In July last year, Nixon Abuya began feeling fatigued, lost his appetite but instead of a shrinking girth, he noted that his tummy was growing bigger and more painful as days went by.
“I thought it was a case of ulcers and treated it as such until I decided to seek a doctor’s opinion after three weeks of severe discomfort which now included vomiting blood, passing bloody stool, and swelling of the legs,” he says.
Nixon also began noticing that he was becoming a little erratic in his decision making.
“I thought there was something wrong with my brain too. I lost my job because of a decision I made. One I don’t think I would have ordinarily made,” he recalls.
At the hospital, some medical tests were done and Nixon was diagnosed with a rare condition called Budd-Chiari syndrome. Budd-Chiari is a rare disorder characterised by narrowing and obstruction of the veins of the liver (hepatic veins). Symptoms develop due to blockage of the major veins that carry blood from the liver to the heart by clots or fibrous tissue overgrowth. Nixon would also learn that his decision making skills had been affected by the problem in his liver.
“The exact figures of its prevalence in Kenya are unknown though we have a number of case reports. The disease poses diagnostic challenges from expensive tests to low index of suspicion. Not many Kenyans are able to afford the tests that aid in diagnosis,” says Dr Eugene Genga, a rheumatologist
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Nixon was shocked by the diagnosis given that he had never heard about the condition or had a family member suffer from it. He was put on treatment but was warned to keep away from alcohol, cigarettes or any drug that alters blood pressure.
“I was told alcohol would cause severe damage to my body and it could be fatal,” he recalls.
“My life has been hectic since the diagnosis. I have been on and off hospital since the bleeding and blood vomiting can come anytime. I have also had to change my diet and lifestyle.
The medication also has side effects.
“I was put on anticoagulants that put me at risk of bleeding from the oesophagus varices. It has happened sometimes and landed me in hospital a couple of times to control the bleeding.”
Budd-Chiari syndrome affects both genders but it is commonly diagnosed in people between ages 20 and 40.
Causes of Budd-Chiari syndrome
“The exact cause of about 70 per cent of all cases of Budd-Chiari syndrome is unknown, but it has been associated with some blood disorders that cause an increased risk for blood clots,” says Dr Genga.
“The severity of the disorder varies from case to case, depending upon the site and number of affected veins. In some cases, if the major hepatic veins are involved, high blood pressure in the veins carrying blood from the gastrointestinal (GI) tract back to the heart through the liver (portal hypertension) may be present. In most cases, the exact cause of Budd-Chiari syndrome is unknown,” Dr Genga explains.
Diagnosing Budd-Chiari syndrome
Diagnosis of Budd-Chiari syndrome is made based upon a thorough clinical evaluation, a detailed patient history, and a variety of specialised tests. “Sometimes we will do an MRI or an ultrasound to view the body organs. Other times we will carry out a biopsy of the liver tissue,” Dr Genga explains.
To manage Budd-Chiari needs a multi-specialty team, depending on the severity of the disease and number of organs involved
“This may range from specialists for diseases involving haematology (blood), rheumatology, gastroenterologist (liver), nephrologist (kidney), radiologists (x-rays) and surgeons. Treatment of Budd-Chiari syndrome is most successful if diagnosis is done early.”
Treatment depends on the cause or severity of the disease. It may call for surgery, like the angioplasty where the affected veins are surgically widened. Also drugs that hinder blood clotting can be administered.
“In some cases, Budd-Chiari syndrome may also be treated by shunting. This is a surgical procedure where we divert blood flow from one vein to another. In worst case scenario, a liver transplantation may be necessary, “says Dr Genga.