LIVING WITH HEPATITIS C

Me in the woods by Lake Superior, c. 1987

Many people have asked me what it's like to live with hepatitis C. For the first several decades, it's fine. In fact, most people don't even know they have it. I got it in 1969 but didn't find out until around 1992. That's when the virus was isolated. Before that, I was told I had non-A, non-B hepatitis. I had hepatitis B in 1969. It cleared by itself. My gastroenterologist, Dr. Coleman Smith from Minnesota Gastroenterology, said that C can ride in on the B.

Symptoms usually come when the liver starts getting bad. These include fatigue, muscle and joint pain, sometimes nausea, pain in the upper right quadrant of the abdominal area, and often depression from living with a chronic illness and chronic pain.

Once cirrhosis sets in to the point of liver decompensation, there's a host of other effects. Hepatitis C is a systemic disease. Upon autopsy, the virus has been found in all parts of the body, including the brain. When cirrhosis reaches a certain stage, you get such things as encephalopathy, esophageal varices, portal vein compression, ascites, etc. Soon it's time to consider a liver transplant. If you're lucky enough to get a new liver before death occurs. There just aren't enough livers to go around. Even now when they can do live donor transplants. That's when they remove part of a living donor's liver and transplant it into the patient. Both livers grow back to full size within a couple of weeks. Amazing!

Here's some comments made by people in my online support group as well as other people living with hepatitis C. Some of these people are on the grueling treatment; others tried the treatment and were nonresponders.

Okay, so I took the shot of interferon and made it all night with no problems. I'm starting the 2 ribavirin this am & 2 in the evening. I just wanted to post as I'm getting started, & getting ready to kick some Dragon's butt!!!! Thanks for the support, everyone!!  --Amy

The side effects of pegaylated interferon and ribavirin cannot be overstated. I was on antidepressants and sleeping meds almost right away and still I was a danger to myself and others. Imagine being a junkie running a fever and in constant withdrawal. That was my experience. I am qualified to equate the two.  --Dave

I could not have made it through treatment without my kitty. She always has a purr for me. Even when this ole hepatitis wears me out.  --  Phyllis

I am lucky enough to married to an angel. She put up with my mood swings, being sick for 48 weeks and inappropriate anger. Without her love and support I never would have made it. If I had achieved a sustained response then it all would have been worth it, but rebounding two months after stopping treatment was like a kick in the stomach.  --Mike

I know that I simply wouldn’t have survived if i hadn’t worked through treatment, i know my own emotional self well, and I knew that staying at home and simply living with the side effects would have not been an option. I did however negotiate a different position at work, i was a counsellor at the time and knew i was too overwhelmed to be a responsible counsellor, so I chose to take a more admin type role for a year. Like Georgia I was newly divorced and alone, I also had two young kids and a menagerie of cats...giving up wasn’t an option. I found the brain fog of the ribavirin the most frustrating thing to deal with, and spent some time getting my milk thistle dose just right so that it did not exacerbate the sides but did reduce the fog.  --Feyona

On my third trip to see my PA, (haven't even seen my doc yet) after the biopsy, she tells me the numbers and says we will order the Peginterferon and get you on your 1st shot in 3-4 weeks. Now remember, I still have not seen my doctor...So I'm quite anxious, and I tell her I want to discuss this with my doctor...she replies "well he is going to tell you the same thing." I can feel my blood starting to boil.....I told her that here I am, with a virus that can possibly kill me and you don't want to get my doctor in here for further discussion???? She replies, "well we are all going to die, and your doctor is not in today"!!!! I swear I blew a gasket....after the chair I was sitting on bounced off the wall,(it was on casters and when I lept to my feet it took off) I demanded to see ANY doctor in the house. After about 15 minutes, another doc came in and did spend about 20 minutes with me explaining things more in depth. And, some say NOT to slam these so called professionals???? My yankee ass I won't!  --Robert

