Contents
We welcome contributions from Council members and the general public. Views expressed in this newsletter are not necessarily those of the Hepatitis C Council of S.A. Inc. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist.
Council Update
Membership & GST
From July 1st GST will apply to membership of the Hepatitis C Council of SA Inc. This means all memberships will increase by 10%. From July 1st membership fees will be
Non-waged membership: $5.50
Waged membership: $16.50
Organisational membership: $55
(GST inclusive)
You can apply for zero-cost membership if you are experiencing financial difficulty.
Donations do not attract GST.
Vale Colin
On a sad note we regret to inform you of the sudden and untimely passing of Colin Harris. Colin was the first paid employee of the Hepatitis C Council of SA Inc. Before he began as Project Officer HCCSA was a homegrown amateur operation working from a dedicated volunteer’s private house. Colin enjoyed relating the story of his first day at HCCSA. The President took him to a room in Joslin the size of an average bathroom, with a cardboard box chock full of files, papers and folders, a phone, a computer and a fax and said “This is the Hep C Council; go for it”. In the year or so he was here, HCCSA formed the foundations of the professional operation it is today. Despite his heavy work load Colin was never too busy to offer encouragement and a caring, sympathetic ear to those who needed it. He made an impact on many people with his supportive and thoughtful counsel.
Colin is survived by his partner Jill and his 13 year old son Matt. He will be missed by the many whose lives he touched.
Rural Worker commences at Hepatitis C Council
We would like to welcome William Donohue who has joined us as Rural Education and Support Worker at the Hepatitis C Council. William is available for group or individual education sessions in country areas. He can also assist in developing rural support groups. William is a medical doctor who has worked on methadone programs, in prisons, in community health and general practice.
Rural callers can contact William through the Hepatitis C Council free call number 1800 021133 (Rural workers and organisations can call on 08 8362 8443).
Dr Robina Creaser has resigned from her role on the Management Committee of the Council
Staff, volunteers and fellow management committee members at the Council would like to thank Robina for the enormous contribution she has made to our organisation over the years. Robina has tenaciously championed the fight for greater knowledge about hepatitis C and the impact it has on people’s lives. She also has significantly contributed to the education of health professionals. While we are farewelling Robina from her ‘official’ role at the Council, she has assured us that she will still continue to be available in her less formal role ‘at the end of a phone or e-mail’ to answer many more of our more technical medical questions.
From all of us at the Council, thank you Robina.
Hepatitis C Council of WA Inc launches its new-look, up graded website
More than 50 pages with contributions from infected and affected persons and from local health professionals are now available at the Western Australia Hepatitis C Council’s website. To access the website click on the link from our Links page.
Noarlunga Liver Clinic
A hepatitis C clinic has been set up at Noarlunga Hospital with the aim of providing a management service for patients in the southern area. The clinic will be run by Dr Darren Mounkley FRACP on behalf of the liver clinic at Flinders Medical Centre (FMC). The clinic will be held once a month initially, but should demand increase, up to weekly. Referrals need to be made through your local GP and faxed to Dr Mounkley’s private rooms on 8382 1380 or via Gastroenterology at FMC on 8204 3943. You will then be contacted regarding your appointment time.
News in Brief
Peg-Intron™ Vs Intron A™
Results of a Phase III clinical trial to access the safety and the efficacy of Peg-Intron™ (peg-interferon alpha-2b) and Intron A™ (interferon alpha 2b, recombinant) were presented at the 35th Annual Meeting of the European Association for the Study of the Liver (EASL). A total of 1,219 HCV positive adults with elevated liver enzymes and compensated liver disease who had not been previously treated (treatment naïve) were enrolled in the trial. Patients were randomised to receive one of three dose regimes of Peg-Intron (0.5, 1.0,1.5 &g/kg body weight) once a week or Intron A (3 MIU) three times a week for a treatment period of 48 weeks and were followed up 24 weeks after treatment end. Sustained response was defined as a loss of detectable HCV RNA 24 weeks after the end of treatment.
