Living with Hepatitis C

Welcome to the club! I trust that you've read the Beginners Guide already, or already know the basics. This section is aimed at people who have the virus, and are wondering what to do next!

First and foremost, it is everyone's moral duty to try to prevent anyone else catching the virus. Equally, anyone who might already be infected should be given the chance to find out. So, like it or not, you are going to have to tell your immediate family, and suggest that they get tested. Explain that the odds of them having the virus are extremely small indeed, but 'you can never be too careful', and you personally would sleep a lot easier if you knew that they were virus free. You need to take sensible steps to reduce the risk of transferring the virus to others, which in practice just means a few basic precautions. Find a way of making sure that nobody uses your shaving kit, towels, or toothbrush. My method is to use a red towel, toothbrush, etc. and lecture everyone including visitors that 'anything red in the bathroom is dangerous'. It is simple and it works! You also need to distribute a few pairs of disposable gloves amongst any first aid kits that you have, and make sure that you have a supply of household bleach or alcohol available for cleaning up should any of your blood ever get spilt. Note that you can safely deal with your own blood, the only risk is when others come into contact with it!

You need to tell your dentist. Suggest that he gives you the last appointment of the day, as his routine end-of-day surgery cleaning will ensure that no contamination is passed on, and this way it is no additional work for him. Having Hep C has no effect on dental treatment, as it should be carried out in a safe manner anyway. All dentists are trained to do this.

Who you tell outside those who actually need to know, is up to you. Personally I take the view that the more people who know, the better. If the matter is in the open it stops ridiculous rumors spreading, and makes life easier. Educating others adds to the general pressure on the authorities to spend more on treatment and testing, and counters some of the ridiculous, scaremongering, and inaccurate reports in the media. On the other hand, this approach is not for everyone. Hep C carries with it a certain stigma amongst the 'less well informed', and ignorance can lead to unpredictable reactions from people who should know better. You have to balance the benefits and risks of telling those who strictly do not need to know. In many respects, it is a case of Pandora's box, in that once the information is out it cannot be undone. The potential effects on family, friends, and fellow employees (and employers!) need careful consideration. If in doubt, keep quiet! One piece of advice that I do positively recommend is that regardless of your actual source of infection you tell others that your source was an 'innocent' one. Favourites are medical treatment with blood products, or tattoo's. Do not under any circumstances let anyone get the impression that you acquired the infection from illegal drugs or you risk being classed as a worthless druggie even if you strayed on one single occasion 30 years ago. Those pointing the finger will of course have blameless pasts!

With very few exceptions, there is generally no need to tell colleagues or bosses at work. First aid training nowadays is such that all body fluids are treated as infections, so no special treatment is necessary for those carrying the virus. There are obvious exceptions for those in specific professions, particularly those in the medical world who deal with 'invasive procedures'. If in doubt, advice from a union or trade body is usually free, confidential and accurate. The situation often changes when treatment starts, as experience has shown that it is virtually impossible to go through 24 or 48 weeks of treatment without employers knowledge and cooperation.

There are a few basic things that everyone with Hepatitis C can do to help themselves, the first and most obvious of which is don't drink alcohol. The liver of an infected person is going to be placed under strain by the virus, and any additional strain from dealing with alcohol is not welcome. There is also very good evidence that alcohol encourages the virus, as those that drink have higher viral load than those who don't. This does not mean that you should never drink alcoholic drinks, it is just a case of cutting alcohol to the absolute minimum. The occasional social drink is unlikely to do any damage, but if you drink regularly, or binge drink, damage will build up. All the above are doubly important if you are being treated, as alcohol diminishes the effectiveness of treatment.

Get and keep your weight under control. Obese people respond less well to treatment, and their liver's have to work that much harder. The worst ingredient in any diet is so-called saturated fat, particularly animal fat. As a general rule, fats that are liquid at room temperature are OK (in moderation) and those which are solid are not. If you want to know what your Ideal Body Weight should be, for a male its 50kg plus 2.3Kg for each inch of height over 5 feet, and for a female 45.5Kg plus 2.3Kg for each inch over 5 feet. If you want to loose a serious amount of weight do not attempt it without professional help. G.P.'s love referring people to dietitians. It makes their statistics look good. Reluctant as I am to plug it, Weightwatchers works.

