Friday, April 30, 2010

An Interview with Hope and Dennis

Hepatitis C: Living Through Treatment Together

As a couple, Hope and Dennis have shared many years together. In 2002, their relationship was put to the test when they were both diagnosed with hepatitis C. Together they learned about the disease and together they went through treatment. I met Hope through the hepatitis forums, which can be great sources of support for people living with hepatitis. In this interview we conducted through email, they share their experiences with the ups and downs of living with hepatitis C. As you'll see, Hope has some strong feelings about treatment, but she thinks it's really important for people to know how tough it can be.

When did you begin thinking something was wrong?

We didn't really know anything was wrong with us. About 10 years before finding out we both had hepatitis C, we began taking naps because we got tired halfway through the day. As time went on, the naps got longer and more frequent. I remember feeling depressed and anxious, and having aches and pains. Never did my doctor put it all together, other than comment that I was always sick. Dennis was very tired, but not much else.

When did you know you both had hepatitis C?

Dennis is a disabled Vietnam veteran and has post-traumatic stress syndrome. In 2002, the Department of Veterans Affairs started testing all veterans for hepatitis C virus and Dennis tested positive. Then they tested me. I remember getting a letter from the clinic about my lab result and someone told me on the phone that I had hepatitis C but not to worry about it. She told me hepatitis C was just a virus like a cold and I didn’t need to do anything. I knew very little about hepatitis, other than an old friend had been treated and nearly died. I remember being very shocked and scared because it was same week that Newsweek came out with a front page article about hepatitis C. It seemed that whatever we read said hepatitis was a death sentence.

We both made appointments at the clinic, but we were told we couldn't start treatment for one year because we drank alcohol. We didn't drink excessively, but we had to be sober for a whole year. During the time we were waiting, I started using a computer and visiting websites and forums. Every site I visited pushed treatment or die. By this time, I knew what hepatitis was and was scared to death we were dying. I remember crying a lot and being very depressed because I thought we had to go through treatment or die. It was nerve-wracking.

Did you ever find out how you were infected?

We're not really sure how we contracted it. Dennis continues to take the blame for it because in Nam he sometimes was exposed to blood, and he did use drugs and get tattoos. I have no idea how I got it from him, if I even did. In my life, I've had plenty of surgeries and blood transfusions, but none of that makes any difference.

Tell us about some of your treatment experiences.

We started treatment in February 2003 and it was hell from the first day. We had to call the Pegylated Interferon hotline in the middle of the night because Dennis had fever and chills much like he had with malaria which he had before. Along with that, he had a massive headache and it continued through treatment for the full 48 weeks without any relief. We both had a low-grade temperature the entire year. We spent day in and day out suffering terribly. We live where it's warm, but even through the summer, we were freezing most of the time. We slept with an electric blanket, but the cold just seemed to penetrate our bones.

We both suffered from constipation and diarrhea, and right from day one, we had back pains and joint pains that were terrible and nothing like the flu. The brain fog was like permanent disorientation. We actually got lost when we left the house and had to go out together so we could help one another remember where we were going and how to get back.
I lost most of my hair. It was so thin. Before we started treatment, I had 16 inches cut off and donated it to wigs for kids. By the time I was done, I was nearly bald. It thinned but didn't fall out in patches like it did for friends on chemotherapy.

How did you explain all this to your friends?

I felt it was no big deal to tell our friends. I knew it wasn't easily transmitted so I didn’t keep it a secret that we both had hepatitis C. Big mistake. All the friends we had avoided us like we had the plague. Now the only friends we have are other "heppers." And that goes for most of our family as well. So we are pretty much isolated with no one left in our lives but our daughter, her husband, his parents and the two grandchildren. I used to have the house constantly full of company. We had huge parties, 20 people over for Thanksgiving, open house with 50 or more people coming by on Christmas Eve. No more of that. And honestly, we couldn't do that kind of entertaining anyway because we're way to tired and in too much pain. It did hurt a lot that when we were both too sick to even stand up, none of our friends would help us out. When we finished and they thought the hepatitis was gone, some called but I was angry and didn’t accept them back into our lives.

What were some of the toughest times?