“Peg-Intron at all three doses studied showed higher rates of sustained response than Intron A and was just as well tolerated,” said Christian Trepo, MD., PH.D., Director, Hepatitis Research Unit, Hopitsl Hotel Dieu, Service d’Hepatologie, Lyon, France, who presented the data. “Consistent with previous studies, the rates of sustained virologic response achieved in this study were greatly influenced by genotype, and ranged from 11% for patients with genotype 1 (the most predominant genotype world wide and the most difficult to treat), to 49% for patients with genotype 2 or 3, compared to 6% to 28% for Intron A,” Trepo said. The majority of patients (70%) had genotype 1, and 74% had a high viral load (>2 million copies per ml).
Adverse Effects (AEs) for all doses of Peg-Intron were similar to those for Intron A. Most AEs were mild to moderate and able to be controlled with dose adjustment. Discontinuation of therapy due to AEs was similar for all patient groups (6-11%). Dose reductions were similar for Intron A and Peg-Intron 0.5 &g/kg and higher for Peg – Intron 1.0 and 1.5 &g/kg (6%, 9%, 14% and 19% respectively). The most common side effects occurring with Peg-Intron were flu-like symptoms, such as headache, fatigue, myalgia and fever, which appeared to decrease in severity as treatment continued.
Adapted from Schering Plough Corp. press release May 1 2000. View the original press release from the Schering-Plough home page at http://www.sch-plough.com/ just click on news, then click on research news 2000, then select the PR to view.
PEG-INTRON ™ alone or with REBATOL™
Phase II results: A total of 72 patients with HCV and compensated liver disease were enrolled to randomly receive either Peg Intron (peg-interferon) (dose range 0.35, 0.7, or 1.4 ug/kg) once a week alone or in combination with daily Rebetol (ribavirin) (600, 800 or 1,000-1,200mg) for 24 weeks, with 24 weeks of follow up. At follow up patients treated with Peg-Intron at doses 0.35, 0.7, or 1.4 ug/kg plus Rebatol had sustained responses of 17%, 53%, and 60% respectively, compared to 0%, 44%, and 42% for the same doses of Peg-Intron alone. In this study 44% of patients had genotype 1, and 58% had a viral load >2 million copies/ml. The tolerance profile of Peg-Intron plus Rebetol was comparable to the known tolerance profile of Intron A plus Rebetol.
Abridged press release from Enzon Inc May 1 2000. This press release can be viewed in full on the internet at http://www.enzon.com/PR5100.html
HCV Infection in Egypt
Researchers C Frank et al have published convincing data explaining the unusually high rate of HCV infection in Egypt (15%–20%). A major risk factor for HCV transmission that sets Egypt apart from other countries is a mass treatment program for schistosomiasis, a disease of high prevalence in Egypt that is caused by a parasite. The intravenous treatment was initiated 50 years ago and discontinued in the 80s in favour of an oral medication. The study showed the incidence of HCV infection decreased dramatically in the population too young to have received the intravenous treatment. Researchers reported the high risk of transmission during the inadequate sterilization process of reusable syringes.
The Lancet, 11 March 00. You can subscribe free to The Lancet through their website
Ribozyme research continues
Ribozyme Pharmaceuticals, Inc. (RPI) reported today the completion of single dose safety trials of the anti-hepatitis C ribozyme, LY 466700. The study was conducted by development partner Eli Lilly and Company, and found that the drug appeared to be well tolerated in the first cohort of normal volunteers. Administration of LY466700 to chronic hepatitis C patients has now been initiated in a clinical trial designed to study safety and to assess the effect of the compound on HCV viral RNA levels following a 28 day dose-response regimen. The drug will be administered by a daily subcutaneous injection to approximately 20 patients.
Extract from HepNet press releases at http://www.hepnet.com/
US Veterans
In response to growing evidence that U.S. veterans are at increased risk for hepatitis C, the American Liver Foundation, in conjunction with several Veterans Service Organizations, will conduct free hepatitis C screenings for all U.S. veterans in eight cities across the country. A study conducted by the Veterans Health Administration (VHA), and involving 26,000 veterans shows that up to 10 percent of all veterans in the VHA system tested positive for hepatitis C, which is four to five times greater than the infection rate realized among the general population. In this study, veterans who served in Vietnam accounted for more than 60 percent of all positive test results. It also has been reported that more than half of all liver transplant patients within the VHA system are infected with the hepatitis C virus (HCV). The Katonah Republican said the ``The Hudson Valley VA network, known as VISNA 3, has the highest incidence of hepatitis C in the nation. According to the VA's own numbers, of the 158,972 veterans currently receiving care at our local VA facilities, only 14,919 have been tested so far. Of these, 28%, 4,235 individuals have tested positive for hepatitis C.'' The increased incidence of hepatitis C among veterans could be the result of exposure to blood-borne HCV through blood transfusions received during or after combat-related surgical care or in the care of others in the battlefield.