I saw a Dr once as I needed a shot of cortisol because of severe pain that did not respond to anything. He was a jerk and they sent in some other nurse who didn't even know why I was there. I said "This isn't working for me" and got up to leave. He then grabbed me and pshed me against the table and said would you like the shot standing up or leaning over? I was too shocked to do anything and he continued to give me a shot into my upper spinal area. Luckily he was a sports injury specialist and didn't cripple me or anything. He worked at the clinic with my regular doctor. It took weeks to see my regular Doc and I was trying to fly out to a funeral or I wouldn't have considered this guy. I told my doctor I had tried to run out of the room with Dr-----, but I think he found too much humor in the situation. I have not done treatment. I had a very stressful job and my liver was good and I was the worst case scenario for clearing. I'm afraid with all I've been through (major surgery nightmare, move etc) that my disease is now progressing. I've had two liver biopsies and I don't want to do that to my liver again. Is there a new test that is fairly reliable? My enzymes are fairly low riders (as always) but my viral count has gone off the scale. I got hep-c when I was 17 and I'm 61 now. Also, has anyone found an antidepressant that they feel is best.? (If I get fat I will be depressed over that). It's always been on the table between my psychiatrist and myself: Is it depression or hep C? I came to him in the beginning not knowing why I had NO energy to care about anything and not being able to sleep. The antidepressants we tried did help, but they always had problems too. Never a real Go. I am just feeling worse lately. My medical support is pretty much back where I moved from, but there are good people here. I have a Dr who is hooked into all the specialists at the university. They got me a conference with a psychiatrist from up in Taos. He had grey hair in a ponytail and thought I WAS depressed, but suggested an old MAO inhibitor. I don't think so!! I want to get back to doing my artwork, but I just don't have any energy. My system is too sensitive to drink coffee or I would. At home they gave me some adderal, but it made me nervous and hungry and I threw it away. Now I wish I had it, I'd try again. In New Mexico they are neurotic about giving out medication. Must have a really rotten DEA and a lot of actual problems being a border state. Arizona probably has stricter immigration laws. You can get a drivers license here w/o ID I believe. How dumb is that?! The only thing dumber is not to give you a biopsy in the UK. I just read that in a post. How do you know what state your liver is in? It seems like one initial biopsy is so very important.  -- Norah

I'd love to know who went through either the old mono Interferon therapy or the Peg with Ribovarin, had zero side effects, and had no ill-health afterwards. I personally haven't taken it, but I have good friends who have. Some cleared, some didn't, some had few or no side-effects, some had so many they had to come off to save their lives, but there seems to be a constant theme of what the treatment does to you. It is accepted that those who have chemo for cancer have long-standing, often life-long illness caused by the chemo. Combo treatment for hepatitis C is harsher than cancer chemo, and combo is chemo. In fact there is talk in the UK of giving cancer survivors an allowance for heating because the chemo leaves them far more vulnerable to cold. The decision to treat or not is only that of the sufferer, and there should be no exaggeration of either good or bad effects of treatment to persuade somebody. That should be decided on knowledge, what is learned, good and bad, and logically weighed up by the individual and according to their circumstances. When doing my research I learned that statistics for HCV and life expectancy were this:  25% cleared naturally, most in the acute stage, but 2% cleared naturally in the chronic phase. 25% led a normal life and died of unrelated illness (old age one could say) before they developed cirrhosis. These statistics were, I believe, from the pre-treatment era. These days all statistics appear to be from those who have at least attempted combo. I assume that there are some out there who cleared, had no sides, and no long-lasting effects of treatment. They are, I assume, the ones who got on with their lives and never, ever, made any contact with groups like this afterwards. So I guess it all depends what your priorities are, and maybe how good the statistics say your chance of clearing is. Young, healthy, female, white, little or no liver damage, low viral load, genotype 2 preferably, no autoimmune diseases, a good immune system, they all seem to be pointers to success. As research continues so we learn who is most likely to benefit and who is unlikely to. One of the best pointers seems to be if you are a fast responder (super-responder) and clear in the first 4 weeks. I hope I am not vilified for saying this, which I am only saying as a balance to the "treatment is all and wonderful" group. I do not want to put anyone off treatment, only persuade them to do as much research as possible and not be swayed by anyone, including doctors. Doctors aren't always experts. Mine thought that a positive antibody test alone was enough for a firm diagnosis, and he was a hepatologist. When I told him that you can't diagnose from antibody tests with normal LFT he said I knew more than him if I knew that! So finally I'd say, not only get as much information as possible, but make sure you have a doctor who knows more than you do. BTW nobody can understand why I had 2 positive antibody tests, no sign of virus (learned after having viral load and genotype tests for treatment) and 2 negative antibody tests. The theories vary from "I must have cleared naturally," "the virus is hidden by a rare blood group" to "I can't have ever had it and am very lucky, but also the only one the organization that said that had heard of. Maybe that's because others don't interpret normal liver panels as a sign of cirrhosis? But whatever, I had almost a year of believing I had the virus and it would kill me. Now, I wouldn't have any more tests, if I do have it I'd wait as being over 60 treatment would have a low chance of success and a high chance of increasing my arthritis at least, if not, nothing to worry about. After all, the majority with it don't know so don't have the stigma attached. Me, I just have healthy attitude and try to take care of myself.  --Anna