It wasn’t easy getting used to giving one another shots. Then remembering to take pills on schedule got hard to do. We were told they had to be taken exactly 12 hours apart. And add the brain fog along with a zillion other medications, I finally bought a PalmPilot that I programmed to beep when it was time for meds. It beeped around the clock and Dennis swore he would break it with a hammer when we were done.

How was your appetite during treatment?

Dennis was able to drink supplements daily and drink water. I found I couldn't keep anything down, sometimes not even water. Every morning I would eat half of an oatmeal raisin cookie, vomit and then take my medication. If I took the medication first, I would vomit them, too. There were days on end when neither one of us could get out of bed. Our diet was so poor because we couldn't shop much, nothing stayed down when we ate, or if we ate and it did stay down, it wasn’t very nutritious. During the last few months of treatment, I was malnourished and had hyponatremia from drinking only water and not being able to keep food down. I finally forced myself to drink juices and eat pudding.

One of the tough parts of chronic hepatitis is fatigue. Was getting to sleep easy or hard?

I was so weak while treating that I fell a few times and injured myself. For the first 2 months, I was buzzing along, unable to sleep and would just lay there. The VA psychiatrist gave me several different medicines, but none of them worked. I finally went to my local primary physician and got onto Ambien and slept. Eventually we spent so much time napping, half of the time we didn’t know the date or time. I know I was pretty much running on empty and had no clue how we were surviving. Just taking a shower was enough hard work to make me tired enough to lay down and nap.

Did you ever think about quitting treatment?

About two months into treatment, was the first time we really considered quitting. After that, we pretty much discussed quitting daily. Every week we quit and each shot day came around and we would decide to do one more day, one more week. The sad part was as sick as we were, we didn’t really, seriously consider quitting as an real option. Oh, we threatened to quit but would never have done it.

You must have been so excited to finally finish!

As the last couple of weeks came up, we both caught the flu. The real flu. On top of treatment, it was about as rotten as anyone could possibly feel. Neither one of us did the last shot. We were just too sick.

What's your opinion about Riba Rage?

To me, "Riba Rage" is real and the stuff still grabs hold and we start arguing over nothing until I realize it and stop. Day after day we fought like animals. Screaming and yelling at one another over nothing. It was like having an itch you could not scratch. To say we were unhappy is an understatement. We were as miserable as we could be without being dead. At times we were so depressed we had to find reasons to live. Nasty poison to make us think like that.

It sounds like you have strong feelings about treatment.

I know some people need treatment. I just wish I was told about all the bad parts of treatment. As soon as the meds were done, I started to find little things that improved every day. Like my fingertips healing and my yeast infections clearing up. I was on about 60 pills a day and after treatment, I was able to eliminate two-thirds of them! So I recovered a little each day and seriously, for me, I feel like it was 3 years later when I finally felt the treatment was gone, but now I'm left to deal with all the problems it triggered.
If I knew what I do now, I never would have treated. I probably would have just never drank alcohol, kept exercising and eat a healthy diet. As it stands, exercise is almost impossible and all I can manage is a little Tai Chi now. I would never drink again anyway. And I do try to eat healthier. But none of it seems to make a difference. I am plagued with so many pain issues and illnesses and take way too many medications for my liking and feel like treatment ruined my life. Nothing is left of the old me.

So, how are you both now?

I think I've recovered more than Dennis. He has relapsed and it’s pretty obvious he is not well. He has had a FibroSURE test and now has stage 2-3 fibrosis where he had no damage before treatment. Dennis had three root canals during treatment and three more since. After treatment he has lost a few teeth and had gum surgery. The VA dentist told him it was all from treatment. Dennis also has to deal with gout and high ammonia levels. When his ammonia levels are up, he shows signs of dementia, often not knowing where he is or what he is doing.

Tell us about life after treatment for you and Dennis.

Well, it’s a lot of doctor appointments, lab tests, trial and error on medications and lots of waiting room time. Not a week goes by without at least three appointments for one thing or another and sometimes as many as six in one day. Nothing went back to “normal.” Nothing is the same. I don’t even feel like the same person and I find anger to be the predominant emotion I live with. Mostly, I am angry. We were not told of the possibility of 90% of the side effects we had and we weren't warned that treatment could trigger other genetic diseases we might develop later. I hate the deep depression and the anger and rage we live with. The only time we're happy are when the grandbabies are around.

A View into my Looking Glass.......Dottie's Story

Would you like to take a journey down my rabbit hole?

