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Nine new stories about experiences

of Hep C treatment so that you can

stop worrying about all the myths and

half-truths and get some treatment

for your self

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Free to download at www.saolproject.ie

Copyright SAOL Project 2019

Please acknowledge SAOL Project when using any of this material.

Our continued thanks to our Funders who make this work possible: HSE, DSP,

CDETB, Probation, NICDATF

Corrections or further information admin@saolproject.ie

This publication is a gathering of stories from people who have experienced Hepatitis

C in their lives. It is not meant to be a textbook on Hepatitis C.

We have tried to ensure that all information is accurate at the time of publication.

We advise all people with Hepatitis C to discuss their particular case with their GP

and a Liver Clinic.

Any opinions expressed in the stories do not necessarily represent the opinions of

the SAOL Project or its Board of Management or any of our funding agencies.

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In the search for truth, the investigation that an ethical

memoirist undertakes—examining both verifiable facts

as well as potentially distorted memories and

assumptions based on perspective—may often yield

better results than an examination of the record alone.

By better I mean both truer and more credible. In

addition to revealing a person behind the facts

reported—and thus the possibility for connection—the

focus on transparency and framing leads to questions

of the self-reflective kind.

‘The Essential Role of Storytelling in the Search for Truth’, Lise Saffran

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SAOL is project that works with women who have addiction issues. We are based in the

North Inner City of Dublin. We offer an integrated programme of education,

rehabilitation, advocacy and childcare. SAOL has worked over the last 24 years to promote

the needs of female drug users and their children. We have tried to highlight the many

extra difficulties that face women who use drugs including the stigma, lack of appropriate

facilities and programmes as well as difficulties with access to appropriate programmes.

We also have specific supports for people with Hepatitis C; we encourage everybody with

Hepatitis C to seek treatment and we are happy to help and guide you with such an

endeavour.

For more details, www.saolproject.ie and hepc@saolproject.ie

Thanks to:

All the people who gave of their time and privacy to tell us their stories. We are so

fortunate to have to you linked to our project. The tradition of storytelling is

almost as ancient as Ireland itself; it is instilled within the soul of our country. We

might seem to depend on paper and emails and social media to share our stories

but in truth, it’s our seanachaí that we need the most - the story teller who passes

on essential truths to help us all on our journey. To our group of seanchaidhthe,

thank you very much.

To Jennifer for gathering the stories

To the Hep C team here and in City Clinic and Chrysalis for all your amazing work

in the aim of wiping out this disease.

To the people and organisations that fund our work – especially NICDATF, HSE,

DEASP, Pobal, Probation and CDETB; thanks also the universities and colleges

around Ireland (and beyond) that send us your brilliant students to enhance our

work.

To the participants, peers, volunteers, staff and Board of SAOL for your dedication

to the cause.

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Contents:

What is Hepatitis C? 5

Story 1 by Ann 6

Story 2 by Trish 11

Story 3 by Kim 15

Story 4 by Pamela 19

Story 5 by Tara 23

Story 6 by Eugene 29

Story 7 by Laura 34

Story 8 by Sabrina 37

Story 9 by Mark 41

Please acknowledge the author and SAOL Project if you use any part of these

stories.

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What is Hepatitis C?

Hepatitis C is an infection of the liver caused by a virus called Hepatitis C . Only

about 1 in 5 clear the virus when they first get it; most people, 4 out of 5 develop a

life-long infection that, over time and if left untreated can cause serious health

problems like liver disease, liver failure and liver cancer.

How do you get Hepatitis C?

When blood from someone who is already infected gets into your body, you are likely

to be infected. Sharing drug equipment (not just relating to injecting; sharing snorting

equipment also spreads tiny amounts of unseen blood) spreads Hepatitis C. Sexual

transmission is possible but is rare. If you have HIV, have multiple partners or a

partner who has Hepatitis C will increase the risk. You can also get Hepatitis C when

getting tattoos or body piercing done, but only if non-sterile equipment is used. A

small number of babies also become infected from their

What are the Symptoms of Hepatitis C?

Symptoms: rarely any at the start. You might have a fever or feel tired or lose your

appetite. Symptoms with long-term Hepatitis C can take years and years to develop.

When they do emerge, it’s often a sign that you have advanced liver disease.

What is Hep C Stories 2?

Hep C Stories 2 is a collection of 9 stories about people who have had to be

tested for Hep C and their stories of what happened next. Nearly all the stories

are from people who have undertaken the new treatment and they tend to

agree on one thing – do the treatment! It’s easier and more effective than the

old treatment. Don’t believe the street stories; move past the fear and change

your life.

We are very grateful to all those who told their stories to Jennifer; we hope we

have been faithful to you in transferring them from recordings to paper.

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By Ann

I caught Hepatitis C when I was 21. It was the night

of me 21st birthday. I think I was diagnosed the same

year. How I found out was that my doctor took blood

from me and the results came back positive for Hep

C. To be honest I wasn’t surprised really. It was

2001.

I remember very vividly how I contracted the virus; as I said it was the night of

me 21st birthday and we were at to having a great night. We all went back to

me friend’s house for a party. At the time I was strung out on heroin, but I only

usually smoked it (I had tried using a needle a few times prior to this night). We

had bought gear to bring back to the gaff and I asked me friend had she any

new barrels, but she didn’t. I think I knew she had Hepatitis C, but I was

thinking I was lucky that’s all I caught. I ended up using with a fella at the party

with a works that my friend had used previously. That’s the only way I think I

could have got it. I was so careless and reckless that night, I could have caught

HIV. As it was me birthday and I was already out of it by the time I went back

to the gaff; I was out of me head on coke and ecstasy at the time.

When I was in active addiction I would have accessed a needle exchange quite

regularly. Me partner would have went a lot to get the packages, the brown

bags. It was usually Merchant’s Quay but there was an odd day you could get

them out of one of the clinics. I never really used after anyone other than me

partner at the time. He had Hepatitis C when I met him so when I think of it

now, I could have been giving myself different strains. He was so stupid, we

lived out of town so there was no really exchanges so one day he seen a spike

on the ground and he was gonna pick it up and use it. I was like how fuckin

stupid can you be!

I found out I had Hep C off me GP. I can’t really remember what she took

bloods for; I think I may have asked her, I can’t really remember as it was that

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long ago. I don’t think she knew much about it herself. She didn’t offer me any

treatment options or anything like that. I don’t even think she had any leaflets;

sure I didn’t know much about it myself, I just thought it didn’t kill you. At the

time H.I.V was really like scary, like there weren’t the medications they have

today. I don’t know why but I wasn’t that scared of having Hep C.

Before I came to the Saol project I was never offered nor had I discussed

treatment for Hep C with anyone. Actually a couple of years ago, maybe 8

years ago I was in James’ Hospital and I went for an appointment with a doctor

and he told me that I wasn’t suitable for treatment at the

time that there were numerous amounts of people who

would need to be offered treatment before me. So I

never went back. So it wasn’t until last year when I heard

of the new treatments that I decided to put myself

forward for it. I had heard horror stories about the old

treatment. My ex ended up in a psychiatric unit after it. So when I heard about

the new treatments I decided to see if I could be put on them.

I linked in with the Hep C support in Saol where the caseworker went through

the treatments and side effects and all that and filled out a referral form to the

Mater for me. I was really excited about it, having seen it on the telly it really

did seem like a wonder drug. I thought that if I ever got the chance to get the

treatment it would be years down the line; I couldn’t believe how quick I got

offered it.

I started treatment in 2018 in the Mater hospital, Clinic 6. I have to say

everyone was so helpful and kind to me. It was a real nurse-led care. For most

of the appointments it was just with the nurse Jeremy. He was so helpful. He

always explained everything to me. When attending appointments I always

had the support of me Hep C support worker with me. That was a great service

in that they would remind me of appointments and all that. Sometimes I’m

quite slack and would have been late for appointments; I found that having the

support of someone encouraged me to get there on time.

