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Roger's Story
It was the mid eighties, and registered nurse Roger wasn’t feeling particularly well. Erring on the side of caution, he decided to go for a routine blood test to find out what might be causing his mild flu-like symptoms.
A month later the answer came back.
“I was told that I had chronic hep B. The only thing I was told was that I would have an increased risk of liver cirrhosis and/or cancer in later life.”
Although it sounds unusual to be diagnosed with hepatitis B without having any major symptoms, it is in fact the norm. Most people living with chronic hepatitis B do not have any symptoms of infection which means they may feel healthy and completely unaware they are infected.
“I really didn't give it much more thought until 1992 when I became quite ill with Delta Hepatitis [Hepatitis D] and was hospitalised for about a week. It took me many weeks to recover from this but again when I did, I didn't give it much thought.”
As Roger recovered from hepatitis D, his health again stabilised. However in 2003, thirteen years after his initial diagnosis of chronic hepatitis B, he received some life threatening news.
“In December 2003 I was told that I had end-stage cirrhosis of the liver and probably had about 6 months left to live. I was told; my only chance of survival was to have a liver transplant at Royal Prince Alfred Hospital.”
As he was trying to mentally and physically prepare himself for the transplant, Roger had to deal with the effects hepatitis B virus was then wreaking on his body.
“I spent most of 2004 being very, very sick, and having to work-up for a liver transplant. I had all the classic symptoms of advanced liver disease -- weight loss, lethargy, jaundice, ascites, bruising, swollen ankles, depression, and, finally Hepatic Encephalopathy. “
This was an understandably difficult time for Roger, and he required a full time carer. Fortunately Roger’s brother was able to take on the role of carer, as Roger prepared himself for the transplant procedure and his shot at making medical history. “I was to be, only, the second person with HIV to have a liver transplant in Australia.”
Remarkably, Roger did end up making medical history, but not in the way he first thought as his clinician Dr. Greg Dore called it an “amazing recovery”, following the introduction of specific anti viral therapy.
“I am, apparently, the only person in medical history to recover from a Decompensated Cirrhosed liver! I was diagnosed with Post Traumatic Stress Disorder following my recovery.
“All in all, I lost about two years of my life to illness”.
“But I have now fully recovered and am working full-time once again. I am planning a Civil Union with my partner of two and a half years on 1st November 2008, which is also my 50th birthday!”
Roger advises other people who may be living with hepatitis b or hepatitis C to “look after your liver with tender loving care, get plenty of sleep, drink lots of water, avoid all alcohol, and relax and live life to the fullest”.
“And most importantly, be kind to yourself.”
Roger credits being positive and taking these steps as an integral part of his miraculous recovery.
“I believe that being surrounded by love and support from family and friends had a huge influence on my recovery as does the fact that I meditate daily in the Buddhist tradition.”
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A Tribute to Audrey Lamb
On Thursday 6th March 2008 we lost a true champion of the hepatitis community in Australia. Audrey Lamb, founding President and Life Member of the Hepatitis C Council of NSW and recent recipient of the Order of the Medal of Australia for her work on behalf of the communities in Australia affected by hepatitis C. Her wisdom, passion and vision shaped the nature of the hepatitis community sector.
Audrey died on Thursday 6th March, following a short and very intense battle with cancer.
In 2007 Hepatitis Australia interviewed Audrey Lamb and Professor Geoff Farrell about their friendship and work over 15 years. Their hard work in the early 1990’s helped pave the way for the establishment of hepatitis councils across Australia. A special friendship grew based on mutual respect and the shared value of helping others wherever they can.
For many years Audrey had been experiencing tiredness, vague nausea, irregular bowel habits, and a poor functioning liver. In September 1990 Audrey was finally diagnosed with hepatitis C.
Unaware of exactly what hepatitis C was, Audrey’s situation was made all the worse by the lack of hepatitis C support and knowledge in the medical community. One doctor told Audrey it was a “good thing you have antibodies in your blood – that means you’re now immune to the disease” while another said it was “a very serious disease leading to cirrhosis and possible death through liver cancer”. With a first grandchild due in the December, Audrey was desperate for some basic information on how this virus was transmitted, and how infectious it was, but no information or support was forthcoming. She was told to try and get an appointment to see Dr Farrell who was leading research into the hepatitis virus at that stage.