Abridged Press release from American Liver Foundation.
Interferon
Is the treatment good enough? more about INTERFERON
Those of us who attended the Victorian Hepatitis C Council’s AGM in Melbourne on November 25th were gratified to note that keynote speaker Stephen Locarnini (Divisional Head of Molecular Research & Development, Victorian Infectious Diseases Reference Laboratory) has evidently been listening to our pleas for better medical treatment for people with hepatitis C. As part of his comprehensive and interesting presentation to the AGM, Stephen made 2 very important points which ought to give pause to medical practioners who are eagerly offering Interferon based treatments to hepatitis C positive people.
Point #1: Stephen indicated that if he himself had hepatitis C and was otherwise well and was considering therapy, he then would choose “to wait” until better treatments became available unless his liver disease was progressing. This comment reflects both Stephen’s informed optimism that better treatments will become available within the next few years and also his acknowledgement that the side-effects of Rebetron (combination Interferon & Ribavirin) can be serious whereas the odds of sustained response are not high unless one has genotype 2 or 3.
Point #2: Stephen commented on the practice of prescribing Interferon in such a way that the anti-viral concentration waxes and wanes (intermittently dropping below the level that is effective against the virus) saying that “in therapuetics…this is the worst thing to do”.
So what does this latter point mean? In medicine for some time now it has been considered a basic rule of thumb to use antibiotic and anti-viral drugs in such a way that there is a constantly active and unremitting concentration of the drug in the blood (or affected organ) during the course of the treatment. The point of this rule is to ensure that the germ (virus or bacteria) does not have a chance to rally and become stronger against the drug. It seems that (except for the Pegylated version) Interferon is currently not being used in this way against the hepatitis C virus. While this author cannot vouch for the benefits or otherwise of the new Pegylated Interferon (currently only available in experimental trials) it does at least have the potential to be used in a way which meets this very basic criteria of sustaining a constant therapuetic concentration of anti-viral throughout the treatment.
We are grateful to Stephen for his frank observations on these very important matters, and confident that the International Conference on Viral Hepatitis Treatments (currently underway in Hawaii) will join Stephen in addressing these questions in the interests of better outcomes for people with hepatitis C (and B?). Watch this space.
Meanwhile back on the Interferon treadmill, tips for punters who are contemplating treatment, some questions to ask your doctor beforehand.
- How badly is my liver damaged right now?
- Is the damage progressing rapidly?
- Is treatment urgently necessary or can I afford to wait for better treatment?
- What is the genotype of my Hep C?
- Which treatment is likely to be successful against my type of Hep C virus?
- What are the odds exactly?
- Does the treatment you recommend keep up a constant, unremitting and active concentration of the medicine in my blood throughout the whole course? If not why not?
- What are the side effects which might affect my ability to work and function personally as well as on my physical and psychological health?
- If you were me Doc would you take this treatment?
For further assistance in making these difficult decisions call the Council to get all the written info on treatments. Good luck punters!!
Written by Mary Burns, Hepatitis C Helpline Coordinator ( Melbourne ,Victoria). With thanks to Suzanne O Callaghan for moral support, lit search and copies of background reading. Thanks also to Rhonda Mc Caw and Stephen Locarnini for checking final draft.
From Doug’s Desk
I don’t go to the Council very often these days but when I do I can’t help notice the almost feverish excitement of both the staff and volunteers. I suppose it’s to be expected as for so many years nothing much happened now things are happening at a pace I can no longer keep track of. About a month ago Robina resigned from the Council (see page 4) and while I’m sure many people are sad to see her go, for me personally this was not a loss, more a symbol of the end of a long era. I am sure she is glad to have a rest, she has been doing this for a long time now and it’s not the kind of thing you do forever. I know she is happy with the way the Council is right now. In any case Robina will continue to work on hepatitis C issues behind the scenes as she has always done. I shall wait until the end of this year to thank her for the many things she has done then it will be my turn for a rest and the pursuit of personal goals.