The team in the hospital are brilliant. Everything is said to you exactly how it

is; there was none of that medical talk, which I thought it would have been, it

was so laid back.

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It was explained to me that I would have to stop taking extra vitamins that I

was taking; I think this was just in case it collided with the meds. I was told to

make sure I took it every day and was given advice on what to do if I missed it

or I got sick or anything like that. I was given a list of any possible side effects.

For me the treatment was just one pill a day for 12 weeks. I was given the

numbers of both the nurse and the pharmacy and told to ring in case there

were any problems at all. I couldn’t have asked for any more support;

everyone was brilliant.

I couldn’t believe how quick the appointment date came for me to start the

treatment. It felt like me referral was only gone in and I had an appointment

for me first bloods. I really thought it was going to be months and months

down the line before I started the treatment. I felt a little bit nervous but I

think I was more excited than anything. I was excited to know that I was being

given the chance to have that gone out of my body. I know there are so many

people in so many countries that aren’t given that chance; some people die

from it, so I count myself lucky.

I was prescribed a 12 week course of a treatment called Epclusa.

It was given to me through the pharmacy in the hospital. I had to go back

every 4 weeks to get bloods taken and to collect my next bottle of pills. I didn’t

need a medical card to avail of this treatment, all I needed to have was a PPS

number.

My experience on treatment was really positive. For the first week or two I

was a bit tired on the treatment and for the last couple of weeks I noticed my

hair to be shedding a lot more than usual. During the treatment there were a

couple of days where I got very tired.

My experience is a little bit different as I am living in homeless accommodation

so I don’t have the luxury of resting when I needed to. I have to be out from

morning to evening which can be a little bit difficult if you’re not feeling great.

The nurse in the hospital was very accommodating when I explained this to

him. He gave me a letter to give to the staff to tell them about my treatment

and some of the possible side effects. I have to say they weren’t always helpful

in regard to my situation. Depending on the staff member on, on any

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particular day, it got to the stage where I didn’t even ask for bed rest, I just

used to keep myself busy. I spent many a day walking around the shopping

centre in Blanch. This was actually a great help because when I did get to go to

my room I was exhausted and slept.

There was one or two nights were I suffered from broken sleep but I wouldn’t

even class it as a side effect. Also whilst I was going through the treatment I

came down a bit off me methadone and other street drugs. This could account

for some of the symptoms I was feeling like a bit of anxiety near the end. I also

suffer from PMS so this could account for some symptoms.

One thing that I do notice since finishing the treatment was that my eyes were

a bit sensitive to light. It wasn’t something that really bothered me, but I did

notice that when I woke up in the morning my eyes were streaming a bit.

Another thing I’m noticing is better since being off treatment is that my

concentration levels have improved. I’m finding me hair is still not great since

finishing treatment. I find it comes out a lot more than before treatment. I’m

back taking me vitamins so hopefully this will help. I think I managed the

symptoms and side effects really well; I think that the fact that I knew that, for

example, the tiredness was a common side effect made it easier to manage. I

knew it would come to an end and at the end of it I would have a healthy liver.

I was expecting a lot more intense symptoms, but no, they were grand, they

were very manageable.

If I was having a bad day I had a lot of supports from SAOL. I wonder where

other people who are not involved in Saol get their support from. I feel that

everyone should have a support system whilst going through treatment as I

found it really helpful.

I’m now finished me treatment nearly 11 weeks and I feel great. About a week

or two after finishing treatment I started to feel much more energetic. I was

waking up with much more energy. I was delighted that I got through the

treatment, the biggest concern I had was me hair. But I’m finding that now me

memory is much clearer. I’m remembering appointments and things like that.

Another thing I’m noticing is that me skin is great; I’m getting less spots and

stuff like that. I’m also finding that me mood is much better, I feel like I’m

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coming back to meself. Since finishing the treatment I’m on a new anti-

depressant and I’m finding this is helping me PMS and that.

To get through the 12 weeks basically what I did was took it as it was. I just

fought through it. The fact that I knew that I had a good support system made

the journey much easier. If I was to advise anyone on the treatment I would

say don’t be nervous. It’s nothing like the old treatments. It’s over before you

know it and the side effects are very, very minimal. Just take every day as it

comes and drink plenty of water. I would recommend the treatment to

anyone.

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By Trish

I found out I was Hep C positive in and around 1999. I know exactly when I

caught it; it was the first time I ever used. I was living in Ballymun and me

friend’s older sister was a sex worker and I was dying sick and she offered me a

skin pop. At the time I didn’t know anything about Hepatitis. I was only on the

gear about 6 months. I let her give me a skin pop and I knew she had Hepatitis

and I know that’s how I caught it as the works wasn’t clean or anything. At first

I was only smoking the heroin but after that experience I started skin popping.

Once I was using intravenously continuously I always attended the needle

exchange, but in hindsight it was too late anyway.

Apart from that first time, in regards to sharing using equipment and

paraphernalia, I would have always only used my own works; the only things I

would have shared would have been spoons and filters. We didn’t know

anything about spoons back then; so apart from the spoons and the filters

everything else would be spotless.

I got me blood tests in me methadone clinic when I was 19 (in Castle St). They

just said, “You have Hepatitis but you’ll be alright”. That was it. They said you

can see a counsellor if you want. I didn’t see the counsellor. They weren’t

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pushing the counselling on me; they said you have Hepatitis but sure nearly

everyone has it, it will be ok. I was on my own during this. I didn’t really

understand the whole diagnosis. It was just one of them things. Yeah, I’m on

gear, I have Hepatitis, it’s not gonna kill me; it’s not the virus (HIV).

For a month or 2 after diagnosis I was fine but then after a while I broke down,

I was out in me Ma’s and I broke down. I was devastated when it sank in; I was

on my own, given this diagnosis with no other information. I never wanted to

tell people about my Hep C diagnosis, because I feared they would treat me

different. I was always aware or self-conscious of things like blood, whenever I

was in me Ma’s or family members’ houses and say I cut myself I was always

panicking; people who didn’t know would be like ‘What’s she panicking

about?’ I always had a fear about people touching me blood. There was always

something niggling in the back of me head, ‘You have Hepatitis UR fucked’.

From that initial diagnosis I was 20 years waiting to be put on treatment. I first

attended James about 10 years ago where I was given a biopsy and told me

Hepatitis was dormant. I know they don’t say that anymore but that’s what

they told me then. They said I was alright that I was to come back in a year, but

I never went back. I had a bad experience with the biopsy; I didn’t like it and

plus the fact that I was attending the appointments on me own.

It was another 10yr until I got meself refereed to the Mater Hospital Clinic 6

through my job. The Hep C caseworker sent in a referral and I was about 6

months waiting for an appointment. I was quite anxious during this period and

eager to start on the meds. I had a number of different symptoms that I was

experiencing, with fatigue being a major one. I was also suffering with pains in

me shoulders. I eventually got me appointment in clinic 6 where I met with a

doctor who went through me history, I got bloods taken and also had a

Fibroscan done. The results of my Fibroscan were really positive; my score was

6.3 which is quite low. I thought after living with Hepatitis for 20 yr the results

would be much worse.

I was started on an 8 week course of a treatment called Harvoni. This was a

once a day pill. For the first 5 weeks of my treatment I had very little side

effects, I couldn’t believe that I was sailing through this treatment. But for the

last few weeks of the treatment I experienced bad headaches and also poor

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sleep. The constant headaches left me feeling a bit down in meself. I can’t

explain it but I just hadn’t got the energy to do anything. I was constantly tired,

like I had never been in me life but yet still couldn’t sleep. This left me feeling

moody. When the headaches were really bad my tolerance and patience were

really low, so I was a bit moodier than usual and not really in the humour of

talking to people. At one stage I was contemplating going to the doctor for

antidepressants thinking I was depressed but I wasn’t - it was just tiredness.