(had picture of Alice in wonderland here)

I imagine that at this time you’re wondering why the ''Alice in Wonderland' reference? Well let me begin by saying that my journey through finding out I had HCV dealing with the fact, treating and the final outcome started as something completely surreal, much like looking through a looking glass into my own life . There I was simply going through life, working, raising a family, bought a house and was doing everything the way that I thought I should. Like so many people in this world I woke one morning and something simply wasn't’ right. Was it symptoms of HCV, no, and that is the part that still to this day still scares the crap out of me. HCV can live and breed, growing and eating at your insides, your organs, chipping away at your life expectancy and you never once know it.

So there I was off to the hospital, my heart racing feeling really scared. Upon arrival at the hospital I was checked in the heart problem corrected for the time being and the array of tests began. A nurse came into my room and asked me “why do you have low blood platelets”? The only thing I could think to tell her was “I don’t know." I had absolutely no idea at the time what a blood platelet was. I was checked into the hospital, tests galore, I had a cardiologist, a hematologist, for the mysterious blood platelets and a gastroenterologist. Not one of these doctors could tell me what was going on. After having a liver scan in nuclear medicine the tech there was talking to me telling me my spleen was enlarged and my liver appeared to be cirrhotic.

I asked him what this would have to do with my heart and he said as far as he knew nothing. A week later I was discharged and told to meet with the gastro doctor in 3 days and the cardiac doc in a week. That there were several tests run and the results would be in soon. The cardiac doctor told me to cut out salt and caffeine and gave me a prescription to regulate my heartbeat; he attributed a lot of it to stress and being a woman. Oh the joys of being a woman....

The gastro doctor told me to quit drinking, DRINKING!!??

I told him I didn't’ drink; you know the occasional margarita a few times a year and a glass of wine here and there. The man looked at me like I was a liar. I didn't’ get it. The hematologist was talking about a bone marrow biopsy. I went home that day, filled with questions, no answers though. I went back to the hospital 2 days later and got copies of my records. As I read through what basically made no sense, there it was HCV positive!!!

My point to all the above,


There are several ways that people can contract HCV, and honestly I could care less how anyone gets it as long as they do everything in their power to get rid of it. Personally, after talking with my doctor, the best explanation that he and I could come up with was that I got HCV from a blood transfusion. I was in a car accident when I was 12 and it was years before blood was tested. ( no old lady jokes ) It is neither here nor there where it comes from like I said, but this is my story so I put this part in.

When I read the news that I had HCV, I did like so many other people do. I thought I had been handed a death sentence. I freaked out!! I cried, I thought my days were numbered and I set out to find exactly what that number was. Would I live days, weeks, months or years?

I decided that the Internet had the answer to these questions. So I clicked on every link I could find and read. In the meantime I saw my doctor and told him I wanted to get rid of this ASAP!!! My med's were ordered and I was waiting for my insurance company to approve them. Why an insurance company had the right to approve or deny my treatment was and is a whole different story that I won’t even begin to get into now. It should be a gimme your sick there are med's here you go. But anyway….

I found my way to a forum that you could post questions to and you could also read other peoples questions and answers. This seemed like a wonderful place to me. People that actually got together to help one another. Let me tell you all, what may appear to be a blessing can be your worst nightmare.

Try to remember that a lot of these people are on treatment and we will get into some of the physical and mental side effects of these med's in a bit. But also remember that many of these people are completely insane and their only reasons for getting to know you are to gather personal information about you and to in one way or another take advantage of you or try to hurt you. All I am saying is BE CAREFUL of what you tell strangers. Their kind words are nothing more than candy in the cyber world and you know what mom told you about taking candy from strangers. Then finally I found my way to Delphi. This place is filled with good information, by all means though be careful here as well, same reasons as above.

OK, so I am at work when my box of med's arrives. My insurance company chose to use a drug supplier that mailed my med's to me, it was actually quite convenient. They came every 3 weeks in an unmarked box simply labeled refrigerate upon arrival. Many people believe that once they begin treatment that they should quit work and crawl into bed, I have to say I find this to be the absolute worst advice that anyone could take. Granted there will be times that you will want to crawl into a hole and die and other times that you just can't make it, take a day or two off, but keep your mind challenged and on other things besides feeling like crap.

