an going back to normal when they warmed. God, this has been a while and I’m forgetting so much.
Starting Treatment:
Sticking needles in my stomach??? Okay, I did it and got used to it, I guess? First two months I had to have blood drawn every week because of the state my liver was in. Funny, Doctor told me to keep something close by me to drink all the time so I elected to drink pop…big, big mistake. It would have been nice if he had told me water. Anyway, I got sick…ended up with wooly cottonballs for my eyes…anemic . Depression? WOW……I’ve never had an issue with this in my life. Two months into treatment I was balling my eyes out barbecuing and I love to barbecue. Sleep? Forget it. It wasn’t happening. I was up for so many days and nights I was honestly hallucinating. My wife at the time told me I was having a conversation with my kid brother in the living room. She asked who I was talking to and I told her to go….herself. I don’t talk like that. Thing was, my brother I was conversing with in front of my face lives over 1000 miles away. Back to the doctors I go. There comes a time when you just have to realize you need help, no matter how stubborn you are. Had to see psychiatrist and gave me meds for depression..celexa, which I must say worked very well for me. I could cook again..yipppeee….my next issue was the sleeping. The doctors always said I was kind of a unique patient because they tried so many things on me that just didn’t work and were strong enough to knock out a horse. They tried everything, believe me. Toward the end I ended up taking 20mgs of ambien combined with 600mgs of neurontin just to get to sleep. That’s a lot of meds. Needless to say my life was, well I was, a walking or sitting zombie.
At this point I need to mention and feel this was a life saver for me. Doing my research on this disease, I came across support forums for people like myself so looked into it. I was an outdoor guy, knew nothing about computers let alone type? Got to be kidding me. My wife at the time was actually a good support system in the beginning and typed for me when I went into chat rooms at Janis and Friends. I am going to say this. If it wasn’t for Janis and Friends Hepatitis C support forum I would likely be taking a dirt nap now. Not a plug but a fact. God, this could be a long story.
Okay, I’m sleeping now, depression’s under control, now I become anemic. I dropped from a hemoglobin level of 17+ to below 10 in real short order. PROCRIT…another weekly injection. No big deal really because it kept me where I needed to be. Pegasys in my tummy and procrit in my thigh, for 44 weeks.
I know I’m leaving a lot out of this story as I have just forgotten. I used to have a journal but it left home. The whole emotional aspects of this disease and what it’s done to me personally? Hard for me (treatment story isn’t over yet) to really say. In a lot of ways I’m glad I got sick as it woke me up, changed me. Gave me the desire to help people, love and care. I wish I could convey to people what this has really done to me and for me. I use to care just about Dave. Now Dave doesn’t care about him but about the people he can help. Funny story here and I might as well share as I seem to be on a mission?. God, my Grandmother was from and always use to tell me (with my hand in hers) David…some day you’ll be of help to people and find who you are. I never believed this but find that I now want nothing more than to help people. Did having hepatitis c change me? OH YES!!!
I devote my time to helping people when I can. Cleveland Clinic had me do a television interview about hepatitis c hosted by Regis Philbins wife Joy. I’ve talked at schools yet I will never be able to do enough and now find I just don’t have the energy or funds to do so.
Back to my treatment journey…Half way through treatment my throat started acting up. I got hoarse and was at first diagnosed with oral thrush. Fixed that and it came back. Still was talking like a mafia dude after that was cured. Okay Dave, you have a cold. Six months into this nonsense they diagnosed me with cancer in my larynx. Fun never ends. Had surgery for this and never missed one shot of my interferon treatment. Someone had to be watching over me. I had also acquired hypothyroidism during this escapade. 56 weeks of interferon, diagnosed with genotype 1b with advanced cirrhosis I’m still alive and doing quite well. Yes, I have issues with ascities, other things, but…I do not have hepatitis c:-)
Another short story…Dang, I could go on all night. I had a gastro once that asked me to teach him about hepatitis c. He is now the head of diabetes for the clinic. He didn’t know enough about hep c? Please educate yourself about this disease and teach others. Doesn’t matter who they or you are. You can never stop learning.
How am I today???? I’m going to be truly honest here. I no longer have hepatits c but I didn’t listen to my body. Well, I guess I did and was just too naive or stubborn to deal with it. I now deal with issues like, insomnia ,have dealt with cancer again ..I live in chronic pain and there are a lot of nights I wish I could just go to sleep and never wake up again. Thing is…what I deal with now has nothing to do with my having hepatitis c, (well the emotional caring part does), or the treatment I took to rid myself of hepatitis c. I get comfort out of doing research about hepatitis and helping those that are so lost coming into this. I feel so bad and wish in my heart I could take everyone’s pain away.
I could add so much more to this but it’s already getting lengthy. More than welcome to email me at stepfinder@hotmail.com
David
I guess I’ll start with my diagnosis of hepatitis c. Life history? I don’t think really matters so much except for the fact that I didn’t know disease’s such as aids or hepatitis existed. We’re young and do things. I lived with an out of the way crowd and I expect this is how I contracted hepatitis c. See, we were sitting around a table one night, drinking and decided we were going to tattoo each other, which we did. You have to realize, I’m now a 55 year old male and at the time I think I was maybe early 20’s First tattoo at 16. Anyway, 30 some years later…..I always worked hard to provide for my family and found myself getting seriously tired all the time, didn’t feel like eating and my concentration levels were wavering. Well, I had been throwing up in the mornings before work for months. Went to work, did my job, and things kept getting worse. Forgetting things, falling asleep at work at my desk (I never did that in my life). It got to the point where I couldn’t handle the throwing up every day. I was getting bloated, my stomach kept swelling. I would drive home on the highway for a distance of maybe 30 miles and started getting lost. A trip I’d done a million times. Something just wasn’t right. I think the big one for me was talking to my son one night in and I honestly couldn’t remember his name and I was jaundiced. My son and I talked all the time. How could I forget his name? Off to the doctors. I was sent for an endoscopy for the throwing up issue at first, (well I think my doc had other things on her mind also). After my procedure Mr. Doc comes out stating..”David” you’re a very sick boy…diagnosis..severe pylori infection and hepatitis c. I know enough about anatomy that I can say I was having liver pain but thought it was from beer…NOT…Gastroenterologist sent me to a hepatologist at the Cleveland Clinic where they did a multitude of tests. Long story short. My results came back with active hepatitis c and with the upper quadrant pain I was having they wanted to evict my gallbladder. I said do it and they did. At the same time they did a wedge biopsy of my liver which I’m glad for as it takes a bigger sample of the liver for Mr. Pathologist to look at. My results came back with genotype 1b with advanced cirrhosis and I need to start treatment as soon as possible. GREAT…..I seriously educated myself in a hurry about hepatitis c and the treatments. Oh Joy…Funny thing about all this is that I never got mad or really scared..Just..Let’s fix it. I also had cryoglobulinemia with my diagnosis which explained a lot about why my hands were freezing up outside in cooler weather an going back to normal when they warmed. God, this has been a while and I’m forgetting so much.
Starting Treatment:
Sticking needles in my stomach??? Okay, I did it and got used to it, I guess? First two months I had to have blood drawn every week because of the state my liver was in. Funny, Doctor told me to keep something close by me to drink all the time so I elected to drink pop…big, big mistake. It would have been nice if he had told me water. Anyway, I got sick…ended up with wooly cottonballs for my eyes…anemic . Depression? WOW……I’ve never had an issue with this in my life. Two months into treatment I was balling my eyes out barbecuing and I love to barbecue. Sleep? Forget it. It wasn’t happening. I was up for so many days and nights I was honestly hallucinating. My wife at the time told me I was having a conversation with my kid brother in the living room. She asked who I was talking to and I told her to go….herself. I don’t talk like that. Thing was, my brother I was conversing with in front of my face lives over 1000 miles away. Back to the doctors I go. There comes a time when you just have to realize you need help, no matter how stubborn you are. Had to see psychiatrist and gave me meds for depression..celexa, which I must say worked very well for me. I could cook again..yipppeee….my next issue was the sleeping. The doctors always said I was kind of a unique patient because they tried so many things on me that just didn’t work and were strong enough to knock out a horse. They tried everything, believe me. Toward the end I ended up taking 20mgs of ambien combined with 600mgs of neurontin just to get to sleep. That’s a lot of meds. Needless to say my life was, well I was, a walking or sitting zombie.
At this point I need to mention and feel this was a life saver for me. Doing my research on this disease, I came across support forums for people like myself so looked into it. I was an outdoor guy, knew nothing about computers let alone type? Got to be kidding me. My wife at the time was actually a good support system in the beginning and typed for me when I went into chat rooms at Janis and Friends. I am going to say this. If it wasn’t for Janis and Friends Hepatitis C support forum I would likely be taking a dirt nap now. Not a plug but a fact. God, this could be a long story.