To manage the side effects and the headaches I was advised to take

paracetamol and to uptake my intake of water; I also found that going for a

walk helped. I didn’t always find the paracetamol worked but found that the

water and getting a bit of fresh air helped lessen them (headaches).

Other things that I found helpful throughout the treatment were the support I

received through my job, through the Hep C worker and also the Hep C

support group that I attended. My family were really supportive; they helped

out with childcare when I needed some time out. I feel like that if it was a few

years ago that I started this treatment, I wouldn’t have had the same support

and I probably wouldn’t have finished the treatment or started it to be honest.

I found my support through the Saol Project; they have Hepatitis C workers

who can refer you for treatment to either Clinic 6 in the Mater or the Liver

Clinic in Eccles St. The support worker attends hospital appointments with you

if you want them to, which I found to be a good source of support. Also I found

the Hep C Support group really beneficial. It was open to people who were

either starting treatment or just finished treatment, it gave me an opportunity

to talk to other people who were going through the same or similar experience

to me.

I’m finished my treatment now a week and a half and I have to say it felt great

to finish the treatment. I’m still awaiting my post 3 months blood to give me

the all clear but I know my viral load had dropped so low that my Hepatitis is

gone. This is a big weight off my shoulders. I feel great in me self since

completing the treatment, me memory me sleep and me mood are all better. I

am at the moment breaking out in hives but I don’t know if this has anything to

do with the treatment. In relation to the headaches, they are much better,

even though for the last 2 weeks I felt like a poker was going through me head.

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How I coped and managed my treatment was just getting on with things and

getting meself out. Kept meself busy and kept me structure going in me life.

Also mixing and socialising with people even on the days I didn’t want to.

I was talking to me friend on Saturday. He is due to start treatment this

Thursday and my best advice to him was to drink loads of water and eat

healthy. The treatment is well worth taking. I know I was complaining of

headaches etc. but it is definitely worth doing. I lived with this virus for 20 yr

and now after 8 short weeks my viral load is 0. Now don’t get me wrong, I

would never put me self in the situation where I would have to do the

treatment again but still I would recommend the treatment to everyone.

Image when finished is positive, but the headaches are what sticks with me.

It’s kinda like when u have a baby you have pain, but when the baby comes

you forget about the pain; well it’s kinda the same I had headaches but now I

don’t have Hep C.

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By Kim

I know exactly how I got Hep C. I don’t remember the year I got it but I know

exactly how I got it. At the time I was using coke and there was me and

another person sharing, but it was my coke so I was getting the most. We had

two works, mine and theirs, but it was my coke so there was more in my

works. But what happened was that they picked up mine and used it because I

wanted that coke. I convinced myself that much that it was mine. I knew this

person had Hepatitis but the urge for the coke was so strong that I still

convinced myself that it was mine and I used it. Normally I didn’t share

anything with anyone, down to spoons, everything I always used my own. The

clinic used to give me new works. I was very particular with my stuff; I used to

burn the side of me works so I knew it was mine. But it was just that one time

and I knew what I was doing, but I wanted it. I had been using coke all day and

this was the last bit of the day and I wanted it. I convinced myself that it was

mine even though I knew it wasn’t. I said it was only this once, nothing will

happen, I never did it before and I was never going to do it again.

I ended up going for a test in City Clinic; I think the doctor actually asked me

did I want to be tested. He sent me down to the nurse where the test was

done there and then which was great as it didn’t really give me time to change

me mind or talk meself out of it. I had put testing off for months because I was

worried as I didn’t really know what this person I had used after really had.

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When the bloods came back I was told that the test came back negative for HIV

but positive for Hepatitis C, so I was kinda just happy with that, that it wasn’t

anything else. I don’t recall ever being told anything about treatment In reality

there was no information given to me. I was given me results and that was it.

There was no counselling offered after it, there was nothing, I mean nothing.

You got your results and that was it, off you go.

I didn’t even think about treatment or anything until I was offered through my

workplace the option to be referred for treatment for my Hep C by the Hep C

support worker. For ages I was hearing on the streets about this new

treatment but you never think that you’re going to be offered it, you just don’t

think it’s going to be offered to you. It’s like other people get offered it but not

you, like someone who’s clean or who has been for years, but you don’t think

that your gonna be offered it. But I was very happy when I was. I was referred

to the Mater for treatment. I got me bloods done and was told to come back

in a months’ time to get the results. When I went back I met with Jeremy the

nurse who explained everything to me. The way he explained it, it sounded

easy enough. Hepatitis treatment has a bad reputation, from people who

were on it before the treatment sounded rough. To me this new treatment

sounded like you were going through a course of strong antibiotics. I was told I

was gonna be on this treatment for 12 weeks, I would have to come back to

the hospital every 4 weeks for bloods. I was able to discuss my treatment plan

with both Jeremy the nurse, the pharmacist in the hospital and also Jennifer

my case worker. I was given a little chart to help me remember to take my

medication every day. I was on one pill a day for 12 weeks. The name of the

treatment I was on was Epclusa. Every time I went back for appointments I had

the support of my caseworker. She attended all my appointments with me. I

found this really helpful as we had discussions each time about what would

happen next and discussed side effects etc. I found Jeremy great; he explained

everything in layman terms, not in big words that I couldn’t understand.

Jeremy explained to me the name of the treatment I would be on, how long it

would be for and also the success rate. I feel it was explained to me really well.

The first day I went to the hospital they took my bloods, I was dreading this as I

have a thing about needles, but I have to say the nurse was great. She got

bloods straight away, there was no jabbing about, she was in and out straight

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away. Needles are a trigger for me, but this time it wasn’t as

she was in and out. That would have been one of the fears I

would have had, I have a thing with needles, but a trick I

learned was just not to look.

I wasn’t long waiting on treatment at all, but the waiting period was a bit

anxious for me, as you never really know what is gonna come back when

you’re waiting for bloods to come back.

When I first started the treatment I was taking it in the morning,

but it was making me really tired all day; me arse print was in

the sofa I was sitting on it that much. So I switched it up and

started taking it at night which really made a big difference to

me, it actually helped with my sleep which meant I was awake during the day

because it was knocking me out.

I did get a few headaches at the beginning and did feel tired but when I

changed to the night time I was ok. In relation to hair loss I didn’t feel like I lost

hair but what I did notice was that there was more hair in the hairbrush when I

brushed it. Headaches, poor sleep, fatigue and light-headedness was some of

the side effects I experienced whilst on the treatment, but nothing was severe.

In relation to the headaches I’d say they were 6 out of 10 at a bad day. The not

being able to sleep was horrible, but that eased when I changed when I took

the meds at night. I managed the headaches with water; I found the headaches

eased quicker when I drank more water than when taking a painkiller. I could

have been dehydrated as I don’t drink a lot of water generally. When I think

about it I was thirsty a lot.

The support during treatment was brilliant, I had the support of my job, my

Hep C support worker and also the hospital were brilliant.

At the moment I’m just nearly finished my treatment; I have about 3 tablets

left to take. I should have been finished last week but due to missing a couple

of days here and there I just am continuing taking them until I have none left.

The difference I feel in meself since starting treatment; I’m not as tired as I

used to be, I don’t need as much sleep and I feel more alert in meself. I’m

looking forward to being completely finished to see if there is any other

differences I see in meself. If I was to advise anyone on the treatment I would

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tell them to find a time of day that suits them to take their pills. I don’t think

the treatment was that severe. The only thing that really affected my daily life

was the tiredness other than that it didn’t affect it. Another tip I would give to

anyone due to start is the importance of water. It’s 12 weeks out of your life

and it flies by.

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By Pamela

I only tested positive for Hep C last year. I can’t be really sure how I caught it

but if I’m honest I think it would have been from the time I was on the snow

blow. This was a bad period of my life; I was homeless and living on the streets

and injecting snow blow which I was buying from the hemp shops. At the time

there was a group of us 6 or 7 that all used together, we were all in and about

the same age and had come through the care system together. We shared

literally everything! When I was diagnosed with Hep C, my initial thought was

lucky I don’t also have H.I.V as I had been openly sharing with a friend of mine

who was H.I.V positive. This friend of mine used to get me and on many

occasions we shared a works. I feel blessed that I didn’t contract anything else.

