This Month in HIV: Update on Hepatitis C/HIV Coinfection
Welcome to This Month in HIV. I'm Terri Wilder. This month's topic is HIV and hepatitis C coinfection. Up to one third of people with HIV are estimated to also have hepatitis C, and living with both viruses is no picnic. The good news is that, unlike HIV, hepatitis C can be cured. The not-so-good news is that being cured is sometimes far from easy.
This podcast will focus on three people. I'll be talking to Tracy Swan, the Coinfection Project Director for the HIV activist organization Treatment Action Group. Tracy just finished cowriting a booklet about HIV/hepatitis C coinfection, and she will update us on the latest hepatitis C news and research.
But first, I'll speak with Greg Lamb and Dan Durbin, an HIV-positive couple who have been together for 10 years. Dan was diagnosed with HIV in 1998, while Greg has been living with HIV for 23 years. In 1993 he also discovered he had hepatitis C. Dan and Greg discuss how they've dealt with hepatitis C as a couple, from diagnosis to treatment to everyday support. Welcome Greg and Dan!
Greg: Thank you, Terri. Thanks for having us on and hopefully the information will help somebody out.
Dan: Yes, thank you Terri. I'm glad to be here and talking with you.
Great. Let me start with Greg. Greg, can you just tell our readers and our listeners about your personal history with HIV? Specifically, how did you find out that you were living with HIV?
Greg: In 1984, I had broken my back. During the hospital visit there, they tested and found that I was also HIV positive. It seemed surreal at the time with the other things that were going on. However, it grew to be something a little different than that.
Greg, where were you when you were diagnosed? What state?
Greg: I was in Portland, Ore.
Did you go to a Health Department? Or was it a hospital?
Greg: No. It was a hospital. The doctors there, while they were just doing the general blood workup, decided to do a test, and bingo! There it was.
Dan, you were diagnosed in 1998 with HIV. Can you talk to us a little bit about that experience?
Dan: Sure. In 1997, I was living in Key West at the time. That August I had had a test and tested negative. So, anyway, I had a severe back problem arise, like, Nov. 19 of 1997, and left Florida to come up to live with my sister to get help with it. March of '98, when I went to the doctor, then I was HIV positive.
So, where were you when the doctor told you that you were HIV positive?
Dan: Actually, I was living in Farmington, Minn., which is near Minneapolis.
Greg, you are also living with hepatitis C, and you were diagnosed with that in 1993. Can you tell us a little bit about that experience?
Greg: That came as kind of a shock. I'm not quite sure [what you mean when you say] experience. You mean, how did I get through it?
How did you learn that you had hepatitis C?
Greg: I had come in contact with somebody that I had found out had hepatitis C, so I decided, just as a precaution, to go and get checked out. The first time I went, the tests were negative. Then, as a precaution on a regular blood work, approximately six months later I got one, and that's when they found it.
When you say you had contact with someone, this was a sexual partner of yours?
Okay. And so, just to clarify, if I wasn't clear in the beginning, Greg and Dan are partners and they live together in Minneapolis. The reason why we have Greg and Dan together is, we thought it would be neat to share their experience as a couple living with HIV, and also the issues that may come up when one partner is coinfected with hepatitis C.
Greg, talk to me a little bit about after you got your diagnosis of hepatitis C. What happened after you got your diagnosis? What did the physician or the nurses tell you would be the next step, as far as dealing with the hepatitis C?
Greg: Well, I didn't get a great deal of help right off the bat. They told me to, of course, change my diet and any alcohol, stop any alcohol intake, change my lifestyle, try and get to bed early -- all of the normal things that keep a person healthy, they wanted me to do. But they didn't really have any treatments that they were going to put me on until two years ago. And living with hepatitis C, the one thing that stands out most of all is just the fatigue, unbelievable fatigue from it.
Greg, when you say living with the fatigue, is the fatigue from the actual hepatitis C, or is it from the treatment that you have been taking?
Greg: Both of them, recently. However, I had a treatment about a year and a half ago. They started a treatment on me, interferon [generic name: peginterferon alfa-2a; brand name: Pegasys] treatment. Prior to that, I would live with fatigue daily. I would have periods of a couple of hours where I felt good, but then I would have periods of several hours where I felt very overworked, overstressed, mood swings, tired, cranky ... the whole nine yards.
Greg, you said that one of the things that they talked to you about was changing your diet. Can you be a little bit more specific? What specifically did you do?
Greg: My diet consisted of eating one meal a day. They wanted me to change to eating three meals a day. At the time, I just really didn't pay much attention to my health, in general. They were very helpful in getting me nutrition, making sure that my nutrition levels were up, making sure that I ate three times a day -- that was a big one -- just, start taking better care of myself, overall. I had, prior to that, been consuming quite a bit of alcohol. I had to make some very serious changes on that very quickly. I had to knock that off.
So, Greg. Tell me about starting the treatment for hepatitis C. Talk me through that process of you deciding to start the treatment. Then, if you can talk to us about your experience taking the treatment. Particularly, we're interested in hearing about any side effects that you may have had.
Greg: Well, thank goodness, I had a wonderful doctor from Hennepin County Medical. She had been with me through the whole thing, prior to and post treatment. [Dr.] Kay Schwebke told me exactly what to expect. We spent an entire visit together. She outlined what to expect, what injections I would have to do at home, what the downsides were, and what the possible hopeful outcomes were.