Okay, I’m sleeping now, depression’s under control, now I become anemic. I dropped from a hemoglobin level of 17+ to below 10 in real short order. PROCRIT…another weekly injection. No big deal really because it kept me where I needed to be. Pegasys in my tummy and procrit in my thigh, for 44 weeks.
I know I’m leaving a lot out of this story as I have just forgotten. I used to have a journal but it left home. The whole emotional aspects of this disease and what it’s done to me personally? Hard for me (treatment story isn’t over yet) to really say. In a lot of ways I’m glad I got sick as it woke me up, changed me. Gave me the desire to help people, love and care. I wish I could convey to people what this has really done to me and for me. I use to care just about Dave. Now Dave doesn’t care about him but about the people he can help. Funny story here and I might as well share as I seem to be on a mission?. God, my Grandmother was from and always use to tell me (with my hand in hers) David…some day you’ll be of help to people and find who you are. I never believed this but find that I now want nothing more than to help people. Did having hepatitis c change me? OH YES!!!
I devote my time to helping people when I can. Cleveland Clinic had me do a television interview about hepatitis c hosted by Regis Philbins wife Joy. I’ve talked at schools yet I will never be able to do enough and now find I just don’t have the energy or funds to do so.
Back to my treatment journey…Half way through treatment my throat started acting up. I got hoarse and was at first diagnosed with oral thrush. Fixed that and it came back. Still was talking like a mafia dude after that was cured. Okay Dave, you have a cold. Six months into this nonsense they diagnosed me with cancer in my larynx. Fun never ends. Had surgery for this and never missed one shot of my interferon treatment. Someone had to be watching over me. I had also acquired hypothyroidism during this escapade. 56 weeks of interferon, diagnosed with genotype 1b with advanced cirrhosis I’m still alive and doing quite well. Yes, I have issues with ascities, other things, but…I do not have hepatitis c:-)
Another short story…Dang, I could go on all night. I had a gastro once that asked me to teach him about hepatitis c. He is now the head of diabetes for the clinic. He didn’t know enough about hep c? Please educate yourself about this disease and teach others. Doesn’t matter who they or you are. You can never stop learning.
How am I today???? I’m going to be truly honest here. I no longer have hepatits c but I didn’t listen to my body. Well, I guess I did and was just too naive or stubborn to deal with it. I now deal with issues like, insomnia ,have dealt with cancer again ..I live in chronic pain and there are a lot of nights I wish I could just go to sleep and never wake up again. Thing is…what I deal with now has nothing to do with my having hepatitis c, (well the emotional caring part does), or the treatment I took to rid myself of hepatitis c. I get comfort out of doing research about hepatitis and helping those that are so lost coming into this. I feel so bad and wish in my heart I could take everyone’s pain away.
I could add so much more to this but it’s already getting lengthy. More than welcome to email me at stepfinder@hotmail.com
David
Thursday, March 25, 2010
My Story Steve Loprz
My name is Steve and I have been aware of my sickness for around 14 years. The existing medication available, interferon, was not an option for me because of the genotype 1 I have and the medications side effect. Two years ago my Doctor said I had stage 4 cirrhosis and maybe a year or more to live, he also informed me that I couldn't get on a liver transplant list until my liver starts to fail. I am a self employed concrete contractor with a wife and two children still at home; ages 21 and 15. I do feel fine thank God but I'm waiting for that to change. I don't drink or smoke; the only thing I do drink is a drink called monavie. It helps me with the energy. Besides that, my faith in God and my hope in Christ is all that carries me. thank you
Coreen's Personal Story
I was diagnosed in 2004 but had to go a year w/o drinking so in 2005 had a biopsy was diagnosed having 2b, Grade 2 Stage 4 with Fibrosis & Cirrhosis. Did the regular 24 wks in 05 with interferon/riba Undetectable than relapsed 1 month later. Waited till I retired in 06because my insurance plan wouldn't cover treatment again. Did 48 wks thru Roche free yahoo because of my piddly pension. Undetectable at end of treatment but relapsed again after 1 month!
Next I did maintenance peginterferon for 2 yrs & a bit have 1 shot left than I will patiently wait for the new drugs to hit Canada seems we are a tad behind the US in Hep C programs. I do hope that you can use my story even if I don't live in the US are you can make me an honorary US resident hmm!
I was very fortunate in the fact that the only side effects I had were extreme nausea & fatigue-which I still have- I take Zofran for the nausea & sleep a lot. I really wish/hope that the new drugs aren't as harsh as the old ones - thank goodness they weren't as bad as the very first ones that you had to mix & were so harsh on your body both physically & mentally.
So much more money should be allotted for this hideous disease that robs one of everything that is precious. Even after 2 treatments the lingering side effects are at times debilitating. I'm sure I don't have to tell you that.
I do hope this helps you somewhat & I also hope other's see the need to get their stories out in order to accomplish something that would benefit us all.
Take care Coreen
Next I did maintenance peginterferon for 2 yrs & a bit have 1 shot left than I will patiently wait for the new drugs to hit Canada seems we are a tad behind the US in Hep C programs. I do hope that you can use my story even if I don't live in the US are you can make me an honorary US resident hmm!
I was very fortunate in the fact that the only side effects I had were extreme nausea & fatigue-which I still have- I take Zofran for the nausea & sleep a lot. I really wish/hope that the new drugs aren't as harsh as the old ones - thank goodness they weren't as bad as the very first ones that you had to mix & were so harsh on your body both physically & mentally.
So much more money should be allotted for this hideous disease that robs one of everything that is precious. Even after 2 treatments the lingering side effects are at times debilitating. I'm sure I don't have to tell you that.
I do hope this helps you somewhat & I also hope other's see the need to get their stories out in order to accomplish something that would benefit us all.
Take care Coreen
Wednesday, March 24, 2010
Thelma's Story
Hi,
My name is Thelma.
I’m a 50 year old Hispanic woman living with Hep C. I contracted this disease about thirty years ago. It’s a possibility that I may have gotten it through an unsafe blood transfusion or intravenously – take your pick. All I know is that I have it.
Living with Hep C is very demanding for me. I have to constantly watch my diet and exercise. Knowing that I have this virus makes me determined to stay on top of it. I want to live. I stay informed through the group support. As I’m sitting here typing I must inform you that I’m stage two of this disease.
I’m a prime candidate for the treatment and I have accepted that approach with open mindedness and a positive attitude. I feel by doing the treatment it will prolong my life and I plan on living for a long time.
My motto is “it’s best to have done it than to wish I could have done it”.
Shalom
My name is Thelma.
I’m a 50 year old Hispanic woman living with Hep C. I contracted this disease about thirty years ago. It’s a possibility that I may have gotten it through an unsafe blood transfusion or intravenously – take your pick. All I know is that I have it.
Living with Hep C is very demanding for me. I have to constantly watch my diet and exercise. Knowing that I have this virus makes me determined to stay on top of it. I want to live. I stay informed through the group support. As I’m sitting here typing I must inform you that I’m stage two of this disease.
I’m a prime candidate for the treatment and I have accepted that approach with open mindedness and a positive attitude. I feel by doing the treatment it will prolong my life and I plan on living for a long time.
My motto is “it’s best to have done it than to wish I could have done it”.
Shalom
Loretta's Story
I won’t be starting treatment for another month, but this is my story so far.
Was a heavy drinker for the last ten years. One day in May, 2009, I began vomiting blood heavily and ended up on a life flight to a larger hospital as I live in a small community. Was diagnosed with an ulcer and Hepatitis C. Came home and went on the wagon, and found a good Doctor.
I have had this virus for at least 20 – 30 years – I am 60 years old. Had a biopsy that showed cirrhosis with grade 3 inflammation-not good. Biopsy also showed a hereditary disorder called Hemochromatosis that also can cause cirrhosis. So my poor liver had a triple whammy with the drinking, Hep C and the Hemo. The treatment for the Hemochromatosis (your liver hangs on to too much iron) is phlebotomy which is old fashioned “blood letting”. I have been doing this weekly for three months, but it is working, so will start treatment next month. The extra iron would interfere with the treatment drugs. I will be on the weekly interferon shot and daily ribovarin pills for a year. My chances of “clearing” the virus are only 40 to 50%, but I have to go ahead because of the cirrhosis. I have no idea where I got this virus, but I have to just “deal” with it now the best I can. I have a lot of company as people in my age range are just discovering they have the virus.
Was a heavy drinker for the last ten years. One day in May, 2009, I began vomiting blood heavily and ended up on a life flight to a larger hospital as I live in a small community. Was diagnosed with an ulcer and Hepatitis C. Came home and went on the wagon, and found a good Doctor.