I understood my doctor was in the top three and I've had two of them. Dr. William Lee at UT Southwestern Medical School here in Dallas and Jeff at Baylor. When he moved to Missouri I met with his replacement, a female Doctor that spent all her time working with lab rats. She told me I had no hope and asked why Jeff was even treating me since I was considered a 100% risk. Before I could answer, that he had given me hope by allowing me to fight, she stated that she was sending me back to work and stopping my treatment. Looking back I'm surprised I didn't jump off the table and scream in her fat face. I said excuse me? She said I'm stopping your treatment and sending you back to work. I asked her by whose authority she would do such a thing in as much as it is/was my life, my health, my disease, my treatment, my decisions and my consequences.... This all sounds very polite and well considered but I am grossly paraphrasing and barely remember it. It probably really started out with something more like, "WTF did I just hear you say?" I afford my respect by default to everyone but I'm like Robert in that respect, they work for me. Just two weeks ago I got a piece of a doctor's ass but asked his staff to leave the room first. I had already made plenty of noise at the front desk about him being late...Told them I was going to canel my appointment in five minutes if I were not seen and I was going to reschedule with a Doctor that values my time as much as his own. I further stated that I had already stayed over an hour longer than I generally do only because I was enjoying a conversation with some older gentlemen in the waiting room. Now before anyone gets their panties in a wad about mean old dave picking on some hapless do-gooder that's fifteen minutes late. My appontment was for 1:45pm and I saw him at 3:15pm. That's completely unacceptable and I told him, his staff and everyone in the lobby and suggested that if he was running that far behind with me, maybe they should consider how much time they have to waste. I must admit I then watched in some amusement as they began to go to the desk one by one asking how much longer it was going to be. He explained that he was in "emergency surgery" (that's what they always say and sometimes they're probably telling the truth) I said I will accept that, but in the future if he was going to be late for an appointment with me to have his staff call and at least afford me the opportunity to re-schedule or chose to wait.  --Hal

I remember how frightened I was in 1999 when I was diagnosed. I found this place, poured out my heart and "the research girls" gave me so much good solid information I knew this was a place to call home. I dont have HepB and HepC anymore. I have other issues related to being a guinea pig early on. But I'll never forget the many kindnesses shown to me by perfect strangers. We've all made and lost friends both off the list and on, but considering the thousands of people that have wandered by and the hundreds that have stayed you're probably safer being a qualified member of this list than you are driving on a freeway. You might feel like crap but at least you won't be white-knuckling it :)  Kindest regards and welcome.  --Dave 

So there you have it. A small inkling of what it's like to have hepatitis C and/or cirrhosis and what the treatment is like. For further information, Google hepatitis C treatment, hepatitis C, and cirrhosis.

Life goes on until it doesn't. Thanks for reading.