Dr Geoff Farrell (now Professor) was working at that time at the Westmead Hospital in Sydney. The two decided that something needed to be done about the inadequate state of hepatitis C information, care and support, and together they were instrumental in creating the first Australian hepatitis C support group.
Along with others, Audrey wrote the first hepatitis C information booklet in Australia, coordinated a national network of volunteers from the affected communities and organised a 4,000 signature petition to NSW Health Minister, delivered in May 1993, calling for the NSW Government to initiate an anti-discrimination focussed community awareness campaign and for resourcing and support for the tens of thousands of people in NSW already living with hepatitis C.
An information helpline was established, but with no office space, the number was directed to Audrey’s own home, where she stayed up all hours answering calls and providing information. Geoff was always ready to provide the most recent research information and help any way he could, and so was formed a strong friendship.
In the following years as that friendship grew and developed, so did the support groups, until today when hepatitis councils are established in every state and territory providing people with information, education and support services.
Professor Farrell is now Director of Gastroenterology and Hepatology at The Canberra Hospital, and Professor of Hepatic Medicine at the Australian National University Medical School.
Audrey Lamb was fittingly honoured during the 2007 Queens Birthday celebrations, receiving an OAM for service to public health and to the community.
Our heartfelt condolences go to Audrey’s close and wonderful family, and our sincere thanks, respect, love and goodbyes go to Audrey Lamb, the strong, forthright woman who placed hepatitis C so firmly on the Australian map.
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Observe The Changes
by A. Survivor
Thirteen years before the Doctor said to me, “Go home and get your affairs in order because there is nothing further we can do for you”, I was already aware that a problem existed.
Blood had started showing up, infrequently and in small amounts in my stools. I’d kept this information to myself, mainly due to embarrassment and the possibility that it may only be haemorrhoids, something most people would pass off as not worth the hassle.
Time passed quickly. Blotches started appearing on my skin, barely noticeable at first but becoming larger and more numerous and pronounced as time progressed.
I’d been an I.V. drug user some years before and had always been partial to a drink or two.
My wife had by this time found other interests and moved along saying that I had developed alcoholic dementia. I knew these words were plain cruelty on her part and dismissed them, however I was aware that after maybe even two drinks I did have to stop and think before I spoke as my mind was easily addled.
My liver was trying to tell me something, I did not acknowledge to myself that I may have had something seriously wrong going on in there.
Some eight years ago I received a call from my ex. saying that she had had a full set of blood tests done and that she had hep C and I should hurry along to the pathologist and have our young son and myself tested. I proved positive, my son, thirteen at the time, negative which was a relief to me.
Time moved along and I found it more difficult each day to go to work. I have always been a self-employed builder.
My quoting skills have been beyond reproach, but when one needs to have 3 or 4 breaks during the working day due to nausea, fatigue and sleepiness, the battle to complete a job within budget becomes impossible.
I was at this time regularly coughing up morning blood, an indication of swollen veins (varices) in the oesophagus and stomach. Nose bleeds were a daily occurrence. I lost two building jobs in a row which financially crippled me, being a small, hugely independent operator due directly to my illness.
I cannot work now but am trying to keep my house and am battling to leave a little something for my son, as I write this.
I am classified as having inoperable, terminal, liver cancer. Last week on this day I was in a Brisbane hospital having an embolism. For me it entailed sliding a catheter up through a main artery in my groin area into my liver and shooting a toxic chemotherapy drug into the blood supply feeding the tennis ball size tumour inside my liver.
This procedure was a last ditch kind of, throw caution to the wind and try anything style of medicine. My doctors may not embrace this description of their work but they were all skilful, caring and very importantly friendly to me.
I have perhaps gained at least 6 months, but I am positive, my diet is structured and I look to the future.
As soon as the pain and bruising subsides I will be back at the local pool every morning doing my 40 laps.
Early detection is one thing; doing something about it is another. It’s up to the individual.
In September of this year I put something like 4 litres of blood on my kitchen floor in a series of violent convulsions over a 2 hour period. I was, for all intents and purposes alone. I survived, I was lucky.
A smarter man than me would have avoided the drama by doing something about his hep C earlier. Like in my case 8 years earlier.
If you find you have just been diagnosed with hep C, no need for panic or for blame or for any self flagellation, just get yourself a good solid plan. If it is caught early enough and you are clever enough to accept that potentially it gets very bad (which is the chair I now sit in) you may quite honestly only have to make minimal life style changes.