I have had this virus for at least 20 – 30 years – I am 60 years old. Had a biopsy that showed cirrhosis with grade 3 inflammation-not good. Biopsy also showed a hereditary disorder called Hemochromatosis that also can cause cirrhosis. So my poor liver had a triple whammy with the drinking, Hep C and the Hemo. The treatment for the Hemochromatosis (your liver hangs on to too much iron) is phlebotomy which is old fashioned “blood letting”. I have been doing this weekly for three months, but it is working, so will start treatment next month. The extra iron would interfere with the treatment drugs. I will be on the weekly interferon shot and daily ribovarin pills for a year. My chances of “clearing” the virus are only 40 to 50%, but I have to go ahead because of the cirrhosis. I have no idea where I got this virus, but I have to just “deal” with it now the best I can. I have a lot of company as people in my age range are just discovering they have the virus.
MY HEP C STORY Pete S.
It may sound strange, but Hepatitis C has turned out to be one of the best things that ever happened to me. As a person with a history of problems with drugs and alcohol, it finally got me to clean up my act. Moreover, both the disease and the treatment have made my life immeasurably richer than it might otherwise have been.
I believe I got Hep C from sharing intranasal drug paraphernalia (a means of transmission that is beginning to get more attention nowadays). I was diagnosed in 2005 after being evacuated from New Orleans due to Hurricane Katrina. Having been ill for a few days, I woke up one morning jaundiced and with other symptoms of acute liver disease. When I found out what it was, I was frightened, but determined to rise to the occasion: I quit drinking and drugs and started exploring my options. I did not have insurance and, when I got back to New Orleans, the public hospital there was not even able to give me a PCR test as their machine was under water. A doctor advised that immediate treatment was best since I had probably been infected recently, but I was in no position to do that under the circumstances.
I decided to move to New York. I was quite weak for months, but slowly improved and was able to start a new life. I got a job with health insurance. A biopsy in May 2007 that showed I was at Stage 2 in the progression of liver damage. My doctor advised treatment; I agreed but I wanted to enjoy the summer. I was scared, feeling like someone who was going off to war or to prison for a year. But I felt that it was the right thing to do at that time and that I had a stable set of circumstances for doing so: apartment, job and supportive network of family and friends.
I lived it up as best I could that summer, and in October ‘07 did my first injection. I was very sick for that first one, but less so for the second and third. I learned, mostly, to get used to it. Since I had genotype 1, I was in for the 48-week treatment. I was able to go to work for the entire duration of the treatment, only occasionally taking days off to rest. I went to a couple of different support groups that we have here in New York which I found very helpful.
Interferon therapy is one of the most difficult things I have ever done. I counted down the weeks and days till it would be over. Fortunately, my 4-week blood work showed my viral load to be undetectable, meaning I had an excellent chance of clearing the virus successfully. This helped keep me going through the long year. I had severe fatigue, appetite loss and weight loss (about 20 pounds). After about 7 weeks I got sufficiently anemic that my doctor put me on Procrit, which meant another weekly injection, which I hated. Still, I think the worst thing about treatment, for me, was the way it affected my mood and emotions. I would become extremely anxious and irritable to the point where I would find myself, for example, yelling at someone else in line at the grocery store.
When I had had enough of this sort of thing, I asked my doctor for help. He gave me an antidepressant, which helped a lot for a while but then problems returned. We doubled the dose, which helped, but these mood issues continued to bring me a lot of misery until a couple of months after finishing the treatment.
However, despite it all, I was able to finish, in September 2008. I was so happy those first days when I didn’t have to do any injections or take any pills, but the truth is that it took me some months to really get back to normal energy levels and feeling consistently good again. In all my follow-up labs I have continued to have an undetectable viral load.
Ever since then, well, life has really taken off to some remarkable places. I don’t want you to think I never laughed or had moments of joy while on treatment, but it was, overall, like traveling through a long dark tunnel. But it was worth it! Not only do I have a clean bill of health, I have had the immense satisfaction of facing my fear, doing what needed to be done and coming out the other side successful. I feel really good about myself, and my life is that much brighter for having gone through a dark time.
I’ve tried to remain available to help new HCV patients coming down the pike, and have done a bit of advocacy work, but mostly these days I am doing my best to live, live, live. I can’t believe how much energy I have! I didn’t ask for Hepatitis C but I believe in the old cliché about making lemonade when life deals you lemons. It has brought unexpected and wonderful rewards, and I wouldn’t have it any other way.
I believe I got Hep C from sharing intranasal drug paraphernalia (a means of transmission that is beginning to get more attention nowadays). I was diagnosed in 2005 after being evacuated from New Orleans due to Hurricane Katrina. Having been ill for a few days, I woke up one morning jaundiced and with other symptoms of acute liver disease. When I found out what it was, I was frightened, but determined to rise to the occasion: I quit drinking and drugs and started exploring my options. I did not have insurance and, when I got back to New Orleans, the public hospital there was not even able to give me a PCR test as their machine was under water. A doctor advised that immediate treatment was best since I had probably been infected recently, but I was in no position to do that under the circumstances.
I decided to move to New York. I was quite weak for months, but slowly improved and was able to start a new life. I got a job with health insurance. A biopsy in May 2007 that showed I was at Stage 2 in the progression of liver damage. My doctor advised treatment; I agreed but I wanted to enjoy the summer. I was scared, feeling like someone who was going off to war or to prison for a year. But I felt that it was the right thing to do at that time and that I had a stable set of circumstances for doing so: apartment, job and supportive network of family and friends.
I lived it up as best I could that summer, and in October ‘07 did my first injection. I was very sick for that first one, but less so for the second and third. I learned, mostly, to get used to it. Since I had genotype 1, I was in for the 48-week treatment. I was able to go to work for the entire duration of the treatment, only occasionally taking days off to rest. I went to a couple of different support groups that we have here in New York which I found very helpful.
Interferon therapy is one of the most difficult things I have ever done. I counted down the weeks and days till it would be over. Fortunately, my 4-week blood work showed my viral load to be undetectable, meaning I had an excellent chance of clearing the virus successfully. This helped keep me going through the long year. I had severe fatigue, appetite loss and weight loss (about 20 pounds). After about 7 weeks I got sufficiently anemic that my doctor put me on Procrit, which meant another weekly injection, which I hated. Still, I think the worst thing about treatment, for me, was the way it affected my mood and emotions. I would become extremely anxious and irritable to the point where I would find myself, for example, yelling at someone else in line at the grocery store.
When I had had enough of this sort of thing, I asked my doctor for help. He gave me an antidepressant, which helped a lot for a while but then problems returned. We doubled the dose, which helped, but these mood issues continued to bring me a lot of misery until a couple of months after finishing the treatment.
However, despite it all, I was able to finish, in September 2008. I was so happy those first days when I didn’t have to do any injections or take any pills, but the truth is that it took me some months to really get back to normal energy levels and feeling consistently good again. In all my follow-up labs I have continued to have an undetectable viral load.
Ever since then, well, life has really taken off to some remarkable places. I don’t want you to think I never laughed or had moments of joy while on treatment, but it was, overall, like traveling through a long dark tunnel. But it was worth it! Not only do I have a clean bill of health, I have had the immense satisfaction of facing my fear, doing what needed to be done and coming out the other side successful. I feel really good about myself, and my life is that much brighter for having gone through a dark time.
I’ve tried to remain available to help new HCV patients coming down the pike, and have done a bit of advocacy work, but mostly these days I am doing my best to live, live, live. I can’t believe how much energy I have! I didn’t ask for Hepatitis C but I believe in the old cliché about making lemonade when life deals you lemons. It has brought unexpected and wonderful rewards, and I wouldn’t have it any other way.
Monday, March 22, 2010
Daves' Story
"I was diagnosed in the late 1990's and had a biopsy in 2003. I didn't get the results until 2008 as the specialist left the country right after my first biopsy. I was floated around the medical system with them telling me I had heart problems (not) that would make treatment difficult. I finally got into the Toronto liver clinic (excellent place) and they had accepted me in a clinical study starting pegintron/ribovarin in Oct 2008. The day I was to start they told me I had liver cancer and would be operated on in December. It was a successful radio frequency abolation but was informed no treatment until 6 months free of cancer. I could not go on the treatment until June 2009 and cannot participate in any clinical studies as I am now deemed cancerous. I was a fast responder then got very sick on the treatment and needed a hemoglobin transfusion (I was getting epo injections with my pegintron) during which I caught c-diff in the hospital. That ended the treatment and I have been getting stronger (9 months later) and maybe can redo the treatment in the fall. The treatment was worse than the virus and I still have some residual effects...dry eyes, abdominal pain, brain fog, etc but reganing lost muscle mass and some hair, not looking as yellow. I have recently experienced portal hypertension, a good sign that my liver is getting worse. I am not a transplant candidate as I still have 30% liver function.