The only reason I ended up getting tested was that my doctor who also

prescribes my methadone told everyone that he was not dispensing until

people were tested. He had been asking people to be tested for months and

no one was getting it done so he ended up putting us all on DNDs (this is a “do

not dispense” until we got bloods done).

When my results came back, I remember the doctor and the nurse who works

out of the Thompson Centre calling me into a room and telling me that I had

the Hepatitis C virus, I was given a leaflet and that was that. I remember

coming into work quite upset as I didn’t know what to do or where to go from

here. I met with one of the keyworkers who informed me that we had a new

Hepatitis Case worker starting in the job, so she linked me in with her.

We did a few one to ones where we talked about things like coming to terms

with the diagnosis, discussing your results with family and other things like

dealing with shame and stigma. Initially my Hep C caseworker was just dealing

with the emotional side of the diagnosis but when I felt like me doctor kept

adjourning my referral, my case worker put in a medical referral. I wasn’t too

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long waiting on a hospital appointment; I think it was about a couple of

months. I do remember feeling very anxious during this period. I had heard a

lot of war stories about the old treatments and I was thinking the worst. My

fears were that I was not going to be able to mind my children or go to work

etc. I ended up getting an appointment for Clinic 6 in the Mater Hospital. My

Hep Support worker attended the first appointment with me where they took

bloods and done a Fibroscan on me. The nurse and the doctor had done a

Fibroscan on me previously but couldn’t get a clear reading.

Jeremy was the nurse I dealt with in the Mater and he was brilliant. He

explained everything to me and made me feel quite at ease. When he did my

Fibroscan, he was able to get a reading. The score showed that my scan levels

were above 12, placing me in the category of having cirrhosis. Jeremy was

really good at explaining to me what this meant and reassured me that my

blood results were not matching up to a diagnosis of cirrhosis; he explained

that the reading could be because of fatty tissue. I felt assured when dealing

with him. Also the fact that I had a support worker with me helped because if

there was a time I didn’t feel comfortable asking a question or forgot to ask

something she was there to remind me. Sometimes you’re not able to say

things so when you have a bit of support it makes it easier to say things and

then it’s out in the open.

The advice given to me was to me in the hospital was to eat something small

before the medication, drink plenty of water and try take the meds at the

same time every day. I was put on a treatment called Zepatar. This was a once

a day pill for 12 weeks. I found the first 2 weeks tough; I had just had a chest

infection and had just finished a course of antibiotics prior to starting so I

wasn’t feeling 100% either way. After 2 weeks I had to go back to the hospital

to collect my meds but when the pharmacist seen me she didn’t like the look

of me. I have to say they were great. They sent me for a chest x-ray and done

bloods. I was given another course of antibiotics which I probably wouldn’t

have got as quick if I hadn’t have been linked in with the Mater. When I went

home my ma was so happy to know that I was getting this care.

In regards to side effects as I said after the first 2 weeks I was ok; then I started

to get these really bad headaches. It had been explained to me at my first visit

that sometimes headaches can be a side effect but was told if I couldn’t

22

manage them with water and paracetamol to present to clinic, so I knew what

to do. My Hep support worker rang the pharmacist in the hospital and they

told her to bring me in to clinic where Jeremy prescribed me a migraine pill

called Acupan. These worked for a while but then again the headaches got

more intense. There were days when I was sitting with me head in me lap or

couldn’t get up for work. Once again my Support worker rang the pharmacist

where they told me to take paracetamol on top of my migraine pill and if this

didn’t work to take an ibuprofen also. So this is what I did for the rest of my

treatment regime.

Another possible side effect I found on the treatment was poor sleep. Now I’m

not a great sleeper at the best of times in any way but when we said it to the

nurse he said that sometimes this can be a side effect. I did feel a bit more

depressed but this could be to do with dealing with the constant headaches.

Also I did once get a little bit of itchy skin but this was easily managed with

anti-histamines. To manage the headaches I used to close the curtains and

light me oil burner with lavender and try to keep the headaches at bay,

because once they started they were hard to get rid of. I was often left in tears

because of the headaches; there were a few occasions where I had to leave

work because of them.

I’m a week finished my treatment and I’m feeling happy that I succeeded in

finishing it as I have never followed anything through in me life. I do feel that

having the support of the team in Saol was one of the reasons I did complete

the treatment. I haven’t had a headache in the last two days and this has made

me so happy. The sleep is a bit better but as I said this has always been a

problem for me. The fatigue seems to be lifting a bit. I feel like completing the

treatment has increased my confidence, ‘cause now I don’t have Hepatitis. In

my house it has always been a big thing. Like me ma would always worry about

my toothbrush lying around and things like that. The fact that I had Hepatitis

made me feel different to the rest of me family but now I don’t have it, I have

more confidence. I feel like people can throw it in your face that you have

Hepatitis, but now I don’t have it no-one has that power over me. It feels good.

There is a lot of stigma attached to Hepatitis C, for me it was a big secret. I

would have never even have said to me friends that I had Hepatitis C, but now

23

it’s like I’m proud to say that yes I did have it but I done the treatment and I

cleared it. I try to encourage other people on the clinic to do the treatment.

For anyone thinking of going on the treatment my advice to you is to be honest

with the medical team 100%. I can tell you from my experience the nurses in

Clinic 6, whether it be Jeremy or Eileen, they won’t judge you in any way. If

you’re still on street drugs just be honest about what you’re taking as some

drugs can interact with the treatment medication. But if you tell them what

exactly you’re on they will work something around you without judgement.

Also water, water, water drink as much as you can because it really does help

with the headaches. My final point would be to tell people to do the

treatment. It is adding years on to people’s lives. Although I was kind of

unlucky with the headaches, I must say they are nothing in comparison to what

the treatment does for you.

24

By Tara

I found out I was Hep C positive in 1999 when I was pregnant on my first child.

The hospital had done bloods on me and when the results came back they

called me into a room and told me they had a bit of bad news for me. At the

time, how stupid and naïve I was I was just happy they didn’t tell me I had HIV.

The doctors were looking at me like I was mental; this woman has just been

told she has Hepatitis C and she’s happy. When I think about it now, there

were probably more people dying from Hep C than HIV. My belief at the time

was that it was nothing to worry about; I just thought I’ll be grand. Although

that was the year I was diagnosed, I think I would have had it for a few years

before that.

I contracted the virus through using; in fact I even know who gave it to me. I

was 16 at the time and injecting heroin. I had been smoking heroin for about

three years and then I began using needles. I remember the day. There was a

drought on and good heroin was hard to get. I went to me dealer and he told

me that what he had was not for smoking, it was just chasing on the foil. So I

had no option other than to use, after that one time I never went back to

smoking, I thought it was a waste of time. I never went to a needle exchange,

in fact I didn’t even know there were such things that existed. I never asked

questions as to where people got the needles from. I was so innocent in

regards to contracting anything; these were my friends I was sharing with and I

had no worries about getting anything from them.

25

For a long time after diagnosis I never thought about the Hepatitis. Then I

ended up on Castle St Clinic where I was referred to James’ Hospital. Now I

used to turn up for some appointments and not for others. You have to

remember I was actively using at the time, so showing up to a hospital

appointment was not on my list of priorities. If I had stuff to wake up to I

would go, if I didn’t I wouldn’t go; so chances were that most of the time I

didn’t go.

When I did link in, one of the times they did a biopsy on me and to tell you the

truth I never even went back for the results of that. They’re probably sitting in

a file somewhere in James’. I remember getting it and thinking, ‘Jesus this is

going to be a big lump of me liver they take out’ and when I saw it in the urine

pot, it was like a little worm and there was me thinking I was gonna die. But I

wasn’t that worried as I never even followed up after that. There were

numerous letters sent that I never responded to. They end up saying that I

would just have to be re referred back through my GP. I literally just put it to

the back of me mind and continued using drugs. For years I didn’t take a break

from me drug use. I had periods where I was stable but never clean or drug

free. Even when I felt I was stable I was still on 100mls on methadone and a

few trays of tablets.

