This Month in HIV: Update on Hepatitis C/HIV Coinfection
The other question I have is specifically for Greg. Have you ever had a liver biopsy done?
Greg: Yes. I have.
Can you talk to me about what that was like? What actually happens? How did it feel? And what kind of information did it give you?
Greg: It's really nothing. Nothing to it. I went in. They did a slight sedation ... not sedation. What's the word I'm thinking of? They anesthetized the area locally and took a gadget, a spring-loaded gadget, and zip, zip. They pressed it up against me. They made a small incision, went in with a little TV camera to make sure they were in the right spot. And then they put the mechanism, the spring-loaded mechanism in there, and snip. And that was all there was to it. I was out the same day. No pain. No problem. I was a little sore. I had to watch my lifting for a couple of days.
Greg, what exactly did the liver biopsy tell you?
Greg: Dan, could you help me out with that?
Dan: As I remember, that's where we got the indication that you were one stage below cirrhosis.
So it kind of lets the patient know, kind of, what damage, if any damage, there had been.
Greg. You mentioned earlier that one of the recommendations was to avoid alcohol. Do you drink at all, or do you completely not have alcohol?
Greg: I drink very, very seldom now, and only on social occasions. I used to drink a great deal. But I do know that my side, and my liver, will hurt if I drink. And during the treatment I did not drink at all. But even if I have a beer now, I notice I can feel it in that area. So it kind of warns me that I need to keep alcohol at bay.
You had mentioned to me in another conversation that you had had hepatitis A and B, at one point?
Can you talk to me a little bit about that? When you were diagnosed and ...?
Greg: Well, I worked for a hospital, and I was in charge of burning all of the isolation trash. I was contaminated a couple of times from the needle sticks and pricks, and had received both hepatitis A and B within a two-year period. I didn't even realize I had it until I had gone in for an annual physical and the doctor checked me over and said I looked jaundiced and did a test and boom, there it was.
Gosh. That was back in the early '70s, I would think.
What year was that?
Greg: I think it was 1978. Maybe later '70s, '78.
What happened after the doctor tested you?
Greg: For hepatitis A, nothing. Because I worked for a hospital I had to take time off till it had gone through my system. Like I said, I didn't realize I even had it. With hepatitis B, I turned jaundiced for about three weeks. I really did not feel miserable at all -- at least, in comparison to the hepatitis C. Hepatitis C has caused me to ... it's very different than A and B. It's caused me to have weeks of fatigue, and months and months and months of depression, feeling like I have the flu all the time. So I would say, having A and B was just a breeze, in comparison.
Let me ask you about hepatitis B, Greg. Did your body just naturally clear that? Or did you ever take any medicine for that?
Greg: No. I didn't take anything for it. And the body naturally just cleared it out.
You mentioned that with hepatitis C, you've experienced depression. Talk to me about that. What did that feel like? And did your doctor maybe put you on an antidepressant, or maybe recommend that you go see a therapist?
Greg: I went to see a therapist and she recommended that I go to a psychiatrist to get medication because I was at the onset of depression. But I was put on medication for it. It affected every facet of my life, from desire for sexual attraction to socializing, to willingness and wanting to do anything, wanting to hide from people, canceling appointments, staying in bed all the time. Even though I felt like getting up, [I was] still staying in bed all the time because I didn't want to face the world. It was very difficult.
What medication did they put you on for your depression?
Greg: Celexa [generic name: citalopram].
Are you still on that medication now?
Greg: Yes, I am.
So, even though you're off the treatment, you still feel better taking the antidepressant?
Greg: Yes, I do. I have to say, after I got off the treatment, I went through a period of depression again -- even on the Celexa. The period lasted about three months, and I think a lot of it might have been situational, with the weather change and season change, and that kind of thing. But I do know that I was really scared there for a while, that I was going to go into an even deeper depression. But I did pull out of it, and I am much better.
Greg, did you ever feel suicidal?
Greg: Very much so.
Dan, can you talk to me about that time when Greg was very depressed? How that felt for you to watch your partner get that depressed? What are some things you did to try to comfort him to get through that period?
Dan: Well, I found it really kind of heart wrenching to see him go through that. When I was much younger, I went through a depressionary period, and I completely understand what he was going through. I felt that, whether he liked it or not, I kind of needed to get a little closer to him, and tried to throw in some laughter to help change the situation a little bit, at least for a couple of minutes. Just basically to help him improve his outlook. I would remind him that this is just temporary. It will pass. And don't give up yet.
Dan, tell me about some of the things that you saw that happened when Greg was depressed? Describe to me some of the things that he did or said that you knew were due to the depression?
Greg: I was actually suicidal.
Dan: Yes. Greg was actually suicidal. He'd talk to me about it and of course I would convince him otherwise. Let's see. I could notice by how critical he might be of everything around him. He became much more vocal. That was kind of a sign for me, also. Then just noticing other than [because of the] fatigue, him laying in bed a lot, spending a lot of time down, even though he may not have needed it.
Dan, did you feel like the depression affected his appetite?
Dan: It might have. But I think the biggest thing that affected his appetite was the nausea that accompanied the hep C treatments.
It would be hard to tease out: Is it depression, or is it just feeling so nauseated? Or maybe a combination of both?
Dan: Right. Right. A combination of both.
Greg: Terri, I'm going to add to what Dan said, there. There were periods when I just wanted ... I wanted the world to go away. Actually, I wanted what I was feeling to go away. Not as far as wanting to end my life. I just wanted the way I was feeling to go away. I will say that Dan was brilliant, in that every time I felt that way, he would always manage to get just a little bit closer to me and he wouldn't go away, even if I wanted him to. He would still find a way to stay with me, and to hold me, and to care for me. Just having his hand on my knee, or sitting in the same room, reading a book -- just to let me know that he was there. I've got to say that that was the biggest help anybody could have done.
