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
Monday, March 29, 2010
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
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