How I ended up getting the treatment, I was living in Ballymun at the time and

woke up one morning dying sick. I thought, ‘I can’t do this anymore’, so I got

the bus into Castle St. and asked Dr Margaret Burke to take me back on

because I was dying sick and rattling. She said she was gonna put me on

Suboxone. I didn’t want Suboxone, I wanted methadone. That’s how I ended

up back linked in with the Clinic. It was during this period that I ended up

pregnant again. On one of my visits to the hospital I was told there was fluid

on the baby’s neck. They thought it might be that the baby had Down

syndrome but rather than feeling sorry for the baby I thought, ‘Poor me’ and

ended going out using that day and over-dosed. Lucky enough I was found. I

ended up being admitted to the Coombe because I was deemed a danger to

myself and the unborn baby. From there I was transferred to Cuan Dara and

then to Ashley house. After graduating from Ashley, I found meself with little

or no support and hence ended up doing what I know best, back using. During

this time a letter came to my mother’s from Castle St Clinic offering me the

26

new treatment for Hep C. I ended up back in Castle St, back on the Suboxone

and that’s how I got the treatment.

Both the Doctor and the nurse, Gail, in Castle St explained everything to me. I

had a good relationship with them as Gail had offered me the treatment

before whilst I was in Ashley House but I wasn’t ready to go on it. I only had a

baby and mentally I wasn’t prepared for it. The day that I was offered

treatment I was on my own in the Clinic but that wasn’t a problem. I voiced

my concerns to the doctor but she was very good at putting my mind at ease. I

was thinking I’m gonna get sick and I’m doing so well on the Suboxone that I

don’t want to jeopardise it. But the doctor was great at explaining. I have to

say I always know that Margaret has my best interest at heart; she knew that I

would be well able for it. If I ever went into her complaining of anything her

answer would be, ‘There’s no side effects, your grand!’ But actually she was

really supportive about it. I started me treatment in Castle St Clinic. The

medication that was prescribed for me was a drug called Epclusa; I was on this

for a period of 12 weeks and it was one pill a day.

When I first started taking the treatment I was waiting for these side effects to

start. Every morning I would wake up waiting for something to start. I was

waiting for a headache; I was waiting for this and that, but it didn’t! So for the

first few weeks I flew it. I started a new job and sure no one even knew I was

on it until I happened to mention one day that I was five weeks into it.

When I first got me bloods done me viral count was very high, I think it was

close to a million, but after five weeks of treatment it was down to under 100.

Now I did find as me viral count dropped I did start feeling off.

First of all me sex drive went completely; I didn’t want anyone near me or

touching me. Also I did feel a little bit nauseous at times, but that was only if I

didn’t eat anything with the tablet, so maybe if I was rushing out the door I’d

end up feeling sick, but I suppose it’s like taking any tablet it can rip the

stomach out of you if you take it on an empty stomach. But I have to say I

didn’t get headaches, me sleep was a bit fucked-up but I still managed to get

some sleep. I mean from what I gained from it, I got very little side effects. I do

hear other people saying about side effects they experience but personally I

found my side effects very minute; I think I flew threw it.

27

The only time I experienced side effects were during the last few weeks, but

when I brought this up with the nurse she explained that because my viral load

had dropped so low and I was still taking the same strength of medication it

was having an effect on my body. The Hepatitis was gone but I had to continue

the last few weeks of medication to keep it at bay. I felt very fatigued but as I

said this was only at the end of the treatment cycle.

I made a decision when I was starting the medication to start eating healthy.

This meant stopping with the takeaways, making me smoothies, having a

breakfast, lunch and dinner. I would do me prep the night before and get

meself organised. I do think this helped a lot. In relation to support whilst on

treatment I did have one friend who had been through the treatment herself,

so she was a great support to me. I didn’t really need to ring her or anything

but it was good to have someone to chat to who understood my journey and

where I was coming from.

Another great support was my family, I was a bit surprised of this as me Ma is

78; she doesn’t really understand what any of this is. Me Ma was so proud of

me for doing it, and even me 19 year old son. To sit and explain to him was

hard but he ended up being a great support to me. And I also ended up starting

work in the Saol project where the Hep C support team were a great support,

but at that stage I was almost finished me treatment.

I’m finished me treatment now 10 weeks, and I have to say within 2 weeks of

finishing I started to feel this energy I never had before. I feel better now at 40

than I did at 20. I’ve recently had a bout of sickness and even through that I

still felt like I had more energy than I did previously, I was still up hoovering the

stairs and things like that. Now that I’m finished and Hep C free I do still

sometimes forget, like I went to the hospital last week about an upcoming

operation I’ve to get and I found meself saying I have Hep C, then it was like

Jesus no I don’t. And that’s a great feeling, I feel proud of meself for

completing it. It’s amazing how one tablet a day for 12 weeks has added so

much to me life Whether you’re talking added years or even the energy to run

around with the kids, because before I started the treatment say I brought the

kids to the balls, well I would be sitting down looking at them, whereas now I

28

can get up and run around with them. Even the kids notice the difference in

me. Other things I’ve noticed since finishing the treatment is a difference in me

hair and me skin, all for the better. Another positive for me was that I lost a bit

of weight, nothing to do with the treatment but me diet was better, I was

taking more care of meself whilst on it. On the treatment I did have a little bit

of foggy brain, but since completing it, I find me memory is getting better (now

it was never major memory loss, a few stupid little things).

My advice to anyone thinking of going on the treatment would be to 100% go

for it. I have to say I was terrified; I refused the treatment because of my fears.

I came up with every excuse imaginable not to go on it. These fears were based

on seeing my friend going through the old treatments and this frightened me.

But these new treatments are so easy so I would say just go for it! If I can get

through it without moaning anyone can. My top tips would be to try eating a

bit healthier, getting yourself into a routine, even if you don’t feel tired get

yourself to be and if you find your head racing try a bit of meditation. Also

increase your exercise, even if it’s going for a walk because it also helps clear

the head.

Don’t let your head do a number on you, it’s only 12 weeks and I assure you,

they fly in. I couldn’t believe when the clinic told me that they were giving me

my last dose of tablets. Another tip I would give is to drink plenty of water and

also don’t be afraid to talk to someone who knows and ask for a bit of support.

Mentally the impact of getting rid of the Hepatitis is that you no longer have to

be embarrassed about having Hepatitis, because people do judge you. Now I

feel proud to be able to go into a Doctor and say yeah I had Hepatitis but I

cleared it, and there again you don’t have to mention it all if you don’t want to.

There’s a feeling of power in that, not having to declare it because I don’t have

it! I’ve recently had a post treatment Fibroscan done and the results just

amazed me. My Fibroscan score has dropped to 3.5 now. It was never bad to

begin with (+I started with a score of 5.7) so I didn’t think there would be any

change; I nearly fell off the bed! The nurse told me that my liver was healthier

than her liver! It’s funny to think that in the past I wouldn’t have been giving

the treatment because I wasn’t bad enough, it’s great that now the treatment

is given to everyone no matter how low their score. If you test positive you are

entitled to be treated.

29

My biggest regret is that I didn’t take the treatment sooner. Knowing what I

know now I would have definitely taken the treatment when it was offered to

me last year. I would have no reservations like I did last year. Whether it was

just having a baby or detoxing etc. I know now that I could have easily done

the treatment regardless.

30

By Eugene

I was first diagnosed with Hep C in 2006; I had been an active IV heroin user at

the time. I’m not really sure how I got it to be honest but I think I got it from

using someone else’s spoon. That’s the best guess I can give ye because I didn’t

ever use anyone else’s works or anything like that but I did borrow a spoon off

someone so I think that’s how I might have got it. As I said I never used after

anyone else. I regularly attended needle exchanges but there would have been

times when I didn’t get to an exchange but then I would just reuse my old

ones. Now they would be blunt and all, but they were me own.