Good luck, I hope my little story helps somebody.
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Always a Hepper
By Justine.
I grew up in a very dysfunctional family. Both my parents were health professionals and were unable to deal with emotional issues. I developed asthma as a young child. When I was sick my parents medicated me and nursed me. My asthma became a vehicle for getting my needs met. Once I started school, I was left to manage my medications on my own. In retrospect, this set up a pattern of self medicating for emotional issues.
As a teenager, I felt alienated both from my family and at school. I wasn’t able to find a constructive outlet to develop my self-esteem. The only way to get attention was to act up. I started drinking and then taking drugs. I remember thinking that drugs were frightening but also thrilling. I thought everyone would be in awe of me. Instead of being geeky and self-loathing, I felt cool and dangerous.
At 16 years old, I fell into a social group where everyone was struggling in the same way. We all had troubled families and little self-confidence. I wagged school and hung out in a dilapidated bungalow. In this oasis from school and home, I found a place where I was validated and admired by my peers. I started injecting amphetamines at sixteen. They were like anti-depressants. Drugs simplify life in some ways. They gave me something to think about, to drive for – and most importantly – they muted the suffocating depression that was a legacy of my childhood.
This was in the 1980s. If anyone noticed that I was going off the rails, they didn’t mention it. No one approached me and tried to help – it just didn’t happen. In those days, you got detention or were grounded. There was no support at all.
My friends and I were introduced to this older man. We were 16; he was 28, and an experienced drug user who had previously been arrested for trafficking heroin from Thailand to Australia. He had extensive connections in the drug scene. Until then, we mainly smoked marijuana. After he arrived, we had a pipeline to copious amounts of amphetamines.
When I look back, I believe this man cultivated me and my group of friends. He was our drug dealer and his social life became a group of 16 year olds. I became his girlfriend and it was a very abusive relationship. I ran away from home to live with him. He had all the power. I had no money; my family didn’t know where I was; my only friends were buying drugs from him. He collected the dole for me but I never saw a cent. I was incredibly naïve. Until then, I had lived in an upper middle-class suburb all my life. I certainly didn’t know anything about prevention. My boyfriend must have had some experience with the dangers of sharing fits because he was pedantic about not sharing needles. We would buy a box of 100 needles and he would never share with others. He had total control of the drugs and would always inject me with his syringe after he’d finished his hit. In some ways I’m grateful to him. While I got Hep C from him, he probably protected me from other blood-borne diseases.
Things changed when the amphetamines supply dried up. My boyfriend started taking heroin but I’d tried it a couple of times and didn’t like it. I started to straighten up and when the amphetamines supply returned, I took control of measuring out my own dose. I gave myself a much smaller amount – one dose in the morning and one in the evening – just like administering a prescription medication.
It is very difficult to stop taking drugs when you live in a drug culture. There is a lot of pressure from others to maintain the status quo. I had always known that taking drugs was a dead-end for me. One morning I woke up and realized I didn’t want to do this anymore; I just stopped. When I look back, I am amazed at my single-mindedness. After I stopped, I was extremely run down. I was malnourished and slept 20 hours a day.
Even though I wasn’t taking drugs, I was still living in the terrifying environment of heroin dealing. My boyfriend ran out of money and started ripping off other heroin dealers. I remember sleeping with a shot gun next to our bed. I started taking Rhohypnal and drinking, not only to deal with the fear, but also to manage the emotional pain that had caused me to seek out drugs in the first place. When you come off drugs you are very susceptible to other addictions. I went straight into alcohol and drank everyday.
I knew this wasn’t the way to live. But I just needed a kernel of something to believe in, a sense that I could be more than this, that I could have a fulfilling life and feel good about myself. It took me about another 6 months before I left him.
I was finally able to leave when I met someone else. My new boyfriend was able to provide me with a safe place to go. I was very dependent with no education, job, money, friends or family. My new boyfriend and his family literally took me into their home and supported me. They fed me, paid for me to get my license, provided me with a car and eventually found a place for us to live in.
We were both 18, ex-users, and living in a flat together. We were trying to play grown-ups when we were really just kids. He was smoking dope and I was drinking every day but we managed to make this life for ourselves. His parents enrolled me in Secretarial School and I got my first job. That was a critical point in my life – it was the seed I’d been looking for. For the first time in a long time I felt proud of myself. More importantly, it gave me financial independence.