It took me about two weeks to mull it over, and then, I had been going through such a hard time of fatigue and irritability that I figured that anything would be better than what I was going through.
I decided to go ahead and do it. It meant injections at home. It meant frequent doctor visits. And I was in bed most of the time. I would say I was probably in bed much more than I was out of bed.
I was vomiting, feeling very sick most of the time. As I said, having to give myself shots; that was no fun. And being monitored. This went on for about eight months, until they found that the treatment wasn't working as well as they would hope it would, so they took me off of it. Then it took me about another six months to get over the treatment, to get back to where I felt like a human being again.
Are there any special things that you figured out to do to help kind of alleviate some of those side effects that you were feeling during the times you were taking treatment?
Greg: Well, my partner, I've got to say, is just a gem. He was able to stay with me and calm me down during the rough times, and take care of most of the things that needed taking care of so I could sleep. Sleeping seemed to be the big thing that kept me going. Thank gosh that I didn't have a lot of responsibilities outside the home in any way to deal with. Stress was just something I could not handle.
Dan, talk to me about some of the things that you did to help Greg through that period when he was taking the treatment.
Dan: Okay. Well, let's see. Sometimes, with the mood swings, I had to quickly remind him that he was having a mood swing. It would get better. Other things were just making sure that he had plenty of fluids, and had good food to eat, and a wide variety of food ... whether he could keep it down or not. It was kind of tough finding things that he would be able to eat because of his nausea.
What were some of the foods that you found he was more tolerable of?
Dan: Generally, less spicy. If you could stick with traditional American food and pastas, things like that. Something easy on the stomach.
Then you also mentioned drinking water. Why was water important?
Dan: Well, I think water is important for anybody, just to keep their body flushed of things that shouldn't be there. But I drink a lot of water myself, and so I have a tendency to push it on somebody else, too.
Greg: If I may interject there: I was sweating a lot when I was in bed, sleeping. I was going through tremendous sweats. So keeping myself hydrated was real important.
Did you find that drinking a lot of water would help with your fatigue, Greg?
Greg: Yes, I did, as a matter of fact. It was sure a lot easier for them to get blood draws when I was hydrated than when I wasn't.
Greg, you mentioned that you stopped the treatment, and then it took you about six months to feel kind of back to normal, if you will. Talk to me now about what your focus is on your hepatitis C now, since you're not taking the treatment. How are you making sure that you're staying as healthy as possible?
Greg: Well, I do exercise a couple of times a week. I do things like garden around the house -- the normal things that people would do -- as well as, I take vitamins, especially calcium and a super B complex, along with Centrum. I make sure that I eat three meals a day. Dan is a wonderful cook, so that's a real easy thing to do. I try to keep my diet light in the way of pastas and rices, as opposed to beef roasts and more of your heavy foods. I eat more of the white meats and fish.
I know that exercise has helped my fatigue level quite a bit. And keeping a regimen going of that, just even simple exercising. I don't stiffen up. My willingness to want to do something is better. My ability to do something is better. And I can squeeze more in in a day.
Talk to me about the health of your liver right now. You said that the treatment for hepatitis C didn't really work for you. Are you still monitoring your liver? Or what kind of medical interventions are being done?
Greg: Well, according to the way I understand it, the treatment that I went on, because it didn't work, none of the other treatments would be helpful, especially with the side effects that are involved. Some of the side effects are pretty devastating. However, there are a lot of new things coming down the pipe that are coming up in the next couple of years that I know that Dr. Schwebke is quite excited about that show great promise, where the other, older forms of treatment didn't. And so we're waiting till about 2010 to try it again.
Is she monitoring your liver? Does she still do liver biopsies? How does she monitor your liver?
Greg: With blood work.
Oh, with blood work. And what does the blood work tell you?
Greg: Whether or not my liver is stabilized, if it's getting worse or if it's getting better. Right now, it's stabilized. It hasn't gotten any worse for the experience, thank goodness. Overall, it was a nasty experience to go through. The treatment is not something that I would recommend to anybody lightly. If I didn't have Dan, I think I would have gone crazy a couple of times. It's very, very hard on people connected with the person, as well as the person themselves. However, I pulled out of it fine. I feel just fine now.
Dr. Schwebke is giving you the inclination that it's possible that you could be fine without any kind of other treatment?
Greg: Well, that I didn't do any harm by having the treatment.
Dan: If I may interject here, Terri.
Dan: That is that the doctor, when she first put him on the treatments, on a scale of 1 to 4 -- 4 being the worst -- he was at level 3, she said, as far as the condition of his liver. Even all through the treatment and everything, apparently, that didn't really change. So he's still hanging at about a 3. It's not cirrhosis, okay? It's the step before that ... if that helps any.
Dan, has she ever talked about if it does go to a higher level? Would you be talking about Greg going back on treatment? Or would we be talking about the possibility of a liver transplant?
Dan: Well, that she hasn't really said anything about. But it was kind of left up in the air. If his liver started getting worse again, we would attack that when it happened.
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This article was provided by TheBody. It is a part of the publication This Month in HIV.
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