I'm noticing that we are about to run out of time, and I wanted to take a minute to ask each of you, separately, to talk about any suggestions or advice that you could give to someone who's living with HIV and hepatitis C coinfection. So, Dan, I want to start with you first. Maybe take this opportunity to give advice to other partners who are helping their partner go through the hepatitis C treatment, just give some tips on how to help their partner get through that treatment process.
Dan: Okay. Well, that's a tough one.
Greg: Laughter helps.
Dan: Yes. Well, first and foremost, for example, people need to realize that no matter what life is like, it's still worth it. That's kind of like number one that I would tell them. The other is, don't give up hope. There's always a chance that it could be reversed -- the situation, or the virus. And the other thing is, don't shut out the rest of the world, and don't let the rest of the world shut you out. And I'll leave it at that.
Greg, I want you to talk from the perspective of a person who has gone through the hepatitis C treatment. Any advice that you can give to someone who is actually considering going through treatment?
Greg: Make a lot of apologies to people and friends ahead of time, about not being able to keep appointments. One of the great distracting things about it was that I would make an appointment to, for example, do an interview like we're doing on a certain time and a certain day. That day, I would feel terrible and would be unable to keep the appointment. The same would go for socializing ... almost everything. So, just make a lot of apologies to people for both your mood and your absence for the next year or so.
Maybe another way of putting it is to ask the people in your personal life to be flexible with you.
Greg: Yes, yes. It's to have the people in your personal life be as flexible as possible.
Let me ask you one more question, both of you. Are there any resources that you guys can recommend for people, whether it be a book or a Web site, that helped you get information about hepatitis and HIV coinfection, and maybe how to deal with that? Or is there a support group that you may be able to refer someone to?
Greg: I would say that the AIDS Project, here in Minnesota, is probably the greatest resource to go through. One of the biggest problems that anybody would be facing that I know of is the mountain and maze of paperwork, trying to get on social services. The local AIDS organizations -- I'm familiar with Oregon and Minnesota -- I highly recommend them. They did a wonderful job in providing information on where to go, who to see, what to do, and social outlets with other people that are infected in one way, or have a disability in one way or another.
Greg, are you saying that they helped you with paperwork? Was that to cover the treatment financially?
Greg: Well, to connect myself with everything that I would have been eligible for in both health care and any other support from local, state, government offices, as well as have one focal point for other people to get information about me, to do studies. Like the University of Minnesota does several studies on people that are coinfected and have HIV. They put me in contact -- both Dan and I in contact -- with them, and that was a wonderful experience. They are a great resource for people. If you're having a problem with housing, if you're having a problem with the government, if you're having a problem with even medical or life situations, I found them to be a very, very good resource to go through.
Let me ask you two closing questions. You were in a clinical trial for coinfected people, Greg?
Greg: It was for HIV. Both Dan and I were in separate clinical trials. I'm part of one that is a three-year trial where they actually take a biopsy of a lymph node, and see how much damage HIV has done to it over the years.
Is the clinical trial looking at your coinfection, or is it just looking at the HIV?
Greg: Just at the HIV.
My final question is: I know that the hepatitis C treatment can be rather costly. How was your hepatitis C treatment paid for?
Greg: By the government.
When you say that, do you mean Medicaid?
Okay. Because that is a question that I have asked several people when I've been talking with them about coinfection. How are they having this treatment paid for? And either people have private insurance or Medicaid. But some of the states that I have contacted have their ADAP [AIDS Drug Assistance Program] program as paying for it, or they are in the process of advocating to have their ADAP program eventually cover that hepatitis C treatment. When I talked to Dr. Schwebke the other day she said that at this time, Minnesota's ADAP did not cover hepatitis C treatment, but that they were looking towards talking with legislators about having that added.
Dan: If I may interject, Terri. Greg used to be on disability with Social Security, complete disability. He had gotten off disability to help me with my situation. In the process, they offered him something called a 1619(b), which is a special program that will allow him to work and they will keep up the medical part of it, because he would not work if he didn't have the medical part of it. Do you understand what I mean?
So it sounds like it's an incentive for him.
Greg: Right. I can hold down a job, a full-time job, and Medicare would still pay for all of my medical.
Greg: Medicaid, for all of my medical.
Dan, what did you say the name of the program was?
Dan: It's called the 1619(b). That's at the federal level. Now, it's also connected with the state level, which is called the MA-EPD [Medical Assistance for Employed People with Disabilities] program, which allows him to continue the Medicaid. It's kind of odd. I'm on MA-EPD, myself. It's kind of an odd situation. With his 1619(b) status, it's a little bit different from mine. But he is covered as long as he's working. But if he can't work because he can't get the medical, then he would have to go back on disability.
Greg: Getting paid for disability.
Right. Greg, your work is to be a personal care attendant to Dan. Is that correct?
Greg: That's correct.
So that helps.
Greg: That was a little rough, during that hepatitis C treatment. That was a little rough.
I would imagine that it would have been a little bit of a role reversal.
Greg: Well ...
Dan: It was a dual struggle.
Greg: It was a dual struggle, yes. We made it through, but it was a dual struggle.
Well, I want to thank you both for taking the time to talk with us today. I look forward to talking to you both in the future to see what comes about with any hepatitis C treatments that are coming down the pipe, and seeing if Greg, you'll be eligible for that.
Greg: 2010; that's what Dr. Schwebke has said.
Okay. Well, we'll give you a call in about three years and see how you guys are doing. So, again, I want to thank you for your time and your input into this very important issue.
Dan: Well, you're very welcome, Terri.
Greg: You're very, very welcome. Bye-bye.
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