Saturday, March 20, 2010
My Personal Hepatitis C Story
I live in South Florida between Miami and Ft. Lauderdale. Had been going to a primary care doctor and having annual physicals with all the blood work. It got so I was waiting 2 hours to see my primary care physician when my mom told me she had found a doctor she liked so I said why not and went to see him. He did my annual physical and when I went back for the results of the blood work he said “your liver enzymes are elevated and you have hepatitis c”. I guess if I had not changed primary care physicians I would have not found out until my liver failed! He referred me to a gastro and sent me home.
I went on the internet and started searching for what was hepatitis c and found all these horror stories of the treatment and the effects of the disease. I called my mom and my husband and said “I’m dying!”. My good old mom called the doctor’s office and screamed at him and said how could you send her home with no information?
The gastroenterologist I had been referred to could not see me for over a month and I was not waiting, I wanted answers now. I found another gastro and made an appointment. When I went into see her she stared with conversation like “the statistics are 50/50, you cannot eat shellfish and now you must go down and get a liver biopsy”. I left there in shock.
I had not cancelled my appointment with the gastro I was referred to and went to see him. What a difference in that appointment from the first gastro I went to see. He explained to me the treatment and said he was doing a study and he could provide my meds for free but that I would have to agree to let him follow me for 5 years. He said I needed a liver biopsy to see where my liver was and some blood tests to see my viral load and how my liver was functioning at this point. I said oh no, I’m not letting you do a liver biopsy. Well, he walked out of the room and said well I won’t treat you. I went running down the hall after him going wait wait LOL
I did all the tests and had the liver biopsy. I’m phobic with needles and blood and made myself a wreck before that liver biopsy. That was the worst part of my liver biopsy, me making myself a wreck. They gave me something before hand to settle my nerves and I did get a punch in the shoulder feeling but besides the fact that I had to lay on my side for hours in boredom it was a pretty uneventful procedure.
The result of those tests was that my liver was grade 3/stage 2 - half way to cirrhosis. Blood work revealed that I was genotype 1A, alt and ast was in the high 50s and my viral load was 1 million. I decided I was going to try and kill this virus if I could; figured if I could not take the treatment I would stop but I was going to at least try.
My doctor’s study nurse brought me to the office and showed me how to mix up the pegalated interferon alpha 2B, it came in 2 bottles with 2 syringes. She demonstrated on an orange and handed me a video and a card with the steps. I also was to take 5 ribavarin daily. That was that.
I got home, wiped off the counter with alcohol and couldn’t get the cap off the syringe, jabbed it into my thumb and was bleeding all over the place before I even started. I found a forum I had been going into for support and went online and they talked me through the process. Don’t know what I would have done without those people!
After the shot I took some alleve and went to bed. The next day I had a slight fever and felt pretty wiped out and just slept most of the day.
I did complete all 48 weeks of shots and continued working except the last 6 weeks where I had to take a leave because I became very anemic. First 6 months was not so bad as I did my shot late Friday night and was off the weekends so I rested. After the first 6 months my blood counts just plummeted. The doctor did start me on procrit to raise my counts but it did not do much I was so far gone and almost done with the 48 weeks. Towards the end of treatment I did not do much except lay on the couch. I did clear the virus at 12 weeks.
I was diagnosed the end of 2001 and started treatment in early 2002 and finished Friday, December 13th, 2002….I have been clear ever since.
Treatment was not a walk in the park, it was hard not just for me but for my whole family. I was depressed, lost a lot of my hair and was miserable most of the time, but it was doable. I kept telling myself that it was not forever, it was just a year…I told myself this over and over again LOL
I ran a Delphi support forum for about 5 years but have since stopped that. Figured I had given back what I had gotten and wanted to move on and start living again. I also participated actively in the March on DC for about 4 years, which was a wonderful event and great to meet others going through the same thing. I have organized several Hep C Festivals here in South Florida and in the middle of Florida.
I continue to support others one on one or by email. I also spread the word by telling people I have this disease and that everybody should be tested. I had no clue about this disease when I was diagnosed, knowledge is power. The best part of helping a newly diagnosed person is letting them know that it is ok, nothing to be ashamed of and they will be shocked to know how many actually have this disease…if they just ask or mention they have it. More die with HCV than of it.
I went on the internet and started searching for what was hepatitis c and found all these horror stories of the treatment and the effects of the disease. I called my mom and my husband and said “I’m dying!”. My good old mom called the doctor’s office and screamed at him and said how could you send her home with no information?
The gastroenterologist I had been referred to could not see me for over a month and I was not waiting, I wanted answers now. I found another gastro and made an appointment. When I went into see her she stared with conversation like “the statistics are 50/50, you cannot eat shellfish and now you must go down and get a liver biopsy”. I left there in shock.
I had not cancelled my appointment with the gastro I was referred to and went to see him. What a difference in that appointment from the first gastro I went to see. He explained to me the treatment and said he was doing a study and he could provide my meds for free but that I would have to agree to let him follow me for 5 years. He said I needed a liver biopsy to see where my liver was and some blood tests to see my viral load and how my liver was functioning at this point. I said oh no, I’m not letting you do a liver biopsy. Well, he walked out of the room and said well I won’t treat you. I went running down the hall after him going wait wait LOL
I did all the tests and had the liver biopsy. I’m phobic with needles and blood and made myself a wreck before that liver biopsy. That was the worst part of my liver biopsy, me making myself a wreck. They gave me something before hand to settle my nerves and I did get a punch in the shoulder feeling but besides the fact that I had to lay on my side for hours in boredom it was a pretty uneventful procedure.
The result of those tests was that my liver was grade 3/stage 2 - half way to cirrhosis. Blood work revealed that I was genotype 1A, alt and ast was in the high 50s and my viral load was 1 million. I decided I was going to try and kill this virus if I could; figured if I could not take the treatment I would stop but I was going to at least try.
My doctor’s study nurse brought me to the office and showed me how to mix up the pegalated interferon alpha 2B, it came in 2 bottles with 2 syringes. She demonstrated on an orange and handed me a video and a card with the steps. I also was to take 5 ribavarin daily. That was that.
I got home, wiped off the counter with alcohol and couldn’t get the cap off the syringe, jabbed it into my thumb and was bleeding all over the place before I even started. I found a forum I had been going into for support and went online and they talked me through the process. Don’t know what I would have done without those people!
After the shot I took some alleve and went to bed. The next day I had a slight fever and felt pretty wiped out and just slept most of the day.
I did complete all 48 weeks of shots and continued working except the last 6 weeks where I had to take a leave because I became very anemic. First 6 months was not so bad as I did my shot late Friday night and was off the weekends so I rested. After the first 6 months my blood counts just plummeted. The doctor did start me on procrit to raise my counts but it did not do much I was so far gone and almost done with the 48 weeks. Towards the end of treatment I did not do much except lay on the couch. I did clear the virus at 12 weeks.
I was diagnosed the end of 2001 and started treatment in early 2002 and finished Friday, December 13th, 2002….I have been clear ever since.
Treatment was not a walk in the park, it was hard not just for me but for my whole family. I was depressed, lost a lot of my hair and was miserable most of the time, but it was doable. I kept telling myself that it was not forever, it was just a year…I told myself this over and over again LOL
I ran a Delphi support forum for about 5 years but have since stopped that. Figured I had given back what I had gotten and wanted to move on and start living again. I also participated actively in the March on DC for about 4 years, which was a wonderful event and great to meet others going through the same thing. I have organized several Hep C Festivals here in South Florida and in the middle of Florida.
I continue to support others one on one or by email. I also spread the word by telling people I have this disease and that everybody should be tested. I had no clue about this disease when I was diagnosed, knowledge is power. The best part of helping a newly diagnosed person is letting them know that it is ok, nothing to be ashamed of and they will be shocked to know how many actually have this disease…if they just ask or mention they have it. More die with HCV than of it.
Friday, March 19, 2010
Terrie's Story
I'm a 48 year old woman, living in the mountains of N.W. Montana. I was diagnosed in April '06 after a routine annual exam. My liver enzymes were elevated so we tested for Hepatitis. I had just had a friend who had passed due to years of fighting the virus only 6 months prior, so I was already aware of HCV. My best friend and her husband had also tested positive for HCV, but she was unable to be genotyped and shows no viral load, so she must have spontaneously cleared.
Anyway, I digress. When I was diagnosed, it wiped me out. I was vocal with my friends about the virus and found I had other friends who had undergone treatment and there was one who had been diagnosed a few months prior to me and was undergoing treatment. Cancer had taken hold of him and treatment had been unsuccessful. I saw him when he was jaundiced and fighting accites which rocked me to my core and scared me more than anything. He subsequently passed about 1 month after I saw him. Another devastating blow.
