Advertisement
The Body: The Complete HIV/AIDS Resource
Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App
Professionals >> Visit The Body PROThe Body en Espanol
  
  • Email Email
  • Printable Single-Page Print-Friendly
  • Glossary Glossary
  • PDF PDF

Personal Accounts

March 2009

People with direct experience of HIV and hepatitis coinfection, have written much of this guide. Their storie are included here, and cover dealing with a second diagnosis, disclosure, friends, family, sex, treatment, management and support.

Add your story

How other HIV positive-people deal with hepatitis C coinfection is an important source of imformation.

  • If you want to share your story, email us: stories@i-base.org.uk. Include a name you wish to appear with your story (you real name or an invented one)
  • You can tell us about any aspect of coinfection. Some points you may want to cover:

    • Dealing with a second diagnosis
    • Disclosure
    • Effect on friends, family and partners
    • Self-management
    • Hepatitis C treatment
    • Where you get support
    You don't have to tell us about all of this! A short comment on one aspect of HIV/hepatitis C coinfection is just as important.
  • We will post as many personal accounts as possible, but may not be able to post every story.

Personal stories in this guide

Several pages of this guide include personal experiences of people with HIV and hepatitis C coinfection:

Contributors

Carmen

How was dealing with a second diagnosis?

A little strange that ... I was diagnosed HIV-positive in 1989. I only discovered by accident my hepatitis C status after I volunteered for a trial at my HIV clinic which was looking at whether interferon might be useful for people who had run out of ARV options for their HIV. I can't say that it came as a surprise (I assumed I was because of my previous drug use) but never really thought about it as I assumed I would be dead by the time it kicked in.

Now, I am more concerned about the hep C, especially as it is 20 years since I got infected with HIV (I know I picked it up in 1986), and the hep C might have been there even longer.

The statistics are quite frightening now, with mortality high amongst those coinfected and for that length of time.

How has hepatitis C affected your interactions with other people -- disclosure, etc -- including sexual partners?

I've used the hepatitis C to see how people would react, and then, depending on their reaction, I've decided whether to talk about HIV.

I feel it carries a different kind of stigma ... for HIV, it is sex and being a promiscuous/whore, and HCV it is being an injecting drug user -- a thief, not to be trusted! There are different associations in people's minds.

I've not really had the need to discuss to sexual partners as I have been in the same relationship for 20 years -- and I infected him with HIV. Luckily, he did not pick up the HCV (I had stop injecting by then) and we didn't inject. He might have picked it up and cleared it! But, right now, he's still HCV free.

What did you personally decided was safe sex with an HCV-negative partner?

Since diagnosis with HIV we have practised safe sex -- condoms -- primarily because of issues of re-infection (especially as we are both on different combinations). But, as I said before, we had unsafe sex for nearly 3 years and he's not HCV-positive. It seems to me that transmission by that route is not an issue.

I also think that sharing straws is not risky -- as we have always done that and he's not HCV. Maybe if your nose is dripping with fluid ... but in that case you wouldn't be inclined. Sharing injecting equipment is a sure way of transmission.

Treatment and management issues?

After having volunteered for that study -- and had to stop after 2 months because the side effects were horrendous -- I am very reluctant to start treatment.

I recently had a Fibroscan which showed some fibroids so I have had to start thinking about it. Because I have genotype 1, my chances of clearing it (or suppressing it) are very remote.

I am hoping that in a year or so some of the drugs on the pipeline will prove to be more effective. I am excited about that and hope that my liver will hold that long!. I am really not looking forward to starting treatment with what is available at the moment -- but will do if that is what is required. But I am fearful because my quality of life is gonna drop to the floor -- and for a long period.

What about risk of reinfection with hepatitis C?

I've not really thought about that. I am not injecting substances.

Any gender-specific issues?

We need a lot more information and research about transmission of mother to child, and transmission in general.

A friend who is coinfected just recently had a child and had to have a Caesarean section because of the HCV (her viral load was undetectable and CD4 count was high, so she could have delivered normally) but she was not able due to the HCV.

A thing that bothers me is that even in the HIV community there is discrimination about drug users ... assumptions are made by other positive women as regards drug users. Especially if they want to have children. The same with doctors ... and sometimes they don't pass the information on.

