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.

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