I was surprised by how many people had it, but no one talked about it. The stigma is so strong, even when the public knowledge is minimal. People are so afraid of being judged for having an illness that may have been contracted by drug use, even if it was only one time or done years ago.
Back to me, I was genotyped as 4. That was another surprise since it is so rare in the U.S. I had used IV drugs in the 70s and had dabbled in snorting drugs into the early 80s. Along with the drug use was a sexually permissiveness that could have been a means of contracting it, but those didn't feel right.
I had been hit by a car in 1963, the day before my 2nd birthday and had massive internal injuries including a ruptured liver, which led to large blood transfusions.
Upon researching genotype 4 populations in this country I found there just happens to be one of the two main populations in Minnesota where my accident occurred. So, I'm pretty sure that's where I contracted this. Genotype 4 is slower progressing, but is treated here the same as 1a. It tends to be resistant to treatment. The research regarding genotype 4 is occurring in Egypt, where it is the prevalent genotype. (I have never been to Egypt or known anyone who has been there.)
I was on chronic pain management at the time I was diagnosed for back pain, taking opioids and muscle relaxers. My first GI wanted me to begin treatment right away, but I had a problem with the way he treated me as a person, so I sought another doctor. I found another one who thought I was doing quite well. If my accident had been my means of transmission, my body has fought this all of my life and faired pretty well. He informed me that if I did want to do treatment that it tended to be unsuccessful when opioids were used as pain meds. I weaned myself from my pain med addiction and am now free of them. That doctor turned out to not meet my expectations and now I'm on my third. I refuse to be marginalized or treated as less than worthy of the best care. I'm so fortunate to have a supportive husband and son along with adequate health insurance to cover my expenses.
I started reading as much as I could about HCV and various types of treatment. Having two friends pass due to this virus even after conventional treatment scared me, so I have opted for the time being to use herbal therapy.
I seem to be doing well on herbal therapy, at least as far as I can tell. My liver panels have all been in the normal range since I began and my viral load tests have all come back lower each year. The second year, it had dropped by half, to just under 2 million. I'm getting my yearly viral load test done again on Friday, which is always anxiety inducing. I just keep hoping this is still working for me. I'll be ready for my second biopsy next year unless this test indicates I need it sooner.
This has been a blessing in disguise. I have cleaned up my diet, quit drinking, smoking and taking pain meds. I exercise regularly and am attempting to lose the weight I've allowed to build up over the years, especially what I've gained since I quit smoking. I have gardened for years and eaten organically as much as possible. Since we live so rurally, I do all the cooking so I don't deal with fast food or restaurants much. We're fortunate to live in an amazingly healthy environment.
One of the things that bother me most is the thought that I have passed this virus on to other without ever knowing it. I realize it was not intentional, however if there was adequate public awareness of this then fewer people would inadvertently be infected. I was terrified I had passed this to my son at birth (I had a Cesarean Section and the presence of blood to a new born is a huge risk) He tested negative, thank God. My husband has not been tested, but that's his choice. We treat all blood spills, even what most people would think as nothing, as biohazard. Can't be too careful.
I am a member of Debbullan, Inc. Board of Directors and take every opportunity I can to spread information about this virus. I speak openly to everyone about my having it and how I may have gotten it. If I'm stigmatized by this, it's out of ignorance, and I aim to combat that. I’m a substitute teacher for a small Jr. High/ High school and most of the kids, a student body of about 300, know that I have HCV and how it's transmitted. With so much piercing and tattooing among today's youth they need to be informed.
So, there's my story thus far. I hope this is helpful to others. I'm always happy to answer questions about HCV, my experience with it, how I'm treating it, and coping.
Anyway, I digress. When I was diagnosed, it wiped me out. I was vocal with my friends about the virus and found I had other friends who had undergone treatment and there was one who had been diagnosed a few months prior to me and was undergoing treatment. Cancer had taken hold of him and treatment had been unsuccessful. I saw him when he was jaundiced and fighting accites which rocked me to my core and scared me more than anything. He subsequently passed about 1 month after I saw him. Another devastating blow.
I was surprised by how many people had it, but no one talked about it. The stigma is so strong, even when the public knowledge is minimal. People are so afraid of being judged for having an illness that may have been contracted by drug use, even if it was only one time or done years ago.
Back to me, I was genotyped as 4. That was another surprise since it is so rare in the U.S. I had used IV drugs in the 70s and had dabbled in snorting drugs into the early 80s. Along with the drug use was a sexually permissiveness that could have been a means of contracting it, but those didn't feel right.
I had been hit by a car in 1963, the day before my 2nd birthday and had massive internal injuries including a ruptured liver, which led to large blood transfusions.
Upon researching genotype 4 populations in this country I found there just happens to be one of the two main populations in Minnesota where my accident occurred. So, I'm pretty sure that's where I contracted this. Genotype 4 is slower progressing, but is treated here the same as 1a. It tends to be resistant to treatment. The research regarding genotype 4 is occurring in Egypt, where it is the prevalent genotype. (I have never been to Egypt or known anyone who has been there.)
I was on chronic pain management at the time I was diagnosed for back pain, taking opioids and muscle relaxers. My first GI wanted me to begin treatment right away, but I had a problem with the way he treated me as a person, so I sought another doctor. I found another one who thought I was doing quite well. If my accident had been my means of transmission, my body has fought this all of my life and faired pretty well. He informed me that if I did want to do treatment that it tended to be unsuccessful when opioids were used as pain meds. I weaned myself from my pain med addiction and am now free of them. That doctor turned out to not meet my expectations and now I'm on my third. I refuse to be marginalized or treated as less than worthy of the best care. I'm so fortunate to have a supportive husband and son along with adequate health insurance to cover my expenses.
I started reading as much as I could about HCV and various types of treatment. Having two friends pass due to this virus even after conventional treatment scared me, so I have opted for the time being to use herbal therapy.
I seem to be doing well on herbal therapy, at least as far as I can tell. My liver panels have all been in the normal range since I began and my viral load tests have all come back lower each year. The second year, it had dropped by half, to just under 2 million. I'm getting my yearly viral load test done again on Friday, which is always anxiety inducing. I just keep hoping this is still working for me. I'll be ready for my second biopsy next year unless this test indicates I need it sooner.
This has been a blessing in disguise. I have cleaned up my diet, quit drinking, smoking and taking pain meds. I exercise regularly and am attempting to lose the weight I've allowed to build up over the years, especially what I've gained since I quit smoking. I have gardened for years and eaten organically as much as possible. Since we live so rurally, I do all the cooking so I don't deal with fast food or restaurants much. We're fortunate to live in an amazingly healthy environment.
One of the things that bother me most is the thought that I have passed this virus on to other without ever knowing it. I realize it was not intentional, however if there was adequate public awareness of this then fewer people would inadvertently be infected. I was terrified I had passed this to my son at birth (I had a Cesarean Section and the presence of blood to a new born is a huge risk) He tested negative, thank God. My husband has not been tested, but that's his choice. We treat all blood spills, even what most people would think as nothing, as biohazard. Can't be too careful.
I am a member of Debbullan, Inc. Board of Directors and take every opportunity I can to spread information about this virus. I speak openly to everyone about my having it and how I may have gotten it. If I'm stigmatized by this, it's out of ignorance, and I aim to combat that. I’m a substitute teacher for a small Jr. High/ High school and most of the kids, a student body of about 300, know that I have HCV and how it's transmitted. With so much piercing and tattooing among today's youth they need to be informed.
So, there's my story thus far. I hope this is helpful to others. I'm always happy to answer questions about HCV, my experience with it, how I'm treating it, and coping.
Tuesday, March 16, 2010
Daryl's Story
I would like to begin my story with a salute to all of those people that have helped me, and others. Diagnosed with HCV, it has never mattered to me how someone was infected. I know people that used drugs and shared needles, as well as people that have received the virus through tainted blood transfusions, and none of it matters to me. What matters most is that people with HCV need help, and that help takes many forms. I am fortunate enough not to have the severe financial burden that many with this disease face. I can’t imagine what it must feel like to face HCV without medical options as well as any semblance of a support system, which I believe is so very important. I am deeply discouraged by the stigma that we all face when we are diagnosed with HCV.
I never knew many things about this disease until I was diagnosed. I began a journey toward understanding and knowledge, and ultimately ridding my body of this terrible virus. The journey actually began when I was hospitalized two years ago with extreme abdominal pain. After three days in the hospital, and many scans and tests later, all that they came up with was that I needed to have a hernia repair. They asked several times “why was I there”. I am otherwise a healthy person, with the exception of having asthma that is treated successfully.
