Monday, March 29, 2010

The Silent Killer: Hepatitis & Your Liver (YouTube)

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

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.