It was 6 years before I was diagnosed with Hepatitis C. In that time, I worked in a good job in the corporate sector, broke up with my boyfriend and backpacked for a year through Europe and Canada.
When I was diagnosed in 1992, the diagnosis did not impact on me. I was really tired and I went to the doctors who gave me blood tests including a Liver Function Test. My ALTs came back elevated. I was asked if I had ever injected drugs and when I said I had, was tested for Hep C. Getting the diagnosis was a strange experience in retrospect. I was told “You’ve got Hep C. Don’t share you toothbrush and your razor.” That was it. I didn’t have a sense of it being real. I just thought ‘I have got this thing and I shouldn’t share my tooth brush’. I didn’t understand the long term implications of a chronic illness or even about side effects. Mind you, it was ’92, and nobody really understood it.
At that time, Hep C was the least of my worries. I was still battling addictions. I finally gave up drinking but it was replaced with an eating disorder. Eventually, I started psychotherapy which I continued for the decade. During that time, I returned to study my VCE and a university degree and went on exchange to the USA. I went back to work and developed my career.
Then in 1998 I had my first flare up of Hepatitis C.
A few years after I was diagnosed, I was referred to a specialist. I would go and see him once a year and he would smile and tell me that everything was fine and there was no need to worry. Then in 1998 I felt unusually fatigued. I saw the specialist and was told that my ALTs were in the 500s. It was the first time I realized that Hepatitis C could potentially cause me serious ill health. It gave me a hell of a fright.
I am still surprised at how little information I was given by the medical profession about my illness. They are quite happy to give you information about your ALTs or tell you your fibrosis score – but often they don’t think beyond the numbers and the physical manifestations. I have always been someone to seek out more information so I did my research and discovered the Hepatitis Council who gave me support, advice, research and referrals and helped me to get to know my disease.
We all handle our health differently. Some people prefer to know as little as possible and that is a valid option. I wanted to know what I could do to manage this disease. I enrolled in a course which introduced ideas of diet, meditation and self-management. My ALTs settled and my specialist started talking about treatment. Little did I know, this was just the beginning.
I went onto treatment for the first time in 2000. It was three injections a week of Interferon and Ribavirin. I didn’t go through a clinic because I saw my specialist privately but was referred to a nurse at one of the hospitals for the initial injection. I remember crying because I was so afraid of putting drugs into my body with a needle. The nurse was very frustrated and terse with me and I was sent home with no support.
After 10 days I woke up in the night on a Saturday morning and started vomiting. I started shaking so badly I couldn’t sit down and I spent the next 48 hours pacing the house. On Monday, I rang the specialist. He was away but his partner instructed me to come off treatment immediately. I was left feeling confused and afraid. I felt that I’d failed somehow. My experience was put down to a reaction to Interferon but I believe I had a severe panic attack brought on by a lack of support. After I stopped treatment, I was told that there was no cause for worry and that I would live with Hep C for the rest of my life.
Around this time, I met my husband. It was a lovely period in my life. My health was good. We went to the specialist to ask about having children. We were advised that the risk of transmission was low and that there was no reason not to have children. I got pregnant and had a very easy pregnancy. My ALTs were very low during the pregnancy. I naively hoped that my Hep C had cleared. My birth experience was wonderful. The staff at the hospital knew I had Hep C. My obstetrician was very reassuring and careful with the birth. The midwives encouraged me to breastfeed. I was optimistic about the future.
After my son was born, I had a severe flare. My ALTs went up to the 400s and 500s. Nobody could tell me why it was happening. I was incredibly fatigued. I remember going to the supermarket and thinking that the pram was the only thing holding me up. My viral load rocketed up. My specialist started mentioning transmission risks to my son. Before you have your first child the possibility of passing Hep C is theoretical and statistical. Once they are born, the prospect of transmission becomes horrific. Health issues with a child are bad enough, but health issues that you’ve created from irresponsible, risk-taking behaviour is almost beyond bearing.
I went and saw a pediatrician. He gave my son a PCR. I still remember the overwhelming sense of relief when my husband called me to say that my son was negative.
My flare-up settled down after 18 months. Before Thomas’s birth I didn’t think about Hep C much. I could sometimes go months without giving it much thought. After the birth and the subsequent flare-up, I now think about it every day. I hate it. I wish I could go back to just forgetting it was there. But I can’t.