In the next several months I underwent many tests that included colonoscopy, gastroscopy, many blood tests, a CT scan, and finally while being pre-screened for the hernia repair it was discovered that my iron levels were high. This finally led my primary care doctor to check for hepatitis with more blood work. The preliminary screen showed that I might have the virus. The second blood test confirmed that I did have HepC. That was in July 2009.
I was devastated by this news. The next couple of months were very difficult for me. In my mind my life was over. I am 55 years old, with so much I want to do in my life, and now I am going to die. That went through my mind over and over. As I began to research the virus, it didn’t get much better, because it seemed like it was all bad news. I was obsessed with it, and I couldn’t get it off my mind.
The next step was to see a Hepatologist. More blood work was ordered to determine my genotype, etc. It came back as genotype 1b, and I was told that it was the most resistant to treatment. It was just more bad news. It seemed like that was the only news I was going to get. The next step was a liver biopsy in early December 2009. That produced some good news about my liver. I was happy to learn that I was stage 0-1, which means that there is little damage to my liver from the disease. I was so happy to finally hear something positive, and it was a great relief for my wife and family. The next step was to plan for treatment. I was asked if I would be interested in participating in a drug trial along with standard treatment. The Hepatologist gave me three options actually. The first was to do nothing, the second was standard treatment, and the third was with the drug trial. I decided that I would go into the trial because the drug had shown a substantial increased chance of clearing the virus, and reaching SVR. Since deciding to be a part of the trial I have undergone many screening tests to determine if I am suitable. The only thing they found during screening was that I have a condition called optic nerve drusen.
I am scheduled to start treatment in a few days, and as far as I know I have been accepted to participate. As I begin the next stage of my journey, I have a sense of relief mixed with anxiety about how the drugs affect me. I want to continue to work as much as I can, and keep my life as real as possible. I want to continue to be myself, and not be defined by this disease. Something that is very important to me is that there be more awareness and education about HCV so that people will get tested, get treated, and get better, without all of the added burden of stigma, isolation, and financial hardship.
Update on Daryl's Treatment Journey
Update of my story as of April 18, 2010
Day 31 of treatment for HCV, genotype 1a
Clinical Trial with new drug and SOC
I started treatment March 19th. It was a little scary, but I had long since made up my mind to treat. Determined I was. Because I am in a clinical trial, the first shot was done at the Institute where I am being treated, and that made it a little easier. I had no side effects until on the third day. It started with itchiness not unfamiliar to me, and progressed to the point that night where I felt the side effects that are often called flu-like. Worse flu I ever had.
For the next week and a half I had all kinds of strange things going on all over my body. I had severe shivers, and periods not long after taking the Copegus, where I felt extremely hyper. Another strange sensation was that everything smelled toxic, including me. I joked with my wife that I was a walking toxic waste dump. I use humor to deal with adversity, sometimes it works for me. Because of the smells, I could not, did not, want to eat. I lost 8 pounds in 9 days. I used ensure, drank lots of water and Gatorade, and by the second week my sense of smell started to return. I have since gotten my appetite back somewhat, and stopped the weight loss. Since then I have had an easier time with the treatment than I had in those first couple of weeks. I am not saying it was easy, and it still is not easy. I have months of treatment ahead. I have had some severe pain from an old injury, and we had to sort that out with the right meeds.That was not easy, and in fact was quite unpleasant. I have also had bouts of crying and incidents of rage, but I have wrestled with that fairly well so far.
My short term memory is very bad, and I hope it returns after treatment stops.
Having said all that, it has been generally tolerable so far. I do get some relief now and again from feeling sick and extremely tired. Some of the time I even feel better than I did before treatment started. I had suffered with symptoms from Chronic HCV for a while before diagnosis and treatment started.
One thing that has made it all much easier for me is the warmth and friendship I have found in a community of people at Janis and Friends. Betty has become a dear friend, and an inspiration to me. These people have saved my life. My wife has been solid as a rock behind me all the way in this journey; I could not have managed without her love and kindness. There are others, including my treatment nurse, the doctors, and on and on…there have been many. I am blessed for that. I also know how lucky I have been, and never lose sight of the reality that many are not so lucky in dealing with HCV. This saddens me.
At my two week tests, my viral load had dropped by 2.85 logs. It had come down from over 5 million to 7000 in two weeks. Given my genotype, this is apparently very good news by all accounts. This information was magic to me. I am convinced that I am getting the new drugs in the trial, not the placebo. I am in touch with others in the same trial that have experienced similar results. Not all have, unfortunately.
I want to say that there is hope for the future with new treatments. With any luck, some of these drugs are near approval for use with the current the SOC treatment.
We have a long road ahead, and I know it will not be an easy time. We need to raise awareness, educate, and bring the resources needed, to the people with this awful disease. The stigma and ignorance will be present for some time to come I am afraid. But if we talk about it, and keep a dialogue going, the narrative will change in time. It is my dream that some day we will be able to look back on our hard-fought battles with pride and dignity. And HCV will be a thing of the past. I hope that the politicians and decision-makers hear our message loud and clear.
We all need to help each other. We all deserve, as human beings, to have a chance to have good health. This is a basic human right in my opinion. I hope that I am successful in spreading hope to those in this community, and beyond, to include the families and friends of those infected.
Although it seems like there is no hope at times, and Oh- how I know how that feels. There is hope, and I believe it strongly.
I must..............
I never knew many things about this disease until I was diagnosed. I began a journey toward understanding and knowledge, and ultimately ridding my body of this terrible virus. The journey actually began when I was hospitalized two years ago with extreme abdominal pain. After three days in the hospital, and many scans and tests later, all that they came up with was that I needed to have a hernia repair. They asked several times “why was I there”. I am otherwise a healthy person, with the exception of having asthma that is treated successfully.
In the next several months I underwent many tests that included colonoscopy, gastroscopy, many blood tests, a CT scan, and finally while being pre-screened for the hernia repair it was discovered that my iron levels were high. This finally led my primary care doctor to check for hepatitis with more blood work. The preliminary screen showed that I might have the virus. The second blood test confirmed that I did have HepC. That was in July 2009.
I was devastated by this news. The next couple of months were very difficult for me. In my mind my life was over. I am 55 years old, with so much I want to do in my life, and now I am going to die. That went through my mind over and over. As I began to research the virus, it didn’t get much better, because it seemed like it was all bad news. I was obsessed with it, and I couldn’t get it off my mind.
The next step was to see a Hepatologist. More blood work was ordered to determine my genotype, etc. It came back as genotype 1b, and I was told that it was the most resistant to treatment. It was just more bad news. It seemed like that was the only news I was going to get. The next step was a liver biopsy in early December 2009. That produced some good news about my liver. I was happy to learn that I was stage 0-1, which means that there is little damage to my liver from the disease. I was so happy to finally hear something positive, and it was a great relief for my wife and family. The next step was to plan for treatment. I was asked if I would be interested in participating in a drug trial along with standard treatment. The Hepatologist gave me three options actually. The first was to do nothing, the second was standard treatment, and the third was with the drug trial. I decided that I would go into the trial because the drug had shown a substantial increased chance of clearing the virus, and reaching SVR. Since deciding to be a part of the trial I have undergone many screening tests to determine if I am suitable. The only thing they found during screening was that I have a condition called optic nerve drusen.
I am scheduled to start treatment in a few days, and as far as I know I have been accepted to participate. As I begin the next stage of my journey, I have a sense of relief mixed with anxiety about how the drugs affect me. I want to continue to work as much as I can, and keep my life as real as possible. I want to continue to be myself, and not be defined by this disease. Something that is very important to me is that there be more awareness and education about HCV so that people will get tested, get treated, and get better, without all of the added burden of stigma, isolation, and financial hardship.
Update on Daryl's Treatment Journey
Update of my story as of April 18, 2010
Day 31 of treatment for HCV, genotype 1a
Clinical Trial with new drug and SOC
I started treatment March 19th. It was a little scary, but I had long since made up my mind to treat. Determined I was. Because I am in a clinical trial, the first shot was done at the Institute where I am being treated, and that made it a little easier. I had no side effects until on the third day. It started with itchiness not unfamiliar to me, and progressed to the point that night where I felt the side effects that are often called flu-like. Worse flu I ever had.