At around the same time I would have also been into using coke. I would have

been snorting it. There was a group of us who used together and we would

share notes and straws and that kind of stuff. Now I know that I could have

picked it up that way but other than that it had to be from a spoon. I didn’t

know about things like spoons and that. I would have been really conscious of

having my own works and spikes but I wasn’t aware of the dangers of sharing

spoons and stuff. But, again, I can never be sure of how I contracted it.

How I found out I was positive was that the clinic I was on were checking my

blood for Phy’ levels and they obviously tested my blood for Hep also. The

nurse from the clinic called me in to her office and she explained to me that I

had Hep C. Funny enough it was the same nurse who called me into the office

years later to offer me to go for the treatment. When I was diagnosed although

the nurse did explain to me about Hep C, I still hadn’t got a clue about it. I just

lived in denial for years about it.

The first time I was offered to go on to the treatment I said no. It was the old

treatment where you had to inject yourself with a needle (interferon). It was

only then that I started to become interested in it. I was told from a friend that

it could be cured and this led me to go back to the nurse and inquire about it

again. I was offered it again two years later and when the nurse explained to

me that it was tablet based and no interferon that’s when I said yes. I filled out

31

the forms with the nurse in the Clinic and then I was referred to Eccles St for

treatment. City clinic sent off all my details to the Liver Clinic and then they got

in contact with me through the post. I can’t remember how long I was waiting

for the appointment date but I don’t think it was that long. On my first visit to

the Liver Clinic in Eccles St they took my bloods, blood pressure etc. and told

me to come back in three weeks. On me second visit I met with the doctor who

explained to me that I was going to start on the treatment for 3 months and

explained everything about it.

For each of these times I met with a medical professional in relation to either

my diagnosis or treatment I was on my own. I particularly remember going to

Eccles St to begin the treatment and I have to say I was shitting it. I didn’t know

what to expect. I didn’t know whether they were going to tell me I had more

than Hepatitis. I was shitting. Looking back I definitely regret not having

anyone with me. I really think it would have helped ease my nerves. When

you’re on your own the thoughts that were going through my head were just

leg it, fuck it you’ve been living with Hepatitis, just continue. It was a very

frightening experience.

Prior to starting the treatment I didn’t really know much about Hepatitis. To

tell you the truth I didn’t even know which Hepatitis I had. I didn’t know

whether it was A or B or what it was. In the end it was Hepatitis C, genotype

one. I have since found out that this is the most common type in Ireland. I was

put on treatment for three months. The name of the treatment I was on was

Zepatir.

Everyone on the street were telling me horror stories about the treatment,

some of the things they were saying were, “you won’t be able for it,” “you will

go through hell on that treatment,” “you will suffer awful headaches,” in my

opinion that’s ‘street doctors’ telling you what they don’t know.

In reality they hadn’t got a clue. When I started on the treatment, Caroline the

nurse gave me a pamphlet with a list of the common side effects of the

treatment. I took it off her as I didn’t want to be rude, but when I got home I

threw it in the bin. The reason I threw it away is because I am the kind of

person who, if I had read it, would have felt like I was experiencing every one

of the listed side effects. In reality what I did experience was tiredness for the

32

first week and from then on the rest of it was a breeze. I probably would get a

little bit narky at times but other than that I was fine. I did experience one or

two headaches whilst on the treatment but these were nothing that a

paracetamol didn’t get rid of. To be honest at first I didn’t even realise that the

fatigue was a side effect, it was only in chatting to the nurse on my visit that I

explained to her about the tiredness coming up hills and that, and she assured

me that it was sometimes an effect of the treatment.

I managed the side effects as best as I could, I rested when I got the chance

and as I said the paracetamol worked for the headaches but other than that I

was fine.

I have to say the nurses in the Liver Clinic were very helpful. They went

through everything with me and when I told them that I didn’t understand

some stuff they took me aside and went through everything with me in

language that I understood. The Hep C specialist nurse was very good to me.

She went through my treatment plan with me and she also gave me a pack for

dividing my treatment into day and night which I found really helpful. Every

time I went up to the Liver Clinic, we would have little talks about the

treatment and how I was finding it and stuff. These little chats really changed

my mind-set and started me thinking about how beneficial this treatment was

going to be for me.

When I first attended Eccles Street for treatment, Caroline the nurse offered

me support from a Hep Buddy. I didn’t accept the offer as I had a friend who

had just gone through the process and I leaned on him for support. He was a

great support to me; he offered me a listening ear whenever I needed one. I

could drop down to him whenever I wanted for a chat. I could tell him things

that I couldn’t or wouldn’t tell me mother or father or brother etc. I could say

whatever I wanted to him and I wouldn’t be judged. The fact that he could

relate to me as he had just completed the same journey as me made it easier

for me to talk to him, we were on the same level. I was doing a day programme

at the time so I got a bit of support off them also. I think if I hadn’t of got the

support I would have found the journey a lot harder as I wouldn’t have known

a lot of stuff.

33

I’m finished the treatment now about eight months. The difference in me since

I finished the treatment is that I feel like I have more energy. I feel like I look

different like I have colour back in me face; me mood has changed. I feel like

I’m back to me old self, I’m having a laugh with people again, I’m able to have a

buzz. Since I cleared the Hep me life has changed for the better; I’m able to do

things that I hadn’t been able to for a long time, things that you would take for

granted like going for a game of pool. I wasn’t able to do this as I simply didn’t

have the energy. Even things like getting up in the morning, having your wash

and not feeling like you have had to drag yourself out of the bed. Even down to

having a bit of breakfast. I didn’t do that before I went on treatment, I just

couldn’t be bothered.

One of the highlights of completing treatment for me was the fact that I was

able to sit down with me ma and explain to her what exactly I was going

through and had been going through in the past. It was great. I felt brilliant to

be able to say to her I had this illness and now I don’t. She would have been

aware that there was something wrong but I never actually sat down with her

and discussed it. I did give her a few pamphlets but that would have been it. I

would have had all of my own personal hygiene items such as nail clippers and

stuff like that which I would have kept in me room. So she knew there was

something going on but wouldn’t of known exactly what. Sure how could I ever

sit her down and fully explain something that I didn’t fully understand myself.

But when I was able to sit down and tell her it was gone, the excitement in the

gaff was unreal, it was like a party for a week, she was delighted.

Another positive of the medication was the fact that my sleep improved. Prior

to starting the medication me sleep pattern was very bad. Now that I’m

finished, I’m sleeping like a baby, I feel like I’m able to walk further distances.

I’m able to have a game of football with the lads, me energy is so high. I can’t

thank the nurse who put me forward for the treatment enough. Since finishing

the treatment I have started to look at other areas of my health where I need

to work on, for example I’m linking in with a dentist to get me teeth done, also

I’m waiting to go into Beaumont to detox. Prior to treatment I wasn’t

interested in any of that but since finishing the treatment I’m starting to look

at my life differently and starting to make plans for the future.

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I didn’t tell anyone other than family that I was going on the treatment; I didn’t

feel like anyone needed to know. There’s a lot of shame and stigma attached

to having Hep C. People view you different.

For anyone thinking of starting treatment my advice to them would be to not

listen to anyone on the street (street doctors as I would call them). Don’t listen

to people with negative stories to tell because most often they don’t know

what they’re talking about. Listen to the professionals and the peer workers,

people who know what they’re talking about. You will feel a lot better after

speaking to people who know. If I could change one thing about the treatment,

it would be the fact that I never started it sooner.

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By Laura

My name is Laura. I first found out I had Hep C around 2010. I

don’t really know how I got Hep C but I do know that my partner

was positive for Hep C and we were having unprotected sex and

also I would have used stuff like his toothbrush, razors etc. At the

time I was smoking heroin so I know I didn’t get it through

sharing equipment. I did eventually go to using needles but that

was after I was already diagnosed.