A few months ago Kerry and I had discussions with some people from Flinders Medical Centre regarding my complaint about liver biopsy procedures. I do not want to pre-empt those discussions, as they will be ongoing - although I will not personally be involved. What I can say is that the discussions we had were positive. I was impressed by the good will and sincerity of the people we spoke to and despite my own particular history with that hospital I genuinely look forward to a new era of cooperation between them and the Council.
Just a brief mention that there are moves afoot by both State and Commonwealth Governments to introduce a national health database. The AMA’s response seems to be that while there are many advantages in introducing such a system they are seriously worried about security issues (http://www.health.gov.au/healthonline/action.htm) - they are not the only ones.
Hats off to Greg Dore for his article on sexual transmission in the most recent publication of The NSW Hep Review (Edition 29, page 28). I hope this will be the definitive article on sexual transmission at least until we get a lot more good quality research. The article at least should put paid to some of the recent controversy over transmission rates and re-establish 2% as the most reliable and acceptable for the time being. If you are concerned about sexual transmission I recommend you read it. It is very well written and funny too. His last line is a cracker: “With regard to sexual contact with casual partners, my advice would be that condom use is sensible, more for protection from other truly sexually transmissible infections”. I believe Dr Russell Waddell, from the STD clinic gave a very good presentation on sexual transmission at the last support group - I’m sorry I missed it, haven’t been able to get to any this year as it clashes with another commitment.
A few weeks ago I was talking to someone about the need to treat symptoms in hepatitis C and was surprised when they asked me to provide them with a rationale. I replied “I would not have thought a rationale was required as the symptoms of an illness are a part of that illness and if the illness cannot be successfully treated then some attempt should be made to treat the symptoms”. I could see they were not impressed by my simplistic answer and so I went home to think more about it. A few days later with a bit of help from others the following arguments evolved.
Duty of Care - This argument is similar to the one I gave the questioner “symptoms are a part of the ongoing clinical management of the treatment of any disease”.
Economic - Unless the price of Interferon drops in the future no government in the world will be able to afford treatment for everyone - I doubt if many third world countries at present can afford to buy Interferon. Given this situation it would seem logical that treating people for their most persistent and debilitating symptoms would reduce their burden of illness and allow them to lead more normal lives.
Statistical - Approximately 52% of Australians (Kaba, 1998) have genotype 1, the remainder have mostly genotypes 3 (32%), 2 (9.3%), 4 (5.5%) and 6 (1.7%). The rates of sustained remission on combination treatment for the main four genotypes which account for most of our population are Type 1 & 4, (33%) and Type 2 & 3, (64%) (Poynard, 1998). The prospects then for Type 1 and 4 which together make up the largest percentage of the hepatitis C population in Australia are much poorer than that for those who have genotypes 2 or 3 with only one third of people with Types 1 & 4 successfully clearing the virus, the remaining two thirds will not have cleared the virus and will have experienced little or no resolution of symptoms if they are symptomatic. Most of these people will have to be retreated, with poorer prospects at re-treatment. What this means is that many people who are symptomatic are going to have to put up with their symptoms for a long time unless we start looking at treating them.
Symptoms after Viral Clearance - On a televised broadcast last year on ABC Geoffrey Farrell, and Greg Dore, both stated that symptoms tend to disappear after loss of virus with successful treatment. However neither cited which study or studies this information came from. A literature search failed to come up with any evidence to support their claim.
Non-Acceptance of Treatment - According to (Loveday, Deakin & Neophyton, 1999) there are a significant proportion of Australians who do not want to be treated with interferon - for a variety of reasons. These people may however accept treatment for their symptoms.
Symptoms have been a controversial issue in the hepatitis C literature for many years. In 1994 Desmet, criticised the lack of reporting on symptomatology whilst in 1997 two studies one by Seef and the other by Alter both described the course of hepatitis C as a mainly asymptomatic one unless it progressed to cirrhosis. Although the rate of symptomatology has not been accurately established, one estimate is that it is less than 20% (Hoofnagel, 1997). Despite the small number of studies that have looked at symptoms the majority have shown that they do exist in chronic non-cirrhotic hepatitis C patients. A study undertaken in Northern NSW between 1993 and 1994, found that nearly half the subjects reported fatigue or some other adverse symptom (Sladden, 1998). Of eight studies undertaken on health related quality of life (HRQOL) between 1994 and 1999 (Foster, 1999), all showed a significant decrease in quality of life compared to that of healthy subjects.
