Battle with Hepatitis B: When her liver failed, her son became her lifeline

Patricia Karobia, a hepatitis B survivor who underwent a liver transplant in 2021 after developing liver cancer. Her son donated part of his liver to save her life. [Ryan Kerubo, Standard]

For years, Patricia Karobia went about her life without knowing that a virus was quietly damaging her liver.

A retired teacher who had spent much of her working life in classrooms across the country, Patricia was accustomed to the ordinary demands of work, family and everyday life. Then, one afternoon in 2011, while still teaching, she suddenly felt unwell. She left school intending to go home, but she never made it. Patricia fainted on the way and was taken to hospital, where doctors discovered that her haemoglobin level had fallen dangerously low.

She was advised to have a blood transfusion, although fear of contracting another infection made her hesitant. Instead, she sought advice on how she could improve her blood levels through food and nutrition. Her haemoglobin eventually improved, and she returned to her normal life, with little to suggest that something more serious was happening beneath the surface.

Further tests at different health facilities eventually revealed that Patricia had severe liver fibrosis, or scarring of the liver, which doctors attributed to hepatitis B. At the time, however, Patricia knew almost nothing about the disease.

“I didn’t know what hepatitis is,” she recalls.

Dr Alemanji Nkeng Ajua, president of the Gastroenterology Society of Kenya and a gastroenterologist at Aga Khan Hospital, explains that hepatitis is not a disease in itself, but a broad medical term describing liver inflammation.

“Hepatitis basically is the inflammation of the liver,” Dr Ajua says.

Several causes can trigger the inflammation, including viral infections, alcohol, certain medicines, autoimmune conditions, and metabolic diseases. Viral hepatitis, however, remains an important cause of liver disease, with hepatitis B and C among the major long-term threats.

For Patricia, the culprit was hepatitis B, a viral infection that can become chronic and progressively damage the liver without necessarily producing obvious symptoms.

That ability to remain hidden is one of the reasons hepatitis B can be so dangerous. Dr Ajua says many people only discover they have the infection incidentally, including during medical examinations required for travel or routine screening during pregnancy.

“Many people don’t even know it’s there,” he says.

The World Health Organisation estimates that 240 million people were living with chronic hepatitis B in 2024, including about 64 million people in the African Region. Hepatitis B caused an estimated 1.1 million deaths globally in 2024, mainly through complications such as cirrhosis and hepatocellular carcinoma, or primary liver cancer.

The disease does not always announce itself through the symptoms people commonly associate with liver disease.

When symptoms occur, they can include fatigue, nausea, abdominal discomfort, fever, dark urine and jaundice, which causes the eyes and skin to turn yellow. Some people, however, can remain apparently healthy for years.

Patricia says that was her experience. Even after she was diagnosed with severe liver fibrosis, she did not feel particularly sick. She continued with her life until she eventually began experiencing pain around the area where the liver is located.

For five years, she took medication for hepatitis B. After subsequent testing, she says doctors told her that the virus was no longer detectable and advised her to stop the medication. She stopped treatment and remained well for another three years.

Then, in 2019, something unusual began happening. Whenever she sneezed or laughed, and sometimes even while washing utensils, Patricia noticed small spots of blood coming from her nose. It did not initially seem serious, so she lived with it for almost a year before seeking medical attention.

Further investigations showed that her liver had become severely scarred.Then came the diagnosis that changed the course of her life: hepatocellular carcinoma, a form of primary liver cancer.

Patricia discovered what the word carcinoma meant by searching for it on Google.

“Carcinoma, that is cancer,” she remembers.

The word immediately made her think about death. She cried, called her siblings, and struggled to accept the diagnosis, even blaming the hospital that had delivered the news before eventually moving elsewhere for treatment.

“I don’t know how, but I should not die,” she remembers telling herself.

Fortunately, the cancer was confined to her liver and had not spread to other parts of her body. This meant that a liver transplant could be considered. For Patricia, the idea initially sounded almost impossible.

“Liver transplant? And the liver is only one,” she recalls thinking.

She would later learn that the liver is different from many other organs because a portion of a healthy liver can be donated and the remaining liver has the ability to regenerate.

The transplant option became increasingly important because the treatment she was receiving for the cancer was becoming difficult to tolerate. Patricia was placed on targeted oral chemotherapy, which caused severe blistering and inflammation affecting her hands and feet. At one point, she could barely walk and had to be wheeled around or carried.

Her illness was no longer affecting only her. Her only child, Brian Nyambura, was 28 and had just begun building a young family of his own when he watched his mother deteriorate. Then came the question of where Patricia would get a new liver.