So that’s how I think I became infected with Hep C, you know yourself when

you’re with someone a long time, you don’t think anything of sharing personal

items. When I think back now it must have been that his gums were bleeding

and mine must have been also and that’s how I got it; or else it was through

unprotected sex.

For a long time after I was diagnosed I didn’t do anything about it as my drug

use was so chaotic, it had spiralled out of control. I was homeless; I was on the

hemp shop stuff and my life was basically a mess. It wasn’t until about 3 or 4

years ago that I start taking an interest in myself again. I linked in with Ana

Liffey and they referred me to the Mater. I was about a year waiting for the

first appointment. It was also Ana Liffey who then referred me to the Saol

Project once my appointment date was coming up as they offered support for

women going through the treatment. It was there that I met Vanessa. She was

a great help to me during this time. She accompanied me to hospital

appointments and also broke down in terms that I understood what had been

said to me. She also gave me the courage and confidence to ask questions for

meself about my treatment. Before meeting Vanessa I was nervous about the

whole thing. I was going on what I had heard on the streets. While I was

waiting on my appointment date I was very nervous about starting the

treatment. I had been told stories that it’s going to do this to you and it’s going

to do that to you, you will feel this way etc. etc. But I knew it was something

36

that I needed to do, I was feeling weak and I knew myself that my body just

wasn’t right, I wasn’t feeling right in meself.

I had to attend the Liver Clinic once a week on a certain day and time. I got

bloods taken and also my blood pressure. I would then head over to the main

hospital to the pharmacy to get my meds for the week. I was on a medication

called Harvoni for 12 weeks, one pill a day. I was advised by both the nurse and

also the pharmacist that I was to try take the pill at the same time every day. I

had a genotype of 1a which is the most common type in Ireland. Before getting

my treatment I had gotten a Fibroscan done, the score of that was a little bit

high (12.5) and it showed that I had mild cirrhosis of the liver. Vanessa

explained to me that this was scarring of the liver.

I was grand on the treatment; the nurse in the Liver Clinic was very good at

sitting me down and explaining all the symptoms that I might get, such as slight

headaches, tiredness. But I have to say that I was grand, I didn’t suffer with

anything. At the end of treatment, for about a week after I was narky,

everything my partner was saying to me I was taking up wrong, but other than

that no, nothing. An odd time I did get a slight headache but not that bad that I

would look for a paracetamol. I was given good advice by both the nurse and

also Vanessa about drinking water and this is what I would do if I felt a slight

headache coming on. I have to say, me personally, I found I flew through it.

I had a lot of support whilst going through treatment. Vanessa from Saol would

have been a big support and also Rory my keyworker in Ana Liffey was a great

support and my partner was also a great support to me. I also knew that I had

the support of Saol and all the women there.

I’m now finished me treatment about 5 or 6 months. Since finishing the

treatment I feel like I have lost a bit of weight. Me liver is not swollen anymore.

Before going on treatment if I had put me hand on the right side, where me

liver is I would have been able to feel that me liver was swollen. I also think

that me skin has changed completely, I’m getting a lot of compliments on how

well me skin is looking. Also me nails and me hair are looking much better. But

the biggest physical difference in me is the weight, cause me belly was so big

with the liver being bad.

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All through the treatment me sleep was good, but I did find that the week I

finished the treatment I was a bit snappy, but I wasn’t long coming round from

this. Another big thing I noticed was the energy after I finished the treatment.

I felt I had a lot more energy. I was able to jump up out of the bed and straight

into the shower. Before the treatment everything was an effort to me, so I felt

great. Once I was finished the treatment I felt proud of meself, I felt like I had

done something good for me. I had put my party days behind me and was

ready to start looking after me. I felt proud that I stood up and didn’t listen to

others who were telling me don’t do that treatment it’s going to make you ill.

So yeah, I was proud of meself. Unlike others I have never felt ashamed or

embarrassed of having Hepatitis C.

For anyone that is thinking of going on treatment my words to them would be

don’t listen to other people telling you about treatment, everyone is different

and everyone’s body is different. This new treatment is not like the old

treatment on Interferon. Don’t be afraid; drink plenty of water and if you do

get side effects drink more water and basically just go do it because you need

to look after yourself. Also if you’re not feeling great, speak to someone: a

doctor, a nurse, or a friend. If I had to, I would do it all over again.

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Sabrina

My story is a bit different to

others; I have been through

treatment twice, once on the old treatment and then again on the new

treatment. I first did the old treatment of interferon and ribavirin in 2007 for

12 months and cleared it. I did an injection once a week on a Thursday and I

think 5 or 6 pills a day. I remember I would only be coming back to myself and

the week would come round again and I had to get me injection and this would

but be back 10 paces. It was a harsh regime but I felt I sailed through that old

medication. Now I did see others who suffered through that treatment but

personally I didn’t find it that bad. But in the end I cleared the Hep C.

This brings us back to 2014 when I was diagnosed positive with Hep C for a

second time. I had been doing really well and was living out of town at the

time. I was living with my partner and for one reason or another we ended up

losing the house we were living in. This I feel was when it all started to go

wrong again. We ended up moving back into town and that’s when the vicious

circle of using drugs started again. Although I had been treated for the Hep, my

partner had never been treated for it, and as you do when you’re in a

relationship we shared everything, we were having unprotected sex and also

sharing drug paraphernalia. We were back injecting heroin and also on the

crack and head shop stuff. Although we did go to the exchange when we could,

this wasn’t the norm. If I’m honest, it was like your birthday when you got new

works, because of the damage you were doing to your veins when using the

blunt ones. So as you can see I can’t say for sure how I got it again but there

were plenty of risk factors involved in me getting re-infected. I had ended up

back on Pearse St Clinic and this is where I got retested for Hep C. When the

results came back positive I wasn’t too shocked as I kind of expected it. After I

was diagnosed I just wasn’t ready for treatment again. My life was chaotic. I

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wasn’t in the right head space for it. As time went on I was hearing more and

more about this new treatment, there was great reviews about it. The

treatment times were much shorter than the old treatments and also there

were no injections this time; they were interferon free.

When I eventually felt ready for it, it was through Pearse St. that I ended up

getting referred to the Mater, Clinic 6. I think I was one of the first people on

Pearse St Clinic to be offered the new treatment. I had a really hard time on

this new treatment, I thought it was going to be so much easier than the old

one, but not for me. Maybe it had something to do with me having done

treatment before, but I found this treatment really tough. Personally I felt it

“booted me around”. I had to do a course of 24 weeks, and I think I spent most

of this time in bed, I was exhausted. Me mood was all over the place. Talk

about mood swings, I was constantly in a bad mood! I was like the anti-Christ

himself. I also lost weight and me hair thinned out on this treatment. I seemed

to be getting a lot of urinary tract infections which for a while were being

misdiagnosed; I eventually got an injection of some sort which seemed to clear

them up. In regards to waiting for treatment, I wasn’t long waiting for

treatment at all: I was put on a priority list because my liver was so bad. I had

got a Fibroscan and it showed that I had cirrhosis. I was told that if I didn’t do

treatment straight away I was heading for a liver transplant and even at that I

wasn’t guaranteed a transplant.

When I was on treatment Jeremy in the Mater was a great support. He was

great at explaining everything to me about what to expect etc. Another way

he helped me was getting my partner on to treatment. He was supposed to get

treatment in another hospital but they were giving him the run-around. As he

used to accompany me to my hospital appointments, Jeremy got to know him

and offered him treatment also. I think that this is someone everyone needs to

know. If you are getting treated and your partner is also Hep C positive it

makes sense for both of you to be treated together. My partner and family

were also great supports to me; another person who would have supported

me was the counsellor in the Clinic. Well, in all honestly, I probably talked

more to the receptionist than him, but I did have good supports. There was

also a Hep C specialist nurse in Pearse St who I could call on if needed.