Get vaccinated against Hepatitis A and B. One liver virus at a time is plenty, and a second one could be fatal. Your doctor should advise this, but remind him if he doesn't. These vaccines do not always 'take' first time, so make sure that you are tested to prove that they have. It would be wise not to eat raw fish, particularly shellfish until you are sure that you are fully protected.

Avoid all non-prescription medicines and supplements. If you must take something for a headache paracetamol (acetaminophen, Tylenol) is vastly safer than aspirin or ibuprofen. This is ironic as overdoses of paracetamol cause liver damage. Keep it to the absolute minimum, and never exceed the recommended dose or dose interval. There has been recent research that indicates that the aspirin group of drugs (which include ibuprofen) can be harmful to hepatitis C sufferers, and they should generally be avoided. This is particularly true if you have any symptoms of cirrhosis or liver failure. Don't be afraid to consult a doctor if you feel that you need to. Doctors have a wide variety of medications available which do not compromise liver function. Why risk over-the-counter medications? Be extremely wary of herbal medicines and supplements. Contrary to popular belief these are not approved or tested, no matter what the manufacturers claim. You are highly unlikely to improve your condition with any of these, and very likely to cause damage. Certain vitamins in high doses are known to cause liver damage, and others are known to impede treatment medications. I advise you to stick well clear of all of these and just eat a well-balanced diet.

If you wish to use alternative medicine, homeopathy and acupuncture will not harm your condition, and some derive benefit. Don't forget to tell acupuncturists that you have the virus, as contaminated needles are dangerous. Massage, reflexology, aromatherapy, and hypnotherapy may well help you, and will do no harm. Note that no serious practitioner of alternative medicine should ever claim to be able to cure you. If they do, run a mile, as they don't know what they are doing. Alternative medicine should be seen as an addition to conventional medicine, not a substitute. The only route to a cure for Hepatitis C is via conventional treatment.

Treatment of Hepatitis C is way outside the remit of the average family doctor, and requires the skills of a specialist. Even if you have no intentions of starting treatment, you would be well advised to seek the services of a specialist before coming to any decisions. This is particularly so if you are being treated for any other condition, as drugs used to treat other conditions may exacerbate Hepatitis C problems. This is often the case with arthritis and diabetes medications. Incidentally, there are a high number of cases of rheumatoid arthritis which are not arthritis at all, but the effects of the virus. There is also evidence that the virus increases the rate of deterioration of R.A. cases. Treating the virus successfully often halts the decline, and in some cases removes the symptoms altogether.

Generally speaking, newly diagnosed Hepatitis C patients need not rush to any treatment decisions. The virus generally causes a slow deterioration, and a few more days will make little difference. Don't panic. Take your time. Discuss it fully, and only then decide if you want to be treated.

The first question any specialist will be interested in is how long you have had the virus. Be honest. How you got it is not relevant. When you got it is. You can probably work out your source of infection and it will help the specialist to know. He or she will probably want a full set of tests done to assess your current status, and it is wise to await results of these before considering treatment. You should make a point of asking which genotype you have and what your viral load is at present as these should be factors in your decision. Blood tests will indicate how well your liver is functioning, but in many cases a biopsy and/or ultrasound scan will be required to get the full picture. Don't be afraid to ask questions, and make sure that you are as fully informed as possible.

Hepatitis C affects each patient in a different way, and it is very difficult to generalise. The vast majority of patients have very few symptoms that can be directly attributed to the virus. In many cases it is possible just to tolerate these and continue a normal life with no virus complications. In these cases it is important that regular liver function tests are performed to ensure that any deterioration is detected before serious damage is done. Not treating the disease is a bit like playing Russian Roulette. You know that most of the chambers in the pistol are empty, and the odds are in your favor, but you are also aware of what can happen. Because of the long incubation period of the virus many people will have died from natural causes at a ripe old age before the virus could intervene. Equally, the virus can become a factor much earlier and cause liver failure and cancer. I personally take the view that 'if in doubt - treat it!'

It has been shown that patients with a positive mental attitude fare a lot better than those without. They do considerably better whilst on treatment, and generally seem to tolerate both virus and treatment better. Try not to let the virus get to you. A bit of old fashioned grit and determination goes a long way towards improving your own situation and that of those around you!

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