The liver specialist that I have seen since the whole “You have Hepatitis C” ordeal, has some answers for us. (Which in case your just now tuning in, I never had Hepatitis). The tests I had have come back. The real diagnosis (had I seen a decent doctor) would have done more investigating and (a simple test could have confirmed it) is Budd-Chiari syndrome.
“Budd-Chiari syndrome is a condition caused by obstruction of the blood flow out of the liver, most often by a blood clot. Budd-Chiari syndrome most often occurs in individuals with underlying disorders that cause blood clotting, including antiphospholipid syndrome and myeloproliferative disorders such as polycythemia vera and paroxysmal nocturnal hemoglobinuria. Chronic inflammatory disorders such as Behcet disease, inflammatory bowel disease, sarcoidosis, Sjogren syndrome, or lupusmay also cause Budd-Chiari syndrome.
Budd-Chiari syndrome affects people of all ethnic backgrounds and affects men and women equally. It is known that Budd-Chiari syndrome is a rare disorder, but exactly how often it occurs is not known.
Symptoms
Most people who develop Budd-Chiari syndrome have three main symptoms:
- Ascites, in which fluid collects in the abdominal cavity, often making the abdomen distended
- Abdominal pain
- An enlarged liver, known as hepatomegaly, because blood can flow into the liver but not out of it.
The build-up of blood in the liver can cause damage of the liver cells. If the liver is not working well, the person can develop jaundice (yellowing of the eyes and skin) and kidney problems.
Diagnosis
The usual symptoms of Budd-Chiari syndrome are not necessarily clues to its diagnosis, because those symptoms could be caused by a number of disorders. If an individual has a disorder that might cause Budd-Chiari syndrome, though, that can help with the diagnosis. The fluid that collects in the abdomen can be tested to help confirm the diagnosis. Ultrasound and magnetic resonance imaging (MRI) can help assess liver function and its blood flow. A sample (biopsy) of the liver can be taken to examine the cells under the microscope.Treatment
If left untreated, Budd-Chiari syndrome can fatally damage the liver. Medications can be given to dissolve any existing blood clots in the liver and reduce the formation of new clots. A low-salt diet can help control ascites. Special surgical procedures can relieve the blood congestion in the liver. If the liver is badly damaged, a liver transplant may be needed. Budd-Chiari syndrome is an uncommon condition induced by thrombotic or nonthrombotic obstruction to hepatic venous outflow. Budd described it in 1845, and Chiari added the first pathologic description of a liver with “obliterating endophlebitis of the hepatic veins” in 1899. Hepatomegaly, ascites, and abdominal pain characterize Budd-Chiari syndrome. The syndrome most often occurs in patients with underlying thrombotic diathesis, including myeloproliferative disorders, such as polycythemia vera and paroxysmal nocturnal hemoglobinuria, pregnancy, tumors, chronic inflammatory diseases, clotting disorders, and infections.”
This diagnosis makes perfect sense, seeing what my symptoms were, my INR levels around that time (which had been very low and in I had been on Lovinox, worried about blood clots in my legs, etc., just never knew It could be happening in my liver) and the lack of testing that was done during that hospital stay. This is all good news though…because as you know, I have a blood clotting disorder, and am already on blood thinners for life. So not much changes here, just continue what I’m already doing. Leave it to me, for something rare to happen to me. What’s funny is this is the second medical problem I have had that was named by Chiari. First Arnold-Chiari Malformation and now Budd-Chiari syndrome.
Additionally, I have a fullness in the left upper quadrant of my abdomen which is most likely the spleen tip but the doctor is not certain. In my cardiac evaluation, my second heart sound is abnormal. (These are just things to be noted).
Lastly, I have a hyperchoic lesion in the right lobe of my liver. In regards to this, I am suppose to get a contrasted triple-phase CT in 6 months. This way we can see if the lesion is growing and definitely confirm what this is. Also, I will need to follow up every few months for the next year to make sure my liver levels do not become elevated again.
Filed under: Budd-Chiari Syndrome, Health, Health Resources, Hepatology, Liz, Medical Report, healthcare













It DOES make total sense now! I’m glad that they found out what the problem was and it can be treated fairly easily.
We’ll miss seeing you guys tomorrow, but let us know how Hudson’s surgery goes. We’ll be praying for him and y’all.
Liz, please know that we are praying for you! Take some time for yourself if you can!
We’re praying for Hudson as we head to the airport in Rome to head home and will be praying as we fly this afternoon. We’ll check the blog as well when we get home and keep up.
We’re thankful for the diagnosis of what you’ve been dealing with and are praying for healing and for all to go well in controlling all of this. We’re also praying for Maddy’s surgery on both eyes tomorrow as well. Love & prayers for each of you!
Hi,
Appears that we have something in common. I had the Budd Chiari Syndrome as a result of my being a PV’er. extensive ascitis (more than 8 liters) , lesions in the liver, pain in the spleen.
I have a TIPSS placed in the liver to rechannel the blood flow. I was advised low salt and high protien diet. Now I am alright… currently on warfarin 7.5 mg, baby aspirin, occasional phlebs and Interferon.
Let me know if you need any inputs.. appears incredibly hard to find people with this disorder.
Regards,
Raghu