Support -- what would you recommend?

Talking to peers -- other people in the same situation -- is the thing that has worked for me. When I go to Barcelona we have long exchanges as most of my friends are coinfected.

But I also think that as coinfected people we might need to have some specific support group, especially as regards treatment issues -- and coping with treatment!

And also, because if we had acquired it through drug use, we wont feel so discriminated and stigmatised.

Account posted: May 2007

Mauro

How was dealing with a second diagnosis?

Very difficult to talk about getting diagnosed with a second infection, because I was diagnosed non-A, non-B hepatitis (term term used before hepatitis C was discovered) at exactly the same time as I was diagnosed HIV-positive ... so of course, at that time the HIV thing was much more important. And also because at that time everybody knew almost nothing about non-A, non-B.

How long ago was that?

It was about 1983 or 84. So the priority was still with the HIV at that time. After HIV treatments became available HCV became a more important issue -- after 1996. Before effective HIV treatment became available, HCV was irrelevant compared to HIV and AIDS

How has hepatitis C affected your interactions with other people -- disclosure, etc -- including sexual partners?

Safe sex is exactly the same as for HIV. It's more an issue to consider small things like toothbrush, or razors. Or in terms of drug use, sharing a straw or other kind of equipment. Sometimes you are used to taking measures against HIV but HCV is a different virus.

But in terms of sexual transmission ... well, actually, I think that looking at the evidence -- there is very little evidence that HCV is transmitted by sex. Actually, most of the evidence is that it is not a risk. It's probably more likely if you are coinfected, or with another HIV-person, but in a sense, the transmission is by two different routes.

What about choosing or delaying treatment?

One of the main obstacles for me is biopsy. I don't feel good about having a liver biopsy. So, right now I am considering treatment because I see a lot of people dying from hep C. For me, it's a long time to have had hep C. My viral load is OK, my liver enzymes are OK, but we know that the only way to know the real situation is to have a liver biopsy. But to be honest, I am ready to start treatment tomorrow -- but I don't want a doctor to put a needle in my liver!

Have you had a Fibroscan?

No, not yet. And I am looking forward to that. I know it's not completely validated. I am waiting for non invasive technology, and ... possibly for some better drugs. Because, the other obstacle is of course, interferon. There are a lot of people who have a lot of trouble, and I have a tendency for depression. I know that you have to take some time off, be very relaxed. And I am working.

It's very difficult to take the decision. And I know there are other drugs in the pipeline ... maybe in a couple of years we can have some more specific and targeted treatment.

What's your genotype?

It's genotype 1.

Are there gender-specific issues?

It's not clear to me, looking at the literature, about the risk of vertical [mother-to-child] transmission for hep C. I think that in principle, monoinfection is not a big issue but with coinfection it is more important. As far as I know, if I was monoinfected, I wouldn't bother that much about hep C. Honestly!

But we need more information and to know more in terms of vertical transmission.

What about disclosure? Has that affected how you talk to partners?

It's difficult for me to say because I live in an environment where people say I am HIV-positive and I have this and I have that ... it's not a big issue.

So, I really don't know about for say the general population ... I suspect is not a big issue in reality. I don't think that if you say hep C they freak out. Because they don't know.

For me, since I disclose HIV, that's more than enough! Whatever else I add is less important! Syphilis ... or whatever ... (laughs)

What have you found important for support?

It's more about information! I think that not everybody is well informed about the difference between HIV and HCV -- specially about transmission of HIV and hep C particularly in terms of drug use ... because it is not only just in terms of sharing needles. HCV is way more infectious than HIV.

So, I know many people who are taking exactly the same measures to prevent transmission but we know that's not enough. The information is not enough. And also in terms of treatment options ... and the differences between genotypes. There is unspecific information about hep C, and so, sometimes, my impression is that people take decisions based on insufficient information, both in terms of prevention and treatment

Account posted: May 2007

Marianna

How long have you been infected with HIV and HCV?

Hello! I am Marianna, from Poland. I am infected for HIV for 5 years and hepatitis C for 6 years.

At the moment you're a current drug user?