In December last year the Australian Family Physician published a special edition entitled “Hepatitis C: A management guide for general practitioners”. Given the title of this edition (which is mostly very good) I certainly would have expected a lot more mention of symptoms with guidelines on treatment, however there is very little mention of symptoms and nothing on their treatment. In chapter six, on chronic hepatitis C by Lin, Barker & Batey, while not containing any information about treatment, devotes one section to symptoms which in my opinion captures an accurate portrayal of symptoms in a few words: “Tiredness (fatigue) and lethargy, often to the point of exhaustion after a normal days work, are very common in patients with hepatitis C. While these symptoms are often worse in those with more advanced liver disease, they can be quite marked in people with minimal evidence of liver damage. The symptom of fatigue is non-specific, but its impact in individuals has to be documented as the basis for change. In particular, many patients will require assistance in claims for unemployment benefit based on the severity (level of incapacity) of their tiredness”.
At present in Australia there are a number of studies recently completed or underway that focus on symptomatology eg. fatigue in Queens-land, depression in NSW, and in South Australia a dental study of symptoms, a quality of life (QOL) study and a study of extra-hepatic manifestations. I doubt if there are many clinicians these days who would accept the “mainly asymptomatic” position. I think that battle has been won, but the legacy has slowed us down. The studies on symptoms I believe should have gone hand in glove with other studies i.e. included in the design even if it were extraneous to the central inquiry of that study but that didn’t happen. So, the position currently is that most people accept that there are symptoms, but up until the present there have been no very large studies that have exhaustively categorised them, rank ordered them in terms of commonality or looked at the frequency, duration, or severity and only a very few studies have looked at the treatment of symptoms.
What Research still has to tell us about symptoms: Leaving aside aetiology and extra hepatic manifestations (the latter are considered rare but may turn out to have some connection with common symptoms), the following is a list of questions not adequately answered by previous research.
What are the most common symptoms of hepatitis C?
What are the rates of these symptoms, their duration, frequency and severity?
What existing treatments have been shown to reduce symptoms?
Are there any differences in symptoms between genotypes?
What are people using to treat their own symptoms and do they work?
Do any of the alternative treatments work?
What do we know about the synergistic effects of multiple symptoms?
What effect does loss of virus have on symptoms at different stages of liver disease?
In a few weeks time the Council will be running a telephone survey of symptoms. I understand that people will be notified by letter about this nearer the time. If you are symptomatic I would encourage you to respond - this will be the first survey of symptoms in this State. Until next issue I will leave you to ponder the final words of Raymond Koff (1999) on symptoms “How does persistent hepatitis C virus infection impair ones sense of well being? Is it simply the presence of viremia, or is it other pathophysiological events occurring as a result of the infection, such as the release of cytokines or the induction of specific noxious hepatic proteins or other materials? What is the role of hepatocyte necrosis or inflammation in this process? Is there some sort of neuropsychological impairment as a consequence of the disease that affects patient’s perceptions of health? Answers to these questions will permit a better understanding of the pathogenesis of chronic hepatitis C and may lead to the development of specific therapies directed to improving our patients’ sense of well-being eradicating the infection, and restoring health”.
n.b. Please write to the Council if you want references for anything I have mentioned.
Doug Mellors
AusHep 8 Diary
Heidi continues to share her experience of combination therapy.
I’ve been through some changes since the last instalment on the diaries. The emotional/mental effects of the interferon became so much that I felt unable to cope with the normal everyday things in life. Indeed I am amazed with what I do manage most of the time but right at this moment I felt like I was losing my mind and I knew I had to do something about it.
I was getting bad dreams that started leaving me feeling quite disturbed well into the next day. When I got to a point that all I could do was sit, staring at the wall crying I decided to see the doctor to find out what my options were. I was given three choices, start taking anti-depressants, halve my dose of interferon or stopping the treatment all together. I didn’t want to take antidepressants as the mental effects of the interferon were already affecting my work and I didn’t need anything that would further dull my mind but I wasn’t sure if I wanted to stop the treatment, after all I had come so far already. I decided to try halving the dose to see if it improved.
Well it worked, sort of. The depression hasn’t gone completely and it still gets worse at certain times of the month but it’s manageable. I can still function in the real world, do what I have to for work and even enjoy a bit of social activity. The hardest part I think was feeling unable to fulfil my existing commitments and not being able to get enjoyment from anything, even the things that I know I love. It's awful not being able to enjoy life even when you know you should be having a great time.