The answer came from the person she least expected to have to ask. Brian volunteered to donate part of his liver to his mother.

On June 21, 2021, the two travelled to India for the transplant. The operation was successful, giving Patricia a second chance at life.

Her recovery, however, did not mark the end of her medical journey. Today, she remains on lifelong immunosuppressive medication to prevent her body from rejecting the transplanted organ. She also takes medication for hepatitis B and undergoes regular monitoring, including liver-function tests, alpha-fetoprotein testing and imaging.

The financial burden of living with advanced liver disease has also remained part of her reality. For Patricia, the problem is not simply whether medicines are affordable. Sometimes, the bigger challenge is whether they are available when she needs them.

“Not only affordable, but also available,” she says.

Her illness also eventually forced her to leave behind the career that had defined much of her adult life. After years of treatment and growing concerns about her health, she took early retirement from teaching.

Her experience has also exposed her to another challenge surrounding hepatitis B: misunderstanding and stigma.

Patricia says she initially associated the medicines she was taking for hepatitis B with HIV treatment because some medicines used to control hepatitis B are also used in HIV care. The overlap left her having to explain repeatedly that she did not have HIV.

Dr Ajua says the confusion is understandable because some medicines used against hepatitis B are also active against HIV. The two infections, however, remain different diseases.

The more important message, he says, is that a positive hepatitis B test does not automatically mean a person needs lifelong medication.

“Not everybody requires therapy for hepatitis B,” he says.

Treatment decisions depend on the individual’s clinical circumstances, including the level of viral replication and the extent of liver damage. WHO recommends antiviral medicines such as tenofovir or entecavir for people who meet treatment criteria, with treatment often being long term.

The danger comes when significant liver inflammation continues unchecked.

Dr Ajua explains that repeated inflammation can lead to fibrosis, where the liver develops scar tissue as it attempts to repair itself. Continued damage can progress to cirrhosis, in which the liver becomes increasingly scarred and its normal structure is disrupted. Some people can eventually develop hepatocellular carcinoma.

Patricia’s journey illustrates how severe that progression can become, although Dr Ajua cautions that liver disease does not necessarily follow the same sequence in every patient. Some people can develop liver cancer without passing through every recognisable stage.

The consequences can be devastating. WHO estimates that hepatitis B caused about 1.1 million deaths in 2024, with cirrhosis and hepatocellular carcinoma accounting for most of the deaths.

Prevention, therefore, remains one of the most important tools against the disease. Hepatitis B can spread through infected blood and other body fluids, including through sexual contact, unsafe injections and exposure to contaminated sharp instruments. It can also pass from an infected mother to her baby, particularly around the time of birth.

For this reason, preventing infection during infancy is especially important. Infection acquired during infancy or early childhood is much more likely to become chronic than infection acquired during adulthood. WHO recommends that all infants receive hepatitis B vaccination, with the first dose given as soon as possible after birth, preferably within 24 hours, followed by additional doses to complete the primary series.

Pregnancy also provides an important opportunity to identify mothers living with hepatitis B and prevent transmission to their babies. WHO recommends testing pregnant women for hepatitis B and, where indicated, the use of antiviral prophylaxis such as tenofovir for women with high viral loads, alongside timely newborn vaccination.

WHO recommends testing people at increased risk, including household and sexual contacts of people living with hepatitis B, healthcare workers, people who inject drugs, people in prisons and other closed settings, people living with HIV and people from regions where hepatitis B is common. In countries and settings with intermediate or high prevalence, WHO increasingly supports broader access to hepatitis B testing, alongside linkage to care.

For Patricia, knowledge came late. She says there was a time when she could not have imagined openly discussing hepatitis B. Her experience with illness, cancer, transplantation and recovery has since pushed her into advocacy and patient support, where she now encourages other people living with liver disease to seek care and learn more about their condition.

Her message to someone who has just tested positive is straightforward: do not panic, do not self-medicate and do not ignore medical advice.

“They should go try to join organisations which will support and encourage them and know that hepatitis is not a death sentence as well as cancer.”

Patricia knows the difference between hearing those words and living them. There was a time when she could barely walk, a time when the word cancer made her fear that her life was coming to an end, and a time when the possibility of a liver transplant seemed almost impossible. Then her only child stepped forward and gave her part of his liver.

Today, her story is a reminder that hepatitis B does not always announce itself with pain, yellow eyes or dramatic symptoms. Sometimes it can progress quietly while a person teaches, works, raises a family and laughs with friends.

Early detection, vaccination, appropriate treatment and continued monitoring can change that trajectory. For Patricia, the warning came late. When her liver finally needed saving, her son was there to give her a second chance.