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I was on a good few tablets; I had to take four in the morning and five at night.

The hospital was great, they used to give me the treatment in blister packs so

it was much easier to take, and I knew what I had taken.

Some of the advice I was given when I did start on the new treatment was to

be careful of me skin in the sun. (I was advised to wear caps and that). I was

also suffering from a terrible itch of my skin, (Jeremy prescribed me anti-

histamine and also tubes of Silcock’s Base to keep my skin moisturised). I was

also advised not to take Pharmaton and also told that the drinks I was drinking

Vithit that had ginseng in that to avoid them. Initially I had to go to the hospital

once a week and as it progressed, I would be only up once a month for me

blood tests to check the virus levels. Once you start the medication it is vital

that you take it every day until the course is finished.

Managing side effects: what I did find was that I did more apologising during

that period that I have ever done in me life, because I was aware that I was so

snappy. I was also aware that I needed to apologise to people as it was my shit,

not their fault. My family and friends were very understanding; they gave me a

bit of leeway. Other than that I just got on with it as you do.

It’s two years since I finished treatment. Since finishing, I feel like I’ve just

came back around to meself. I’m not snapping all the time anymore and am

not so easily irritated by the least thing. I stopped getting the mad horrible

agitated irritated feelings. I do feel that I have a lot of anxiety since finishing

the treatment; I also feel that my skin has never been the same since

treatment. Only recently I got a severe reaction from the sun, me face flared

up terrible. Whilst on treatment me sleep was a bit all over the place but I’m

finding it coming back now. I’ve heard of people with issues relating to

memory both before and during treatment but this was never a problem for

me.

For anyone that is about to begin the treatment my advice to you would be to

be careful of your skin, especially in the sun because you do become a bit more

sensitive. Another thing I would say to anyone is to just mind your mind, look

after your mental health when you’re going through treatment. The mind can

play tricks on you and if you suffer from depression of any sort it can escalate.

Also watch what you’re eating and drinking,. Try having a healthy diet with

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plenty of water. People forget that when your liver is down or not working to

its full capacity you get tired and lose energy and that, so when you’re on the

medication this adds to the tiredness so you’re losing more energy. Therefore

you need to be eating appropriately to keep your energy levels up. Make sure

you’re getting enough protein as this helps repair the body.

For meself I know I need to follow up with the hospital, even though I went

back for my final bloods, I never went back for my follow on care. I’m now in a

group where I have been learning more about the liver and how it works and I

know that I need to go back to check on my cirrhosis. Clearing the virus is one

thing and although this is great for anyone that is living with cirrhosis of the

liver, it is important to know that this can develop into cancer if left

unchecked. Annual appointments with your liver specialist can help keep an

eye on your liver. Also lifestyle changes such as incorporating exercise into

your daily routine; reduce your salt intake and learn ways to manage your

stress.

EAT LESS SALT

DO MORE EXERCISE

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By Mark

My son passed away in October 2001 due to suicide. At the time, I had a

mental breakdown and was admitted to the Mater hospital. It was there that I

got tested for both Hep C and HIV. When the results came back I was told that I

had Hep C but the HIV test was negative. The words of the Doctor were that I

had Hep C but it was lying dormant therefore I was not to worry about it. Prior

to this I had been caught up in active addiction and was using both heroin and

cocaine intravenously. At the time when I was using I was always careful about

not sharing any equipment with anyone else but I remember one time I went

on a weekend trip to England where I shared a syringe with another person. I

think this must have been how I came to be infected with Hep C. After I lost my

son and I went through the breakdown I became free from drugs, it was like his

death was the catalyst for change that shocked me into becoming drug free. I

was still on methadone but I never went back using drugs intravenously. As far

as I was concerned and from what I took from the Doctors, I had this virus

inside me but it wasn’t causing me any harm. It was lying dormant so they said

and the only way it would flare back up was if I start using drugs again.

Late last year I became involved in an education and support group which took

place in City Clinic. It was here that I heard for the first time that the term

dormant was an incorrect term to use in relation to Hep. It was old

terminology. You either have it or you don’t. This prompted me to go and get

re-tested in the clinic. It was about two weeks later that Peter the nurse called

me to say my results were back and they were negative; I did not have Hep C.

My initial reaction was shock; it was a sigh of relief to be told that I did not

have Hep C but after the initial reaction I became angry and frustrated. I had

been living with the thought of this disease for the past number of years. I had

had difficult and awkward conversations with my loved ones about this virus

and now I am being told I don’t have it at all. My partner had been on at me all

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the time about it; she didn’t have it and she couldn’t get this “lying dormant”

thing out of her head.

Looking back, the thoughts that I was living with Hep for 8 or so years has had

a profound impact on both my lifestyle and my relationships with both loved

ones and immediate family members. I remember having to sit down with my

late mother and tell her about the initial diagnosis. She was old fashioned from

the country and she just didn’t understand. I tried explaining to her that it was

in me system and that there was a chance I could fight it off but she didn’t

understand. There was so much shame and stigma at the time in relation to

H.I.V and Hep C that she thought I was going to pass it on to everyone.

Rather than being happy about my new diagnosis I began to get angry about

the years I spent believing I had this virus and the impact it had on my life. I

brought it up a number of times to different doctors and nurses and that was

always the same reply “it’s lying dormant”. I feel that my initial diagnosis has

caused rifts in both my romantic relationships and also with my immediate

family. From the day I was diagnosed I felt different. I felt like I was pushed out

or banished somehow. I began to feel like family members were always going

to be out if I suggested I would drop up to them. I stopped going to the family

home so much. Even when I was there, I always felt that I didn’t fit in. I always

felt like I was treading on egg-shells and although it wasn’t made a deal of, I

had me own bowl and me own plate and cup. If someone was making a cup of

tea or whatever it would be said Mark’s cup is there in the corner, or Mark’s

knife and fork are in that drawer. Stuff like that hurts, but also I don’t really

blame me mother or me family as it all stemmed from fear.

For years the torment I went through believing that I could infect someone

else, even down to my own kids. I remember when they were smaller and if

they fell and got a cut or something, I was always nervous about treating them

in case I infected them somehow. Stuff like this affects your relationship with

your children. I feel like I was let down by the system, the fact that I was still

attending a clinic and yet I was left for years internalising something, when a

simple blood test could have told me the correct information years ago. Maybe

if things had been different and I was given the all clear sooner, maybe my life

could have been different, maybe my relationship wouldn’t have broken down

and maybe my life in general would be different. It wasn’t only a diagnosis of

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an illness; it had other effects on me, for one I feel like I lost me confidence

and also my self-respect to a degree.

I know I’m not alone with this story. I know there are many more like me who

were diagnosed and left be. If I was to give a message to someone, my

message would be to go and get rechecked, no matter what your status

is.There is no such thing as lying dormant, you either have the virus or you

don’t. There are 30% of people who will come into contact with Hep C but

their bodies will spontaneously clear it, so even if you were given a diagnosis in

the past make sure you get re-tested. For me, I don’t know how I lost it, but

maybe because in the past I would have done the gym a lot so therefore I

probably had a good immune system. I only wish I would have found out

sooner that I had lost it. Although there are no physical scars or reminders in

my body to say that I had Hep C, I have been left with plenty of emotional

baggage from the initial diagnosis.

In regards to the treatment, the treatment now I believe is so much easier than

the old treatment. I have observed a few people going through it and from

what I see, once completed the person is transformed. I see the confidence

instilled back in them. I believe they stand taller. They are getting rid of

something out of their body that was invading it and this in itself brings about

change; it’s like they are set free. Again, I feel like I was completely let down by

the system. In hindsight, my life could have been so much more, my

relationships could have been so different. But today the message I want to get

out to people is get tested, get re-tested and if necessary do the treatment.

There is no need for anyone today to go through the years of hell that I went

through. There is a cure and the treatment is available to everyone who tests

positive. There is no such thing as ‘lying dormant’; if you test positive, get

treated.