After this experience I will view depression in a very different light. When I started on the treatment I thought I had some idea what depression was about but the uncontrollable emotional effects of interferon are so debilitating.
The reduced dose has brought a new perspective. It has been about a month since I cut back and I am feeling a bit more confident that I can make it through to the end. My liver function has not been affected by the reduced dose either, still getting ALTs around 12 and physically feel OK. There’s only 3 months to go now so by the next instalment I should be at the end and there’ll be no room for depression then.
Heidi
Mail Bag
“You Don’t Need A Weather Man To Know Which Way The Wind Blows”
When diagnosed Hep C positive in 1993, it’s fair to say I was generally apathetic to the situation. The diagnosis merely confirmed my expectation. I’d been using narcotics, psychotropics and cocaine with decided abandon for a long time, when it was a different scene with plenty of access. In due course my choice of poison resolved to heroin.
It was discovered I had Hep B in 1974 and subsequently spent a few weeks laid out in an infectious diseases unit of a hospital. For the ensuing decade living with Hep B antibodies bore no consequence. In fact, as bizarre it seems, doctors effectively informed me that my antibody status (as with many viral infections), would immunise me against further Hep B complications. Hence, I naturally assumed catching the Hep B virus in the first place was a twist of good fortune.
In 1987 I was surprised when a doctor told me I was no longer Hep B antibody positive and that if I wished to regain my immunity I’d have to have a series of three Hep B antibody injections. The upshot of all this doubtlessly explains my attitude upon the Hep C diagnosis in 1993. Apathy!
By deduction, I mistakenly believed that as Hep B had duly “run its course“, Hep C would likewise recede. As Hep B antibodies were considered to be a good thing, I naturally thought Hep C antibodies would also be a good thing and offer me protection and immunity. Lulled by a false sense of security, I subsequently neglected to seek sufficient professional advice.
It’s easy to “shoot the messenger” but all things being equal, I was never the less forced to acknowledge a certain cynicism arising as my state of health regressed to cirrhosis. I attach a degree of culpability to my (then) GP, who failed to inform me of constructive information concerning the insidious and potentially lethal nature of this virus for some people. Other than to note the irreversible fall in my blood platelet count (clotting agent), through ensuing blood tests over six years, he did nothing else to help my prognosis. I knew very little about my condition and my GP certainly didn’t provide me with any additional information.
Despite being a long-term recipient of methadone (now on a reduction regime) over many years and in direct contact with a wide range of health professionals i.e. doctors, nurses, social workers and counsellors, I still knew nothing about hepatitis C and its potential impact. I had a good working knowledge on safe injecting practices but found out nothing about what was happening to me physically as a direct result of the hepatitis C virus.
My observations lead me to conclude that within the hepatitis C positive population in general, most people remain quite ignorant of the numerous symptoms and serious consequences that this virus can have for some people. Had it not been for the happy accident of my visiting an old friend who works at the Hepatitis C Council, it’s probable I’d still be unaware of the extent of my deterioration.
Following his advice, I consulted a new GP and was referred to a specialist. This specialist informed me that Hep C had damaged my liver to the degree of cirrhosis. I was totally unaware that cirrhosis was even in the “ball park”. In my instance, unless my assessment was incorrect, I perceived the particular specialist concerned to be perhaps a trifle unsympathetic and definitely uninformative, the disease being self-inflicted. After the diagnosis, the sole cold comfort tendered was the pragmatically stark, “The light at the end of the tunnel is a liver transplant”. Hell, I didn’t know I was in a tunnel. Then I made my way home feeling greater empathy for people with HIV than ever envisaged.
By attending the Hepatitis C Council’s support group and availing myself to a wealth of knowledge, I acquired both anecdotal and written information on hepatitis C that was easy to understand and personally very useful. It was at this point that I realised how poorly informed most of the health professionals that I’d had contact with over the last 7 years were. If they did know anything they certainly hadn’t shared it with me.
During the initial two months post cirrhosis diagnosis I immersed myself in learning as much about the disease as possible. Although there is a lot of truth in the adage, "knowledge is power” I became saturated with too much information. Attempting to turn my health around, I overwhelmed my capacitors to the detriment of my wellbeing.