I am not. I am on methadone. I am not doing injection.

So, you knew about hepatitis C before? How did you feel when you had HIV?

It was a surprise because I got infected with my first sexual partner, and I've just realised that he did it on purpose. He infected me on purpose! He was manipulating me, and–I feel I was so stupid.

And that was for the hepatitis C?

No ... no ... for the HIV.

A bit of a bastard! Has this affected your interaction with other people?

Strange ... but with my family, my closest people, they are more understanding me now. And they believe more that I will be sober and going something with my life, more than before. The knowledge that I have -- I have only limited time, yes? -- it makes some motivation to do this quicker.

What about disclosure to sexual partners?

Just after I get infected, I get back to my first love and the man I love, and I am still with him (we are 6 years) -- he get infected by me, and, I was feeling very guilty. But now, I understand that he knew he would get infected. We were, at the time, very hard addicts, we had to put injection ... so ... he got injected with my syringe ... so ... It wasn't through sex and love ... but ... just addiction. Simple junkie behaviour.

What would make it safe to have sex?

Hepatitis C? If I only had hepatitis C I would not use a condom. For what I know and what I think -- from my experience -- hepatitis C is not transmitted by sex. So, it doesn't have to be safe sex. Yes ... ???? Unless you have blood (menstruating)???. Apart from this exception, it is only relating to HIV that, for me, you have to use a condom.

Is your partner both HIV-positive and HCV-positive?

Yes.

What's your approach to HIV treatment?

HIV treatment ... My point of view on that case is like this: when you're feeling sick enough to be on the medication, you have to do it. But till then, don't listen to the doctors. Don't listen to anyone, only to your friends who are also on this medication. Only they can tell you the truth.

You're not on HIV medication. Have you ever considered going on hepatitis C medication?

Yes, I was. But I think I am very badly informed. Because, information now, is like, interferon -- this kind of treatment -- it's very like, commercial. The pharmaceutical firms are selling this medication to the government, and the government is selling this kind of treatment to infected people. So, if you have hep C you have to go to interferon, which in Poland is very expensive. Everywhere, very expensive. In Poland, the government is paying some part and some part you have to pay.

And what I have heard, it can have side effects that affects the brain and how you feel. I heard about families (because the treatment takes about a year), where the husband or wife will say: I hate you. The person on treatment -- and there partner -- can get so depressed, and in such a mental state -- the wife was leaving, the mother was leaving the children, wife was leaving husband etc -- because people on interferon are so unbearable -- So, it affects the brain, for what I've heard, and other stuff in your body also. And it's not worth it. And it's only in a statistical way, you'll get any better. There's no guarantee you'll get rid of the HCV virus, or even get better. You could get worse -- and your life can be ruined.

Do you know what genotype you have?

No.

Have you ever had a biopsy?

No. It was never offered to me. The blood test they are doing is normal. I don't have yellow eyes or skin. So, now, it's not necessary to give it.

Do you ever get worried about been reinfected?

I've never thought about it. I think it will be with me for the rest of my life.

What about support?

No ... not from medical profession -- really just from friends. Just a few weeks ago -- when I heard is not going through sex and I believe it because (someone who's not infected by HIV) he has a child now and his wife is negative -- so, I know he wouldn't have done it if he was not sure he was not going to infect his child and his wife. He's a wise man ... so I believe it.

Account posted: May 2007

Silvia

How was dealing with a second diagnosis?

Actually, I was diagnosed with hep C before I was diagnosed with HIV! So, my second diagnosis was HIV ... (laughs)

But I must say, when I was diagnosed with HIV and I asked about hep C, they told me "Well, just don't bother because you're gonna die of HIV anyway."So, I put the hep C completely in the back of my mind ... until a few years later, when ARV were working quite successfully and my doctor start to think "well, since you are probably living longer than you first expected -- you need to deal with your hep C."

So, I first went to see a liver specialist ... and I think that for me, that was almost like the day I was diagnosed with hep C, again! It was quite hard, epecially as I couldn't see a coinfection doctor. I had to go to another hospital, another doctor ... and be asked quite a lot of disturbing personal questions, like how I got hep C -- because I got hep C as a teenager, through drug use. And the doctor became very moral and said things like "How could you have been using drugs, at 16 yrs old?"And I replied "Can we just please talk about the present?"