I have told very few people about my hepatitis C. Only my very close friends know anything about what I have been through. I have managed to develop a very satisfying career. One of my core values at work is professionalism. I think to some degree that health is a private issue. Even if I had another health issue, I wouldn’t tell work colleagues, but it is even more so with Hepatitis C. There is little understanding around drug use and I think that people are naturally quite afraid of it. If my workplace knew of my Hepatitis, I really believe it would affect my career negatively. I also don’t want to be judged by my behaviour of 26 years ago.
I recently completed a second round of treatment. I kept working two days a week during treatment. A couple of colleagues knew that I was undergoing a medical treatment but I didn’t tell them what it was for. If I had needed flexibility I would have been given it, but I mainly just soldiered on.
Do I fear discrimination? Absolutely. I think it is natural for people to judge and make assumptions about you. If work thought I had a serious illness that might affect my performance, I believe it would restrict my opportunities. I have a child to support and a mortgage. I’m trying to balance looking after my health in the present with ensuring that my career is protected so we don’t live below the poverty line in the future. That’s my major concern at the moment.
Unlike some people with Hepatitis C, I get an amazing amount of support from my partner. He is an exceptional person. Without the Hep C I think I would have married a completely different person, I chose someone who was so accepting. There are pluses to everything.
After the flare after my son’s birth settled, I just wanted to get rid of it of Hep C. I had had a gutful of it but was nervous about trying treatment again. I sourced a new specialist who was an amazing support to me. Before going on treatment, he referred me to a psychiatrist for anti-depressants to stem any possible panic attacks. Ironically, the only symptoms I didn’t have were anxiety and depression!
I found an online support group – Hep C Australasia. It was an incredible experience. Before then I had been isolated and introverted with my illness. The website brought together an amazing community of people with Hepatitis and gave us a forum to discuss treatment, discrimination, fears, successes, gardens, kids, dogs and anything else you can think of. These people shared my treatment journey from the first injection through the subsequent months. Treatment was a vastly different experience this time around. I had amazing support mechanisms in place; I was much less afraid. I can honestly say, it was a very positive experience and I am very grateful to the people who shared the journey with me.
My specialist deserves a medal for getting me through treatment. He didn’t sit on the other side of the desk and dictate to me. He was a partner with me in the decisions about my health. I think partnering with medical practitioners when you have a chronic illness is a critical step in self-management. I am in my 40s now and have the confidence to drive decisions about my health. It comes from working in a career where you lead projects and use your initiative. I would like to see people with a chronic illness getting support or training in how to partner with their medical practitioners. I think the culture of medicine doesn’t naturally encourage the partnership model and therefore patients need to be encouraged to actively engage in this process.
You can be emotionally volatile on treatment. One of the symptoms is irritability. On the website, we jokingly refer to it as Riba Rage. It is critical that anyone going on to treatment is given information about support networks. A treatment that is as grueling and lengthy as combination treatment requires ongoing support from a range of sources – not just the clinics or specialists. Councils can refer people to great resources from advisers on health and nutrition, to the online support network, to support groups in local and regional areas. People shouldn’t have to go through it alone.
During the first 6 months of treatment, I had significant side effects, but managed well. After 6 months, I was shattered. I dragged myself through each day. At one point I was on over 90 tablets a week and only 35 of those were Ribavirin. The rest were to manage the side effects. I had so many different side effects that I could write a manual on it. In the end, I got tinnitus and decided with my specialist to finish early at around 40 weeks. It is not a common symptom but it does happen. I remember thinking that I didn’t care anymore. I was just so exhausted.
I was PCR negative at 12 weeks and everyone was confident that I was going to clear. There was new research saying that if someone was PCR negative at 4 weeks you would only have to do 24 weeks of treatment instead of 48. My ALTs dropped quickly once I started treatment. I didn’t have a PCR at 4 weeks but I might have been an early responder. I didn’t think I was jeopardizing my chances of clearing by coming off treatment at 9 months. I still don’t believe that my early finish was the reason for my relapse.
I was sick after I stopped treatment for about three weeks. It was a real shock. It was almost like I was withdrawing. I ached all over and felt miserable. Then, all of a sudden, I started to feel great. I vividly remember standing at the sink two months after I finished and saying to my husband how great I felt. I thought ‘if this is how other people feel, what a fantastic way to live your life’. We both thought I was going to clear.