To quote Mathew Dolan, author of “The Hepatitis C Handbook” (colloquially known as “the bible”), “the subject is both fascinating and frightening”. Despite the brave face I tried to deceive even myself with, it was my wife who brought me to realisation of the fact that I wasn’t coping. I proved your regular Joe Schmuk, as fragile, confused and deluded as the best of them.
Dylan penned that much quoted line, “You Don’t Need a Weatherman to Know Which Way the Wind Blows”. At forty-seven, a small framed male pushing 5’6”, my average weight fluctuated between 10.5 to 11 stone. Six months ago I weighed well into 11 stone. Five months later I weighed only 8.5 stone. I’m aware that cirrhosis in its advanced stage leads to marked atrophy. But I believe my excessive loss was due to a belligerent fanaticism to radically alter my diet to be totally “cirrhosis compatible”. No prisoners taken! Thankfully, at last I conceded to the wisdom of my wife and sought consultation with a clinical dietician. She confirmed my wife’s assertion. Cease drastic change in diet and return essentially to usual eating patterns, gradually reducing what isn’t conducive, and supplement with food compatible, until in the fullness of time the good supplants the bad. Not in the one fell swoop! My weight is now on the increase and I am feeling happy.
John
MY STORY AND HEP C
Hi I am a 54 year old mother of 4, a grandmother of 8 and a great grandmother of 1 and I would like to share my story with you of how I came to terms with living with the hepatitis C virus. By sharing my story I hope that you may get something out of it that may help you in one way or another.
Back in September of 1997 my husband and I were living in Western Australia. I loved it there and I met some very lovely spiritual friends, who helped me to look differently at myself. This experience helped me to grow in knowledge and with wisdom and it also helped me to turn my negatives into positives. Despite my positive experiences in WA my husband never felt settled there and he longed to return to South Australia.
A few months before we left Perth my husband and I had a casual job managing a country hotel. We worked very long hours and when it came to bedtime I found it very hard to try and wind down. I was informed by one of the customers to drink a couple of small glasses of liqueur and milk as this would help me settle before going to sleep. I normally do not drink alcohol, but I did try this and it worked. With this positive result I continued to have two of these drinks at night before bed.
After a while I started experiencing pain in the right side of my abdomen. I felt really run down, and not well in myself so we decided to leave and go back down to Perth again for a while. When I went to see my doctor and told him how I was feeling he referred me on to a specialist who sent me for X-rays and a number of different tests. He said the tests were for HIV/AIDS, etc, and I asked why I had never had to have these tests before when I had to go into hospital. His reply was that it was just a precaution now, as people had come over here from the eastern states and brought diseases into Perth hospitals. There I was from the eastern states totally unaware of what this man was talking about.
I never thought any more of this and off I went to have my tests (in no way was I aware of what was to be the outcome). Two weeks later it was time for me to go back to see the specialist again. My name was called out and in I went. The specialist told me to take a seat, he looked at my results and then he told the most devastating news of my life.
He said “you have the hepatitis C virus”
My response was that I didn’t know anything about Hepatitis C and I didn’t know if it was the same as, or something different to HIV. I had never heard of hepatitis C before. Then I asked how the hell did I get ‘it’, not knowing what to say next and trying so desperately hard to hold in my emotions. Then he blurted out that it was probably from the blood transfusion that I’d had back in 1979 when I’d had a hysterectomy. He then went on to say that I had scarring of the liver, and it would probably turn into cirrhosis and then could turn into cancer. Well I don’t think I need to say how I felt right at that moment. I felt like I had just been given my death sentence. I just wanted to get out of there so fast.
He then went on to say that he had to report me to the Health Department, and he would send a report back to my doctor, for him to refer me on to the Gastroenterology clinic at Perth hospital for interferon treatment and to have a liver biopsy. He still gave me no explanation of what the hepatitis C virus was. No empathy at all, he made me feel like a leper. I was just so pleased to get out of there. It was the fastest I had ever left any doctor’s surgery in my life. When I left the surgery and got into my car, I just let my emotions go. I cried all the way home, with all sorts of things going through my head. Things like, how long have I got left to live? Am I going to die? Have I given this to my husband, or my children?
When I arrived home my husband asked me what was the matter and I replied “Nothing”. I was too scared to tell him at first, I didn’t know how to tell him, not knowing how he would react. It was my fear, and I was still in a state of shock.