In the long run it will keep you sane, or at least close to the level of sanity you started with. My treatment lasted 84 weeks, and I averaged about 2 days off a month. I do not have a job where I am working with dangerous equipment or in a field that peoples lives are in my hands. Had that been the case then my above advice might be a bit different. The job that I do have is managing an office, one of the highest volume insurance agencies in my area. So yes attention to detail was important.

Onto 'The Treatment' WOOOO HOOOO this is fun NOT!!

So the big night arrives, I have my arsenal of things at the ready that I was told I would need. I double checked everything, blankets, heating pad, some Tylenol PM and gave that up quick, a bucket to puke my brains into if the need arose, my shot and my riba. OK I was ready, I popped my pills hopped online and was ready, I admit the shot confused the hell out of me for a while. I had spent some time talking to my new online friends for a while about the “Big” night and I knew they would help me through any questions might have. I was told by numerous people that the first shot was the hardest.

So I was prepared for almost anything, I thought. Knowing that the effects of the shot would take a few hours to reach the worst of what I was about to endure, I decided that Friday nights would be the best time so that I had the weekends to get over the worst of the effects. I mixed the absinthe aka peg-interferon ( I know bad comparison but who ever said I was right in the head ) and poked myself in the thigh. There done, now I was left to wait…..

I sat in chat for a few hours and then the feverish feelings began to set in, they turned to a full body shake and… well…. I thought I was about to meet my maker. But alas, I was just fine. Yes I felt like crap for the next day I ached a bit and wound up in bed for the day. But I knew that was the worst and the rest should be OK. Right? I think not. Like everything else in this world there are good times and bad times.

Treatment was no walk in the park and the longer I was on it the weaker I felt. My blood counts bottomed out. My platelets were almost nonexistent. I wound up not only doing the maximum amount of interferon and riba but got to throw a bunch of yummy other drugs into the mix. Neupogen and Arenesp, Arenesp is basically a long lasting form of Procrit. On more than one occasion my doctor wanted to reduce my interferon due to my blood levels dropping so low. from the beginning my doctor and I had an understanding, I wanted to do this treatment once if at all possible and not waver on the dosages.

I had a personal belief that if my dosages were lowered or I was taken off treatment my system had the chance to build an immunity to the drugs and there was no way that I was going to chance that. Now you have to understand that this is just my belief and there is absolutely no medical research that even hints that I am right. My story my beliefs if you think I am insane you may be right but write your own story….

OK now that you now one of my theories time for another, the protocol for treatment is something like you are suppose to clear at week 12 and then continue treatment for an additional 36 weeks. Well folks, what if you don’t clear at 12 weeks? This bothered me A LOT.

I made an appointment with my doc to discuss this with him. I told him that I felt that no matter what week you cleared at, if you cleared in the first place, that I thought that the additional 36 weeks should begin then. He pretty much dismissed me at this point and said that he was the doctor and would decide what was best for me…. Blah blah blah….. yay you’re the doctor, we were talking about my body not his. So the pcr’s began… my counts were coming down but I was not clear. Not at week 12, 24, 36, but alas at week 48 I cleared. so doctor know it all said do you really want to go an additional 36 weeks from now? My answer to him was a clear and direct YES.

At this time, he now had to apply with my insurance company again for extended treatment. He could show that the med's were working just at a slower pace that optimal. He sent me home with 2 more shots that he had as samples and another bottle of that wonderful riba…. Insurance approved and I was set for my additional 36 weeks.

Be right back I need another cup of tea to finish this……

OK I’m back, hmmm how was I feeling at this point? Like road kill!! Seriously, my hair was dead, I chopped it all off, the only way I could sleep was with the aid of Ambien, the pain in my bones and joints was so bad I was eating Vicodin like candy to function. But dammit I was not going to let this stupid HCV beat me. I had 2 platelet transplants because they dropped as low as 10k and the average number of platelets in a persons body is suppose to be around 250k. the closer I got to the end of my treatment the less and less I wanted to take those friggin shots. I hated them all of them. The neupogen and arenesp burned like hell, made me hurt like you wouldn’t believe.,But I still had my friends on Delphi.

I made chat each and every weekend to laugh and carry on. This was my escape from the pain the misery. I met several wonderful people and several real snakes in the grass.