About two weeks later, we went into Federation Square for the day. I had noticed a stitch in my side in the morning. It wasn’t for an hour or two that I realized that the pain was in my liver. I went and got a test the next day. My ALTs were up. It was all over red rover. I’d relapsed.
I wasn’t mentally prepared for a relapse. Everybody thought I was going to clear. At first I was terrified. What did this mean for my future and the future of my family? Then I was furious … at everyone. I was angry at my specialist even though he had done nothing to deserve it. I was angry with everyone who had flippantly said that I would clear. It was a terrible shock and took me many months to recover from.
Before you do treatment all you can think about is starting. When you’re on treatment, all you think of is finishing. But when you relapse, and you are looking at a future with ill health, it is like being reinfected over again.
On the Hep C Australasia site (online support group) the only people who understood my relapse were the people who had relapsed themselves. People on treatment understandably don’t want to know - it is frightening to them. People who haven’t been on treatment still have the hope that future treatment will clear them.
I got fantastic support from the website whilst I was on treatment, but once I relapsed I turned away from the site for many months. It is easy to discuss being on treatment and Hepatitis C when you might get rid of it. But I couldn’t face being reminded of my Hepatitis after my relapse. I wanted to ignore it and get on with my life.
Recently, people have asked me if I would do treatment again. I would do treatment again in a blink of an eye. Treatment is a relatively short time in your life. It is absolutely worth the effort if there is a chance of clearing. But could I go through a relapse again? That’s a different story. The hardest thing about the relapse was the loss of hope. I’m not sure I could take another blow like that.
Like all relapsers and non-responders, my sight is on the new treatment regimes with the protease inhibitors and polymerease. My specialist will keep me informed about the trials, but I am more emotionally fragile now. I don’t have the same hopefulness. I know that there is a lot to lose if the next round of treatment fails. I would say now that I am cautiously interested in treatment rather than naively optimistic.
After the relapse, I started researching self-management. I have incorporated a lot of the key platforms of self-management into my life: good diet; exercise; rest; relaxation; focusing on the day instead of the future, etc. I am forcing myself to slow down and I resent it. Life is so precious and has so much to offer to someone living in the Lucky Country. I resent not being able to work more hours, sit on committees, travel, study at night, bushwalk. I want to feel a part of things and I hate feeling different. On the other hand, having Hepatitis C has forced me to look at what is valuable in my life.
It’s easy to be simplistic and say if I didn’t have my Hep C that my life would be perfect although I am sure that’s not the case. How do I feel about it? Hepatitis C is like a dysfunctional family member that you have to make peace with when you would rather run screaming for the hills. I hate Hepatitis but it is a part of me – for better or worse.
I was thinking recently about whether I would stop being a “Hepper” (that’s what we call ourselves) if I cleared. And I knew I wouldn’t. Hepatitis came from some fundamentally defining moments in my life and continues to take me in unexpected directions. It has shaped me as a person. I will always be a Hepper because of everything it has brought to my life - both good and bad.
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Anna's Story
My name is Anna. I live in western Sydney. I am 62 years old. I work in a legal firm.
I started injecting drugs in about 1969. At first it was amphetamines, then anything I could crush up and inject. I've injected mescaline and LSD, tranquilisers and speed. In my stupidity, I thought that if you couldn't shoot up a drug it wasn't worth doing. I was living in Canada at the time.
When I came back to Australia, it wasn't very long before I found my drug of choice - heroin. I first went onto a Methadone program in 1975, but Methadone was always considered a backup for withdrawal symptoms for times of unavailability (for whatever reason) of heroin.
I spent the next 19 years as a junkie. I had a co-dependent man who was extremely violent, and he made me do the most horrendous things to obtain junk. Finally, in 1994, I had had enough. I did not want to be a middle aged heroin addict. I decided to leave my man and go to Sydney. This turned out to be very fortuitous. I believe that to quit any addiction, you need to get away, make new friends, find a new drug-free lover and run from your junkie environment.
I moved from Melbourne to Sydney in 1994. I was quite ill for a couple of months but still found a job and attempted to shake off my junkie mentality. I had a little help with Codral Forte, and I drank quite a bit of alcohol.
In 1994 I was diagnosed with psoriasis. I went to a doctor who suggested I take Methotrexate to control my psoriasis. Methotrexate can have a detrimental affect on the liver and its use needs to be supervised. I had a blood test which showed I had hep C. I wasn't concerned at that stage. I didn't take the diagnosis seriously. I continued to live my life "to the fullest". In time, the junkie mentality faded. I was still drinking nearly every day.