Then out I came with it “He told me I have hepatitis C and that I probably got it when I had the blood transfusion back in 1979”. I did not know what hepatitis C was, I was just so confused. All these thoughts were going through my head. Had I given it to other people because I have been in hospital and had operations?
Then I rang my daughter and my three sons in Adelaide and told them. I wasn’t able to think straight because of the upset it might cause them. But they were very supportive and kept saying nothing is going to happen to you mum. They have never treated me any differently.
Then something came over me and I decided to go to my room and I rang Life Line. I was on the line for quite a while. The person at the other end of the line was my listening ear, something I needed greatly at that time and they were great. I started to settle down a bit and I was able to start to think a bit more clearly.
Then all of a sudden (while still on the line) I remembered the words that were given to me before by different clairvoyants. I had been told on a number of occasions that I would live well into my eighties. Believe me I needed to remember these words, because they were the words that helped me to pull myself out of the turmoil I was going through. Then I thought to myself “No, I have a long time to live yet and I have work to do before it’s my time”. Then the gentleman on the other end of the line said he was so pleased to hear me turn it around and look at it in a positive way.
The next day I went to see my family doctor. I was still unaware of what hepatitis C was and still very upset (I explained everything to him about the specialist and he advised me that he is a little bit inclined to be like that). My doctor sat down and explained it all to me. He was very understanding about how I was feeling. He told me that I would live a normal life and that I just needed to be aware of what might happen to me if I did not look after myself. He made me feel so much better and relieved. My husband has now also been tested and is negative. This also was a great relief to me.
When I went into the Gastroenterologist Clinic at Royal Perth Hospital I was treated with great respect by the doctor there. She was ever so nice and comforting. I explained to her that I had taken a herbal liver cleansing tonic and when she tested me, my ALT levels had gone down.
When we came back to South Australia in April 1998 we found a place within a week, got settled in and I then became upset because I wasn’t doing anything. I am a person who needs to be doing something or I get bored. A friend told me about a course in palliative care, so I went and did the course and it was there that I got another answer I needed to hear. During the course I asked the head doctor how many units of blood does your body need to survive. His answer was between 8 to 9 units. I knew then that I was given an extension on my life because I was given 4 units during my operation. If I’d never had them I would have died.
I have had the virus now for 21 years and I believe there is still plenty of life in this old girl yet. And no, I don’t blame anyone for what has happened to me because who ever donated the blood that was given to me probably did not even know they were infected with the hepatitis C virus.
As soon as I arrived back in South Australia I went to visit my family doctor and explained everything to him. He treated me in the same positive manner that he always had, my hepatitis C status made no difference. He also advised me that there was a Hepatitis C Council here and gave me the phone number. I contacted them as soon as I could and spoke to a worker from the Council for some time who was most helpful. He told me about the positive speaking courses run by the Council. I have now done this course and the peer telephone information course.
My doctor also referred me to the Royal Adelaide Hospital. I only had two visits with the specialist there and he referred me back to my family doctor because my LFTs were normal and that was back in December 1998 and they are still normal today.
I also think that if I’d never had the liqueur and milk drinks I probably still would not know today that the hepatitis C virus and I share a life together. It does not bother me who knows, I am still the same person and I’m living a normal life. I also know that if anyone did get the virus from my blood that it was not my fault because I did not go to hospital knowing I had any virus, also the hospital hopefully was using precautions around their use of blood.
Today I have a diploma in counselling with a major in grief and loss. I am now involved with the Hepatitis C Council in providing other people who are living with the hepatitis C virus with information and support. I feel that if I’d never had the virus I would not be able to help these people today. I also feel it was most likely the alcohol that raised my ALT levels in the first place.
The main thing I have to do in my life now is to be aware of what I eat, drink, and most of all to take care of myself. I would like to take the time to say thank you to all my family, friends, work colleges, and my doctor, and the Hepatitis C Council for their love, support, and respect they have given me.
I would like to say thank you for taking the time to read this story, and allowing me the pleasure of being able to share it with you. I hope that you have received something from it. I would also like to hear your story if you wish to share it. I believe that it does not matter how we “attracted” the virus but rather how we come to terms with living with the virus that counts.
Love to all Dawn.
This Newsletter has been put together by the Hep C Community News editorial team of Deborah Warneke (Editor), Doug Mellors, Fred, Sharon and John