So, that was very hard, and I remember been in tears!

How has hepatitis C affected your interactions with other people -- disclosure, etc -- including sexual partners?

Well, I think HIV has taken the centre stage. After disclosing HIV status, hep C seems ... (laughs) very little.

What did you personally decide was safe sex?

Well, I use the same precautions as for HIV. I don't feel I have to take extra precautions, sexually.

If I was on coke, or drugs, you know ... sharing equipment it is important, but I am not using drugs anymore.

What influenced your choice to delay treatment?

Well ... on one side, I've been lucky enough to have a pretty asymptomatic hep C. My liver -- after a liver biopsy and a Fibroscan -- looks in a pretty good shape.

So, even if the doctor's is saying "Yes, it would be better to treat." I feel that my quality of life is too good to compromise. With treatment -- I am not sure I need it yet -- and I am not really sure it is going to be successful.

It is difficult to consider taking a treatment that, in the long term, maybe it's going to help me but it's going to make me very sick in the present. So, I think that I am more focussed on waiting for new treatments to come out which are less toxic.

What about the risk of reinfection with hepatitis C?

I don't think I run any risk because I practice safer sex, and I don't use drugs anymore.

Any specific gender-related issues?

Well ... I am just a bit concerned that most of the trials done in coinfection have a very low enrollment of women. Because ... usually ... in the APRICOT study there were only 19% of women enrolled. So I am always looking for more information ... and concerned there are not enough women in studies to really pick up if there are any gender differences.

Support: What would you recommend?

For me, it was useful to have a coinfection specialist -- because I think it is enough to have to deal with the HIV clinic. Get used to one doctor who knows about both HIV and HCV ... and it is quite specific!

For me it was very important to have the HIV and HCV treated together. They are related, their progression is related. A liver specialist is not fully prepared to deal with somebody that lives with the double stigma of having these diseases ... and didn't really understand some of the social and psychological implications.

And then, of course, having the experience of sharing with other people who have the same kind of health problems -- it helped me to make informed decisions, it helped me to know where the information was available. They helped me understand things that were not easily understandable -- because there's quite a bit of jargon ...

Peer support, by people who are coinfected, and the coinfection clinic, are CRUCIAL.

Account posted: May 2007

Dean

When were you diagnosed and how to you feel about treatment?

I was diagnosed with HCV in May 2008 and began treatment in November. I knew that I would opt for immediate treatment. The thought of waiting or the chance of better treatment to come along would have meant years of worry and uncertainty, not to mention the restraints on my social life and guilt everytime I enjoyed a drink or a party with friends.

I was told of the possible side effects and decided that having survived PCP pneumonia and 12 years combination therapy that I could put up with a few more side effects for a year, because at the end of this treatment lies the potential of a magic word "CURE".

To think that I could possibly defeat this infection was a great incentive. After 1 month of treatment my blood test was hep C negative.

Two things horrified me about treatment: self-injecting and side effects.

I am squeemish and I thought I would never manage to do this myself. I asked to see the needles and when I saw how tiny they are I was reassured but still frightened. I asked the nurse do the first three and when it came to doing it myself I was thrilled to find that I could. It was painless and over in a flash.

This made me so proud that I almost wanted to do it twice!

The flu-like side effects were strong for the first three weeks. After this they became more like a tense headache that I could manage with painkillers and an early night. I did develop aenemia which has been difficult and made me very weak and dizzy. All through this time I fixed my mind on getting to the end of the year and know that I could beat this infection even if I cant beat the HIV.

Im currently in month four of treatment. The aenemia is better and I'm still hepC negative. I can't wait to get to month 12 and use the C word -- CURE.

Account posted: March 2009

Previous | Next
Table of Contents




  
  • Email Email
  • Printable Single-Page Print-Friendly
  • Glossary Glossary
  • PDF PDF

This article was provided by HIV i-Base. It is a part of the publication Hepatitis C for People Living With HIV. Visit HIV i-Base's website to find out more about their activities, publications and services.
 

Tools
 

Advertisement