I continued to take Methotrexate unsupervised for a long time. In 2003 I found a GP I liked and discovered that I had hypertension which required blood pressure medication. I had regular blood tests. My liver functions were rising. I looked into hep C treatment. In 2006 I went to a gastroenterologist and received advice about treatment. I didn't like the sound of it. I was afraid of the liver biopsy.
In 2007 I stopped drinking completely and discontinued taking Methotrexate. My liver functions were still rising and my GP said I should seriously consider Interferon treatment. I went to a Sydney Hospital where I had an ultrasound, a CT scan and a biopsy. My fear of having a biopsy was completely unfounded as the procedure was painless.
With a positive attitude, I started the interferon/ribavirin treatment in January 2008. I had heard and read some pretty negative things about it, but was adamant that the drugs would not affect me and that I would be able to fly through the 48 weeks of treatment.
Unfortunately, that was not to be the case. Within six weeks after starting treatment I was anaemic. As a consequence, I was prescribed "Epo" to boost my red blood cells which I had to inject twice per week. The “Epo” did give me a little more energy.
Prior to the treatment I was a strong advocate for exercise. I walked five days a week for an hour during my lunch period. Sometimes, when I was feeling weak, I had to force myself to exercise. Then the horror of the treatment really began. One Friday evening, seven weeks or so into the treatment after walking during lunch that day, I started to develop cramps in my feet and lower legs. They were excruciating, and I was hopping around the bathroom screaming with pain. The cramps that night lasted about five minutes. I did try and walk again but the same thing happened. I discontinued exercise of any description.
The cramps got worse and worse. I'd be at my keyboard at work and my hands would cramp. Also several times at work, I would drop to my knees crying in agony. I informed the hospital and was told this was an unusual side effect. I was instructed to drink plenty of water and also to drink Gatorade and tonic water. None of these helped, and I suffered a great deal. Every day I would get cramps in my feet, lower legs, the inside of my thighs and hands with no relief in sight. Eventually, the hospital gave me a prescription for 300mg quinine sulphate. I took one tablet daily. They did ease the cramps but made my hands shake and my heart flutter. One night, even though I was taking the quinine, I had cramps in my legs for nine hours straight. It was a terrible night and the memory of it will stay with me forever.
I also had severe pain in my left shoulder and upper back. My GP sent me to a physiotherapist but it didn't help. I was convinced it was tendonitis from my years of typing. I purchased several creams and lotions for this condition but they offered only temporary relief. Once again, the hospital had no answer for this. Another unusual side effect I was told, but wait, there's more . . .
The right side of my face started to swell,, also my right ankle. The swelling in my ankle made it difficult to do anything. Sometimes in the evening, after a day of walking around, my whole body would ache. It was particularly bad in the mornings. I could feel my eyes were swollen when I woke up. The hospital had no answers for me regarding the swelling. My GP told me to take time off work and elevate my leg, which I did, to no effect. Eventually, my GP told me that one of my blood pressure medications, Felodur, could be causing the swelling. I stopped taking them and the swelling went down. The hospital said that Interferon had nothing to do with this problem though I had been taking Felodur for years and had never had an adverse reaction before.
I was prescribed Panadeine Forte for pain. Unfortunately, codeine makes me itch. I couldn't take the tablets as I'd scratch my psoriasis and make it worse. The treatment also had a severely detrimental effect on my psoriasis though not at first, but as I got into the treatment, I got psoriasis in places where I had never had it before. I knew that Interferon would affect psoriasis. It broke out all over my back and I would be unbelievably itchy 24 hours a day. I tried everything to ease the itching. The hospital gave me antihistamines but they were of little help.
After 24 weeks I stopped the treatment. It wasn't working. I still have hep C.
Now my psoriasis is the worst it's ever been. My shoulder has stopped aching and I no longer get cramps. My right leg still hurts when I exercise. It has taken four months for me to recover, but I feel that I will never be as well as I was before the treatment.
Having said all of the above, I do not wish to put anyone off trying to get rid of their hep C with interferon/ribavirin. I should have stopped drinking years earlier and tried the treatment. I'm sure I would have had more success than I did.
I was willing to go to week 48 if I was responding to treatment.
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