I can honestly tell you that the group of people that I met and know from this chat room and forum were the absolute best!!! Bette our legendary forum host here has become not just a friend to me but she will forever be family in my heart of hearts. There were nights that I was ready to give in and just simply quit treatment.. I would call her and be all whiney. She would offer me some cheese to go with it and tell me suck it up take your damn shot!!! There were other times I called her weak and just feeling defeated, and she would listen and comfort me. I am truly blessed to have her in my life.
So I guess this about it, I am still clear, 2 years YAY ME!!!!
Time will tell what our fate will bring, but if my story brings you nothing else. Remember its your life, live it!! It is short and make it last as long as you can for never know what wonderful people will enter your life and forever change you. Treatment sux but if it works you have extended your life. I melt inside every time I look into my daughters eyes and know that because I sucked it up and made 2 years of her life a little harder by watching mom fall apart.. I have quite probably added 20 years to our time on this planet. Be well all


Brain fog did clear up........ my story. Joe

In 1999, I noticed that I was getting fatigued quite easily, but chalked it up to my excessive drinking. I made an appt with my PCP around September of that year to make sure nothing was wrong. He noticed that I had never had any test for Hep a, b or c and included that in the test. The Hep C came back positive. He sent me to a specialist to confirm that I had Hep C and it was confirmed.

He also told me that if I don’t do TX I will die. At the time I didn’t know anything about Hep C and figured I’d better do it. However, because of my drinking (alcoholic) he wouldn’t let me do TX until I had stopped for at least 6 months, no way was I going to do that.

Over the next 5 years I became progressively worse with the fatigue and memory problems; I still attributed to my drinking. After drinking for all of my adult life I figured it was catching up to me and decided I had better stop if I could. In April of 2005 is when I had my last drink (very proud of myself for that). After 10 months of not drinking and still having major fatigue problems I decided to do TX and get it over with. I started Feb. 2006 and finished Jan 2007. I was 1a and have been SVR since week 12 of TX.

I was supposed to have flu like symptoms, it was much worse than having the flu. I was on my own with this except for my wife being there for me. I knew nothing about forums or a support system for this. I thought I was going nuts, I was screaming at everyone for no reason.

Once TX was over I could hardly wait to get back to normal and after a couple of months I felt no better. I called the NP up that was monitoring me and told her that. She said it may take up to 6 months before it was out of my system. The 6 month point was no better. I made an appt with her and listed the many things that were not right with me, major fatigue, no short term memory, mental confusion and brain fog, could not stop sleeping etc.

She told me she never heard of such a thing happening to someone after TX. HUH?

I found out about forums for Hep C in August of 2008 and finally started getting the low down on Hep C and TX. I found that I did not have to do TX or die; in fact all my liver functions were great. My ultra sound was normal; they didn’t even have a biopsy done on me. I would have chosen not to do TX had I known that. I would have kept a close eye on my liver and held off to see if they would come up with a real cure.

My 3rd year post TX went by in January and the brain fog did clear up which in itself a great thing. But I still get fatigued easily and require a lot of sleep and naps throughout the day. My short term memory is shot and a 20 minute drive wears me out.

My problems with this disease are the lack of info out there about it. The mis-information being told those that have it is still the same, treat or die. The denial that the symptoms after TX is not related to TX; although I now see that they are admitting to some possibilities of TX causing some problems; has to be labeled as such.

I cannot work as I was an electrician which is a very demanding job, but if I were just selling popcorn I couldn’t do that either. I can’t even do volunteer work because I never know when I’m going to just poop out. I am lucky that I came down with a shoulder injury in 2007 and was able to go out on SSD for that. I know how much of a struggle it is to get SSD from the after math of TX.

I feel like I am 80 years old instead of 59. I was an IV drug user back in the late 60 as many of my friends were. Most of them have Hep c too.

Like I said use what you want or do use anything at all, I’ll let you decide on that.


Joe Walsh
Hepatitis C Survival Guide A-Z - this web site will will be made available through various parts of  blog 
Just incase you need it quickly and there's too many stories inbetween
In my opinion, it's the best site for people on treatment.
It was created by three outstanding women; Trishamn, Lacey & Freyja
Without this guide I don't know how I would have gotten through treatment.  Thank you

We need to get over the stigma....Inspirational Story from Scotland

I don't really know where to start with my story as so many people have went through so much pain and hardship because of having this horrible virus. I feel I have been very fortunate not to have so far. Apart from a few episodes of real joint pains that come and go.