For the next week and a half I had all kinds of strange things going on all over my body. I had severe shivers, and periods not long after taking the Copegus, where I felt extremely hyper. Another strange sensation was that everything smelled toxic, including me. I joked with my wife that I was a walking toxic waste dump. I use humor to deal with adversity, sometimes it works for me. Because of the smells, I could not, did not, want to eat. I lost 8 pounds in 9 days. I used ensure, drank lots of water and Gatorade, and by the second week my sense of smell started to return. I have since gotten my appetite back somewhat, and stopped the weight loss. Since then I have had an easier time with the treatment than I had in those first couple of weeks. I am not saying it was easy, and it still is not easy. I have months of treatment ahead. I have had some severe pain from an old injury, and we had to sort that out with the right meeds.That was not easy, and in fact was quite unpleasant. I have also had bouts of crying and incidents of rage, but I have wrestled with that fairly well so far.
My short term memory is very bad, and I hope it returns after treatment stops.
Having said all that, it has been generally tolerable so far. I do get some relief now and again from feeling sick and extremely tired. Some of the time I even feel better than I did before treatment started. I had suffered with symptoms from Chronic HCV for a while before diagnosis and treatment started.
One thing that has made it all much easier for me is the warmth and friendship I have found in a community of people at Janis and Friends. Betty has become a dear friend, and an inspiration to me. These people have saved my life. My wife has been solid as a rock behind me all the way in this journey; I could not have managed without her love and kindness. There are others, including my treatment nurse, the doctors, and on and on…there have been many. I am blessed for that. I also know how lucky I have been, and never lose sight of the reality that many are not so lucky in dealing with HCV. This saddens me.
At my two week tests, my viral load had dropped by 2.85 logs. It had come down from over 5 million to 7000 in two weeks. Given my genotype, this is apparently very good news by all accounts. This information was magic to me. I am convinced that I am getting the new drugs in the trial, not the placebo. I am in touch with others in the same trial that have experienced similar results. Not all have, unfortunately.
I want to say that there is hope for the future with new treatments. With any luck, some of these drugs are near approval for use with the current the SOC treatment.
We have a long road ahead, and I know it will not be an easy time. We need to raise awareness, educate, and bring the resources needed, to the people with this awful disease. The stigma and ignorance will be present for some time to come I am afraid. But if we talk about it, and keep a dialogue going, the narrative will change in time. It is my dream that some day we will be able to look back on our hard-fought battles with pride and dignity. And HCV will be a thing of the past. I hope that the politicians and decision-makers hear our message loud and clear.
We all need to help each other. We all deserve, as human beings, to have a chance to have good health. This is a basic human right in my opinion. I hope that I am successful in spreading hope to those in this community, and beyond, to include the families and friends of those infected.
Although it seems like there is no hope at times, and Oh- how I know how that feels. There is hope, and I believe it strongly.
I must..............
Monday, March 15, 2010
Lisa's Story
Hi all. My name is Lisa. I am a white 52-year-old female genotype 1b grade 1 stage 0. I was diagnosed about 7 years ago and almost lost it. I couldn't believe it. My gastro said wait for a better treatment to come out since my biopsy revealed little damage. For several years I had symptoms of hep c exhibiting as rollout. it was very painful, interfered with work and personal life, and no Dr. knew what I had. I was misdiagnosed for 2 years, got fed up, and diagnosed myself with the help of the Internet. That kick started my treatment Sept. 11 2009. Good Lord, talk about being hit by a train!!!! I consider myself a tough cookie and have been through a lot of trauma in my life. but I was not at all prepared for the fatigue, malaise, pain, nausea, loss of appetite, etc. etc. that followed. I was already on anti-depressants when I started treatment and thought that was sufficient. Two months of crying and suicidal thoughts took me back to my Dr. who prescribed extra anti-depressants. they saved my life. truly.
It's been the battle of a lifetime. As bad as my two divorces, but isolating. I was thinking about it today....a friend I know broke her fingers and required surgery. She is able to talk about it to anyone and share and they can see and understand her pain. Our pain is hidden. No one sees it or can feel it. they don't understand the brain fog, the digestive problems, persistent fatigue, insomnia, etc., and we are really isolated. Personally I don't talk about it to anyone for fear of being judged. I am single and that has a lot to do with it. I protect myself from whatever makes me unhappy or scared and people just plain don't understand hep c or the debilitating effects of the treatment like they do chemo.
I started to feel better around week 10. The first 10 weeks all I could do was work and sleep. I had to sleep 12 hours a day and on my days off I would sleep 16 hours or more. I went over to my mom's house for dinner because I was too tired to cook or shop. Thank goodness I got better, but very gradually. I work at it like crazy. I read uplifting things, try to do things that make me happy, don't do anything outside of work that requires energy I don't have. sometimes I get tired of not having a life, but then I try to remember that this treatment is working for me and how blessed I am that it does. there are so many hep c folks that treatment doesn't work for. I don't read depressing articles about hep c even though everyone says you should be informed. I am informed more about nutrition and exercise and what I can do to make my body healthy. I try to put my energy into things I have control over and not worry about what I don't or can't control.
This is not to say it's a cakewalk now. I've been so tired this past month I haven't performed well at work and I have too many days where I just have a complete breakdown--physically, emotionally, spiritually--you name it. Then I have to rebuild. I let myself cry if I need it, but not too long. I see a therapist. I get a massage. I hug dogs. I remember that one day I will live again and actually have a life. That will be amazing. I try to be grateful for what I have.
The journey isn't just an assault on your body. your spirit, your soul, your thoughts, your brain--they all change as well. It is such a cataclysmic shift it's hard to adjust.
I have become a kinder, more compassionate person through this. I have learned to forgive myself. I have learned to set limits and say 'no.' I have learned that life isn't perfect or fair and that's just the way it is. I have learned every person with hep c is different and what works for me won't necessarily work for you. Find your path. I even write down what works for me because my brain forgets stuff all the time.
Slough off the stuff that doesn't matter. I finally stopped shaving my legs because I don't have the energy and who the hell will see anyway? I let go of being perfect and desirable all the time. My skin is like a snake's and I am pretty pale. When I get tired, really tired, I just cannot function. I must go to bed. take care of myself.
I have one good friend I bitch to a little, but everyone has their limits. mostly there is no one who wants to hear every freakin' detail of what aggravates you and the downfalls of the treatment, so I write poems about how I feel and that helps. I try not to abuse my friends and family with complaints. it isn't their job to carry me and they won't anyway, they can't. it's my journey.
well, I have certainly rambled a lot here. if this helps just one person, I feel the treatment will have all been worth it. I found a great friend on Janis & Friends who was so compassionate he made me cry. the websites are invaluable. Great resources and always someone to listen.
It's been the battle of a lifetime. As bad as my two divorces, but isolating. I was thinking about it today....a friend I know broke her fingers and required surgery. She is able to talk about it to anyone and share and they can see and understand her pain. Our pain is hidden. No one sees it or can feel it. they don't understand the brain fog, the digestive problems, persistent fatigue, insomnia, etc., and we are really isolated. Personally I don't talk about it to anyone for fear of being judged. I am single and that has a lot to do with it. I protect myself from whatever makes me unhappy or scared and people just plain don't understand hep c or the debilitating effects of the treatment like they do chemo.
I started to feel better around week 10. The first 10 weeks all I could do was work and sleep. I had to sleep 12 hours a day and on my days off I would sleep 16 hours or more. I went over to my mom's house for dinner because I was too tired to cook or shop. Thank goodness I got better, but very gradually. I work at it like crazy. I read uplifting things, try to do things that make me happy, don't do anything outside of work that requires energy I don't have. sometimes I get tired of not having a life, but then I try to remember that this treatment is working for me and how blessed I am that it does. there are so many hep c folks that treatment doesn't work for. I don't read depressing articles about hep c even though everyone says you should be informed. I am informed more about nutrition and exercise and what I can do to make my body healthy. I try to put my energy into things I have control over and not worry about what I don't or can't control.
This is not to say it's a cakewalk now. I've been so tired this past month I haven't performed well at work and I have too many days where I just have a complete breakdown--physically, emotionally, spiritually--you name it. Then I have to rebuild. I let myself cry if I need it, but not too long. I see a therapist. I get a massage. I hug dogs. I remember that one day I will live again and actually have a life. That will be amazing. I try to be grateful for what I have.
The journey isn't just an assault on your body. your spirit, your soul, your thoughts, your brain--they all change as well. It is such a cataclysmic shift it's hard to adjust.
I have become a kinder, more compassionate person through this. I have learned to forgive myself. I have learned to set limits and say 'no.' I have learned that life isn't perfect or fair and that's just the way it is. I have learned every person with hep c is different and what works for me won't necessarily work for you. Find your path. I even write down what works for me because my brain forgets stuff all the time.
Slough off the stuff that doesn't matter. I finally stopped shaving my legs because I don't have the energy and who the hell will see anyway? I let go of being perfect and desirable all the time. My skin is like a snake's and I am pretty pale. When I get tired, really tired, I just cannot function. I must go to bed. take care of myself.
