Updated: Feb 6
First, the shock of what it means.
Then the myths and toture of "concerned people".
Followed by the money-hungry medicine vendors, trado-medical curers of all diseases, including "staphylococcus" and herpes.
Nevertheless, old wive's fables of prohibited foods are not to be forgotten.
Finally, the generalist comes on board, with half-baked knowledge that does not sound as confident as chinese whispers of cure.
The list is endless.
All of the foregoing does not make it easier for the specialist to provide information to the patient. The social media has a band wagon effect that may form an avenue for the good, bad as well as the ugly.
In this write up, in my capacity as a specialist in liver diseases, as well as a clinician, I hope to provide practical actions that needs to be undertaken for a new patient that is diagnosed with hepatitis with confidence.
Practical steps that I advise patients to undertake when they are diagnosed with any disease in general, and hepatitis B in particular are what I will present in this write up. It is to be read at your leisure and with all sense of urgency and seriousness that it deserves. The following will also be useful for those that seek to support patients that need to feel confident regarding their diagnosis and hence engage with the process of regaining health.
Five basic steps that will be discussed include the following:
Think through the diagnosis
Inform your loved ones
Find information from relevant sources
Arrange appointment with a specialist
Prepare to engage with your doctor
what does a positive HBsAg mean?
additional information the doctor might ask
examination for signs of damaged liver
investigations that may be required
discussion about further management & follow up
We shall go through each step as listed.
Thinking through the a positive test result of hepatitis B is better than to just calm down. Telling people to calm down is the worst thing to do. Although, it is the best thing for one's mind, it is better to calm down following the process your mind goes through.
It is my recommendation to think clear regarding the diagnosis and not just wishing it away.
Work at confirming the diagnosis, by undergoing a second test, if possible, from an independent laboratory. If you were asymptomatic and was only diagnosed via a routine test, wait for 6 months before undergoing a confirmatory test. The presence of a HBsAg, 6 months apart is confirmatory of chronic hepatitis B virus infection.
Chronic, in this sense refers to duration of infection and not severity.
During the waiting period, do a bit of reading. Access materials from reputable sources. The WHO, CDC and NHS websites are very good. There are also apps that you can download and use for your personal education regarding the diagnosis. The Liver Health App presents generic information on accessing information about the whole concept of liver diseases, hepatitis and risk factors. Hepatitis B interactive app would advice how to go about deciding whether your status is for monitoring or treatment.
Often, patients become distressed about foods they are to avoid and foods they should eat. Liver Nutrition sources of information can also be accessed from specialists, besides authentic medical information.
2. Inform those close to you regarding the diagnosis. Due to stigmatization, some people find it difficult to inform their partners. The most common mode of transmission of hepatitis B globally is from mother to child, as well as among toddlers, globally. It is less likely that a new diagnosis of Hepatitis B in an African is via the sexual route (note that it can happen). Social stigmatization should therefore not be an issue. Informing your family can help achieve a few things: a. support for you to get well, b. prepare your family to embark on preventive measures, including vaccination against the infection.
If there is a chance that you could be pregnant (female), then a plan for prevention of transmission from mother to child can be arranged (PMTCT app).
3. Find information. An informed person can rule an uninformed person. If you do not seek information, you become vulnerable to whatever comes on you. Fortunately, and unfortunately, there are tones of information out there, some of which may harm your liver. The importance of this post is to guide you as to sources of information that have been scientifically and clinically proven to support your ailing liver.
a. Find information about specialists in your locality, experienced in the management of liver diseases. a directory or national database can be of relevance in this case. Lists of consultants in a hospital, close to where you live may also be useful.
b. The HNN app is useful for patients in Nigeria, as a source of information of hospitals and specialists that would provide care for hepatitis B.
4. Arrange appointment to see a specialist.
If you live in a region where there are specialists that care for the liver, arrange to see one. Knowing that you are positive for hepatitis B and deciding about treatment are 2 different things. Hepatitis B is not like malaria or typhoid fever that would just be kicked out with medicines. There are various aspects to its care and decision regarding the appropriate action is gained by those trained to care for your liver. If you do not have access to a specialist, then ensure that you are able to make informed decisions based on access to virtual consultations. Nowadays, there are platforms that can be utilised to get to speak to a doctor, at the click of a button, without the need to travel. One such platform is My Virtual Doctor.
There are also platforms that are working in partnerships with Bill and Melinda Gates to offer Primary Health Care services in remote settings. One such is MobiHealth .
5. In preparing to see the doctor, get your information right. Do not hide any information that can be useful in managing your condition.
You should not be surprised regarding what the doctor asks you. Also, be prepared to ask questions. It can be intimidating to see a doctor in some countries, and patients do not get given a chance to discuss their management. However, if you are prepared to ask a few questions, the doctor is more likely than not to listen to you.
A few things that you need to prepare for are as follows:
a. The doctor should be able inform the patient about the implications of a positive HBsAg test. Among the explanations are the following:
- acute infection - this is the case if the infection has lasted less than 6 months. Most infections that are diagnosed do not fall into this category. Most acute infections in the adults present with symptoms and so may be diagnosed when patients are admitted or present with some illness to the hospital.
- chronic inactive infection - almost two thirds of patients with a positive hepatitis B test are in this category. They have the infection, but are not having any significant ongoing damage to their livers. A 3rd of these patients go on to have activity and some damage to the liver, which underscores the need for continual monitoring of their status.
- chronic active infection - in this category, the patients do not have significant symptoms. But there continues to be some background activity with piecemeal damage to the liver. This can progress to cirrhosis and or liver cancer, if not treated and or if the process is not halted (treatment).
- cirrhosis and or liver cancer - unfortunately, at the point of a positive hepatitis B test, some of the patients have developed significant damage to their liver and the scarring has become irreversible.
b. The doctor will try and obtain some story from the patient. Aspects of the history that would help in optimising the care of the patients will involve drug use, alcohol consumption, family and social history as well as the wishes of the patient. It is important to present all the information as accurately as practical, so as to not compromise your care.
A few symptoms of hepatitis B infection
c. Thirdly, the doctor will perform a physical examination in order to determine, if signs of decompensation of the liver are present. Some of these signs include clubbing of the fingers and toes, red palms, liver spots ("spiner naevi"), leg or abdominal swellings.
d. After the last process, discussions of further care will include request for additional investigations (tests). Some of these include liver imaging (such as ultrasound scan), viral load (HBV DNA), liver function tests, among others. The viral load is very important, although expensive. Most international guidelines require the fact that HBV DNA above 20,000 copies should qualify for treatment. In some developing countries where the facilities for this measurement is not existing, it is relevant to consider using HBeAg status and or calculate the degree of stiffness of the liver (APRI score - uses blood tests) to determine treatment eligibility.
5. Lastly, the consultation should end with possible further care. It should be one of 2 outcomes: Drug management or monitoring of disease.
There are currently 2 forms of drug managements. Tablets and injections. Internationally, the tablets are the most utilised for treatment, due to low cost, efficacy and convenience. It the criteria to treat has been met, the doctor will discuss side effects, monitoring and assessments of response. Monitoring of liver disease requires another robust post, that we will pay attention to, on a subsequent post.
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