I am a 53 year old mother of three grown up children and have also brought up two step children. I have seven grandchildren and another one due in August. One of my daughters has had problems with alcohol and drugs and has for a number of years; as a mum it breaks your heart to see someone you love wasting their life. She is on the mend now, however, I have two of her three children living with me as both their dads died through drugs within months of each other and my daughter just couldn't cope. She lost herself more in drink and drugs. I have been caring for them for over a year; one is 3 yrs old and the other is 13 years old; it can be difficult at times as I also work full time with young adults with learning difficulties but I love them dearly and we manage.
Through all the troubles and hard times we have been through as a family I have always said "at least we have our health".

In early February this year my youngest daughter phoned me to say that her Dad had been in touch to say he had Hep C and I should be tested. We haven't been together for over 16 years and don't keep in touch only through our daughter. I spoke to my husband about getting myself tested and we decided I should as I would just worry. It would put my mind at rest. Anyway I was really healthy so I wasn't really worried about the results. The nurse I spoke to told me there was no cure but I could be tested which I was.

Three weeks later on the Friday night she called and told me the tests were positive, and I would probably get an appointment to go to the local hospital for a day bed. I made an appointment to see my Doctor. I just couldn't believe it. I was in utter shock the whole weekend.

I have a very dear friend that I have known since school who had been through treatment twice 15 years ago for Hep C and eventually cleared. She was also very active in fighting for the rights of people with this virus as she suffered in the eighties. She won’t mind me naming her. She is called Feyona and she has a wealth of information about this disease, so I knew this nurse was wrong.

I phoned her to tell her my news she was devastated; if it had not been for Feyona my weekend would have been unbearable. I was so frightened and although I had my husband he didn't understand, I felt so alone.

Feyona talked me through what would happen next and even emailed me a letter including questions etc. that I was to send to my local Doctor prior to my appointment on Monday; so that he would know what I wanted to ask him. This she said would save time. She told me to ask for copies of everything. My Doctor told me he knew very little about Hep C but was sending away more bloods to find out if the virus was active. Another time of waiting then he called to say it was and I had a viral load of 34,951, however, my liver function tests were not too bad and he didn't know the geno type yet.

I was advised by my friend not to use the local hospital as the one in Dundee had specialists in this field so I asked to be sent there. A couple of weeks later I attended the new hospital. They did all the tests again and also did a fibro scan the scan showed moderate fibrosis. I was to attend again to have an ultra sound in a couple of week’s time. The day before I was due at the hospital I received a phone call to say they had my blood results back and they showed I had been exposed to the virus but there was no active virus. They said they thought my body had cleared it by itself.

As you can imagine I was over the moon. I still had to attend for the ultra scan because of the fibrosis and they had found high ferritin/Iron which they thought may be hemochromatosis so wanted to look into it; also do my bloods again just to confirm I had no active virus.

I then received a call at work to say they had made a mistake I did have a viral load of 52,000. I just fell to bits. It was like a double whammy; getting my head around it the first time; coming to terms with it and then the relief of not having it, then I did all over again.

I had to come home from work and ended up going to the doctors crying my eyes out.

It just felt so unfair.
I have my original appointment to see the professor and get started on treatment on July 23rd so that's as far as my story goes at the moment.

Only my youngest daughter knows I have this virus I haven't found the strength to tell the rest of my family yet especially not my daughter with the addiction problems. I have told my granddaughter who is 13 and lives with me. She is amazing and keeps me positive by saying Gran this isn't your fault and we can beat this. She has researched it on the Internet and knows all about it don't you just love them eh!
I do realize I am very fortunate to have the National Health Service here as it must be so difficult when you have the added stress of money when you are going through what is a really stressful situation to begin with. My heart breaks for some of the people who are struggling to pay to get treatment.

I feel there is not enough known or addressed about this illness. My friend has fought for 20 years here in Britain to help people deal with all sorts of issues; even she still feels no-one is listening, lets hope this changes soon.

We need to get over the stigma and find the strength to stand up and be counted and listened too.

Keep up the good work Betty Love from Bonny Scotland

Ann xxx