I have one good friend I bitch to a little, but everyone has their limits. mostly there is no one who wants to hear every freakin' detail of what aggravates you and the downfalls of the treatment, so I write poems about how I feel and that helps. I try not to abuse my friends and family with complaints. it isn't their job to carry me and they won't anyway, they can't. it's my journey.
well, I have certainly rambled a lot here. if this helps just one person, I feel the treatment will have all been worth it. I found a great friend on Janis & Friends who was so compassionate he made me cry. the websites are invaluable. Great resources and always someone to listen.
My Hepatitis C Story
I am a 55 year old female. I had recently moved and went to get hooked up with a new family doctor. As part of his blood panel he ordered liver enzymes and mine were elevated. ALT was in the 90's. 6 months later he checked again and they were still elevated even more. ALT at 190. HE did the screening test for Hep C and I had it. I have never had any symptoms.
It was of course quite a shock.
I was diagnosed 2/10. Biopsied 3/10- stage 0 to 1, grade 3 . I had been a frequent wine drinker. My doctor thinks I have been infected for a long time but had little progression.
I began treatment 5/10 at a local teaching hospital with a hepatology department.
Before deciding to treat, I had all the concerns everyone has. Will the meds do lasting damage? How bad will the side effects be? Can I still work?
I made it a point to learn all I could. I researched based on my personal odds of clearing the virus and decided to treat now as I have great medical coverage and want to retire soon.
I am genotype 3a so I treated for 6 months. Used Pegasus and RIbiviran 1000 mg ( at my request as this was weight based and the research I have read indicated this would give me the best odds to clear the virus)
I had minimal side effects during treatment. Anemia and fatigue were the most notable. Procrit was used to deal with the anemia. I did not takes any meds for anxiety or depression. I never experienced any of the psychological issues associated with the treatment meds. Most other side effects were annoyances. I just didn't like that the meds made me feel edgy and hyper. I missed only 2 days of work in the 6 months.
So far my treatment appears to be successful. During treatment the virus was undetectable at week 4 so I had rapid viral response and it has remain undetected. I was still clear on my 3 month post treatment tests.
I would do it again if I had to.
It was of course quite a shock.
I was diagnosed 2/10. Biopsied 3/10- stage 0 to 1, grade 3 . I had been a frequent wine drinker. My doctor thinks I have been infected for a long time but had little progression.
I began treatment 5/10 at a local teaching hospital with a hepatology department.
Before deciding to treat, I had all the concerns everyone has. Will the meds do lasting damage? How bad will the side effects be? Can I still work?
I made it a point to learn all I could. I researched based on my personal odds of clearing the virus and decided to treat now as I have great medical coverage and want to retire soon.
I am genotype 3a so I treated for 6 months. Used Pegasus and RIbiviran 1000 mg ( at my request as this was weight based and the research I have read indicated this would give me the best odds to clear the virus)
I had minimal side effects during treatment. Anemia and fatigue were the most notable. Procrit was used to deal with the anemia. I did not takes any meds for anxiety or depression. I never experienced any of the psychological issues associated with the treatment meds. Most other side effects were annoyances. I just didn't like that the meds made me feel edgy and hyper. I missed only 2 days of work in the 6 months.
So far my treatment appears to be successful. During treatment the virus was undetectable at week 4 so I had rapid viral response and it has remain undetected. I was still clear on my 3 month post treatment tests.
I would do it again if I had to.
Sunday, March 14, 2010
A soul search in the mountains
Forget all the what-abouts, the medical field has left me having to be a human lab rat. Loving all animals, now I know what my four legged brother and sisters go through. Ha!
Being raised a teenager in the late 1960's and early 1970's by a totally dysfunctional step-father and mother who were either always in Europe with my step-sister or telling me to go to my room or outside, put my young mind in motion to the acceptance of always being alone, never having attention from the woman who's womb I climbed out of and building my self-confidence, standards and morals on actions I thought, at that time, to be good. At 16 years old my parents took me to court and had me emancipated because they got tired of me running away from home and not knowing how to live a family life. Sleeping in gas station bathrooms, the woods and under bridge over-passes did not assist my growth as a young woman, so yes, I grabbed a hold of what ever lifestyle and whom ever would put a roof over my head and food in my mouth and at the least, pretend they cared about me. After many surgeries which lead to a full hysterectomy, a few tasteful tattoos and walking down the same path as many of the 1969 Woodstock, NY goers, I am now nearly 53, sick with the flue nearly every day and just sitting back waiting for my next pancreas and/or gallbladder flare up which will send me to the hospital where patients with out funds are treated by students and like lab rats.
The only things I've learned to understand and forgive in my search for the "how I got HepC" answer and my this trip back in time, is forgiveness to myself for things I've done in the past that were questionable and the fact that my mother was raised in the great depression, she was left with my grandfather and her younger sister when she was ten as they carried her mother to a hospital for 25 years from hearing and seeing things.
2010 the medical field says, is still saying, you can get HepC from A,B,C, D or E. Considering I had cysts removed from my ovaries at 17 years old and the Doc could have had HepC and pricked his finger during surgery putting his infected blood in me, you-tell-me.
October 2004 is when I was tested for HepC. While dating a fellow who needed a blood transfusion after an auto accident in the 1970's and contracted HepC through the blood the hospital put through his veins, his Doctor suggested I be tested for HepC. The suggestion for testing was not advised due to the mere 2% risk of contracting HepC through sex, but from the fact that 1/3 of the world is running around with HepC and do not know it. I believe they aren't aware of it NOT because it doesn't manifest itself but because the medical field HAS NOT cautioned the public to be aware of and pay attention to the very obvious signs/illness brought out by HepC i.e. abdominal pain, fatigue, monthly and possibly daily flue like sickness' and the break down of organs located around the liver due to the liver not functioning properly from HepC, to name a few, and last but not least the mental anguish and dysfunction many of us allow ourselves to go through carrying the burden of knowing we have a virus which can be transmitted to others and knowing there is no cure, we will die from HepC destroying our other organs and/or liver.
My HepC story? The aforementioned is my HepC story.
walk in peace
brenda in the appalacia's of Virginia
tsalagi
tsadanadogi alisgisgi
Being raised a teenager in the late 1960's and early 1970's by a totally dysfunctional step-father and mother who were either always in Europe with my step-sister or telling me to go to my room or outside, put my young mind in motion to the acceptance of always being alone, never having attention from the woman who's womb I climbed out of and building my self-confidence, standards and morals on actions I thought, at that time, to be good. At 16 years old my parents took me to court and had me emancipated because they got tired of me running away from home and not knowing how to live a family life. Sleeping in gas station bathrooms, the woods and under bridge over-passes did not assist my growth as a young woman, so yes, I grabbed a hold of what ever lifestyle and whom ever would put a roof over my head and food in my mouth and at the least, pretend they cared about me. After many surgeries which lead to a full hysterectomy, a few tasteful tattoos and walking down the same path as many of the 1969 Woodstock, NY goers, I am now nearly 53, sick with the flue nearly every day and just sitting back waiting for my next pancreas and/or gallbladder flare up which will send me to the hospital where patients with out funds are treated by students and like lab rats.
The only things I've learned to understand and forgive in my search for the "how I got HepC" answer and my this trip back in time, is forgiveness to myself for things I've done in the past that were questionable and the fact that my mother was raised in the great depression, she was left with my grandfather and her younger sister when she was ten as they carried her mother to a hospital for 25 years from hearing and seeing things.
2010 the medical field says, is still saying, you can get HepC from A,B,C, D or E. Considering I had cysts removed from my ovaries at 17 years old and the Doc could have had HepC and pricked his finger during surgery putting his infected blood in me, you-tell-me.
October 2004 is when I was tested for HepC. While dating a fellow who needed a blood transfusion after an auto accident in the 1970's and contracted HepC through the blood the hospital put through his veins, his Doctor suggested I be tested for HepC. The suggestion for testing was not advised due to the mere 2% risk of contracting HepC through sex, but from the fact that 1/3 of the world is running around with HepC and do not know it. I believe they aren't aware of it NOT because it doesn't manifest itself but because the medical field HAS NOT cautioned the public to be aware of and pay attention to the very obvious signs/illness brought out by HepC i.e. abdominal pain, fatigue, monthly and possibly daily flue like sickness' and the break down of organs located around the liver due to the liver not functioning properly from HepC, to name a few, and last but not least the mental anguish and dysfunction many of us allow ourselves to go through carrying the burden of knowing we have a virus which can be transmitted to others and knowing there is no cure, we will die from HepC destroying our other organs and/or liver.
My HepC story? The aforementioned is my HepC story.
walk in peace
brenda in the appalacia's of Virginia
tsalagi
tsadanadogi alisgisgi
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