The symptoms of Budd Chiari Syndrome vary between patients. Depending on how fast the onset of the disease is, some people will experience the more severe symptoms and others like myself, the blockages build up slower and only mild symptoms are experienced.
Many of the symptoms can easily be misunderstood as signs of something else. When I was diagnosed, I was pregnant and brushed off most of them as pregnancy related. Looking at the list now, it’s easy to see how those mistakes can be made.
Signs of Budd Chiari Syndrome
- Nausea and vomiting
- Pain in the upper right abdomen
- Weight loss
- Enlarged liver and spleen
- Portal Hypertension
- Esophageal Varices
- Hepatic Encephalopathy
- Liver failure
Pregnancy vs. Budd Chiari Syndrome
Ask any mom what it’s like to be pregnant and she will tell you it’s exhausting. Many moms deal with awful nausea and vomiting during the first trimester. And we all know that everything grows when you are growing a human. Bellies get bigger, some experience leg swelling and at times it can be uncomfortable or painful. Can you see where I am going with this? I had no idea any of the symptoms I was experiencing were pointing to something bigger.
When you have liver disease your liver is no longer able to filter and eliminate toxins. The extra waste product in the body can lead to awful nausea and vomiting. I remember my doctor telling me that constant nausea is usually one of the first signs of liver disease. But I thought it was just morning sickness.
I thought I knew what complete exhaustion was before. I was wrong. Fatigue is another common complaint for patients with liver disease. And it could be caused by so many things that my doctors haven’t been able to pin it to one specific thing and treat it. Between your body having to work harder as the liver function slows and the stress of living with a chronic illness, fatigue is just bound to happen.
Liver pain should never be ignored. The pain is usually felt in the upper right quadrant of the abdomen just under the ribs. And it could be different types of pain. From dull, achy and throbbing pain to the sharp stabs of pain that take your breath away.
As my liver grows larger I get more and more uncomfortable. Sitting up straight and not hunching over helps with the discomfort. It’s important to remember that with liver disease, certain pain medications are a no go, so check with a doctor before you take anything.
Budd Chiari Syndrome means the veins that carry blood out of the liver and into the heart are blocked. This causes the liver to become congested and enlarged. And eventually the blood flow is back up into the spleen as well. My liver has almost doubled in size. A woman’s spleen usually averages around 12-cm. My last scans show mine was 17.3-cm.
My spleen has also been displaced from its normal spot behind my left ribs to my pelvis. It was once mistaken as a third kidney which makes my doctors think that I could have been living with Budd Chiari Syndrome for much longer than we originally thought.
I have been lucky to not have had any major swelling issues. Ascites is the collection of fluid in the abdomen and edema is when the swelling is in the lower extremities, such as legs and feet. Keeping up with a low sodium diet played a big part in keeping the fluid off. I have had mild swelling in my feet. A few years ago I discovered compression stockings and they have helped so much. When diet and diuretics do not work some patients will need to have the fluid removed with a needle tap.
The portal vein carries blood into the liver. But with congestion in the liver, the blood can no longer flow normally. This pressure backs up in the portal vein and creates what is known as portal hypertension. The increased pressure can then cause esophageal varices or varicose veins in the esophagus.
Varices can leak or rupture causing life threatening bleeding. It is important to be aware of the signs of bleeding and to go to the Emergency Room or call 911 immediately if you experience them. I have an endoscopy every year or so, to keep an eye out for varices. If found early they can be treated with medication or banding to stop the bleeding.
Jaundice is one of the most visible symptoms of liver disease. I have not experienced jaundice like many others have. A healthy liver will get rid of excess bilirubin but when the liver no longer functions properly, bilirubin can build up and jaundice sets in.
The skin and eyes will become yellow. I think because most of the symptoms I have had have been “invisible” and jaundice is very visible, I worry about the day it happens to me. Mostly because if my family can see it, I know they will worry even more.
And then there is Hepatic Encephalopathy. This has been the big life changer for me. My liver is no longer able to filter toxins so they get into my bloodstream and wreak havoc on my brain. The first time I realized something was wrong, I had blacked out in the middle of the grocery store. One minute I was fine and the next minute I had no idea where I was or who was with me. The stages of H.E vary from mild confusion and mood changes to coma. Eating less animal protein and taking my medications as directed help keep my Hepatic Encephalopathy at a minimum.
With signs that point in all different directions, it’s important to listen to what your body is telling you. Be sure to be straightforward with your doctors about any symptoms you are experiencing. Living with Budd Chiari is a rollercoaster but knowing what to expect can make life a little easier.