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Another "misdiagnosed"?

Here goes. I have Addisons Disease and was rushed to hospital in severe crisis. I recall someone saying I had cirrhosis but it was never mentioned again. After a lengthy stay I was sent for respite care and found out by reading my discharge papers that I have Decompensated Chronic Liver Disease which is a bit of a shock as I have no symptoms. I have also just found out that there is a DNR on my file which I knew nothing about and I guess based on this diagnosis. No one has spoke to me about it or referred me to specialists. Don't know what to do. More info if you need it but would appreciate thoughts/advice.
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683231 tn?1467323017
“How is the diagnosis of primary biliary cirrhosis made?

The diagnosis of primary biliary cirrhosis is considered when the doctor suspects that there might be liver inflammation based upon the history and physical examination. Initially there may be few symptoms like itching or fatigue to help guide further testing

The diagnosis may be made incidentally when abnormal liver functions be found on routine blood tests drawn for another reason. Liver function tests include AST (aspartate aminotransferase), ALT (alanine aminotransferase), GGT (gamma-glutamyl transpeptidase), alkaline phosphatase and bilirubin. Blood levels tend to become elevated in liver disease and they may rise in specific patterns depending upon the underlying cause of inflammation.

Once the diagnosis is suspected, a blood test to check for antimitochondrial antibody (AMA) is usually done. This is positive in over 90% of patients with PBC.

Other blood tests may be considered including a complete blood count (CBC) and cholesterol levels.

Imaging of the abdomen by ultrasound, CT scan or MRI is often considered to look for structural changes in the liver and to search for tumors.

A liver biopsy, where a thin needle is inserted through the skin to take a piece of liver tissue, may help confirm the diagnosis. This tissue is examined under a microscope by a pathologist to look for changes consistent with PBC. It is also useful to help stage the disease, deciding its severity at the time of diagnosis.”

“What is the treatment for primary biliary cirrhosis?

The only "cure" for primary biliary cirrhosis is liver transplant, but it is only considered as a treatment option if other less aggressive treatments have failed and the patient develops liver failure.

Ursodiol (Actigal) or ursodeoxycholic acid (UDCA) is the first line treatment for PBC. It helps the liver transport bile into the gallbladder and intestine, in an attempt to prevent cholestasis.

Depending upon the severity of the disease, immune suppression medications may be prescribed, including methotrexate (Rheumatrex, Trexall), cyclosporine and prednisone.

Itching may be intense and difficult to control. Antihistamines like diphenhydramine (Benadryl) may be helpful but other drugs may be considered including cholestyramine (Questran, Questran Light), which helps bind bile and decrease the itching associated with elevated bilirubin levels in the blood.

Complications of PBC will need to be cared for. These include cirrhosis, portal hypertension, gastrointestinal bleeding, osteoporosis, and vitamin deficiencies.”
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683231 tn?1467323017
Did they say you have primary biliary cirrhosis?

I found this information about PBC which can be caused by Addison’s disease.

“The disease is typified by two symptom sets: fatigue and pruritus, which can occur at any stage of the disease process, and the features of advanced liver disease, which occur when secondary liver damage results from bile retention.”

“Primary biliary cirrhosis (PBC) is a progressive disease of the liver caused by a buildup of bile within the liver (cholestasis) that results in damage to the small bile ducts that drain bile from the liver. Over time, this pressure build-up destroys the bile ducts leading to liver cell damage.”
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683231 tn?1467323017
I am very curious on what basis did they diagnose liver cirrhosis? Did you have a liver biopsy? This is considered the gold standard for the diagnosis of cirrhosis. Other newer less invasive tests are becoming more frequently used to diagnose cirrhosis. These tests are the Fibroscan which is similar to an ultrasound except the unit produces a sort of thump to estimate liver stiffness and the fibrosure blood test which can also estimate liver fibrosis. If you haven’t had one of these tests you haven’t been properly diagnosed with cirrhosis. While an abdominal ultrasound or an MRI can see signs indicating cirrhosis the only tests that can officially diagnose cirrhosis are the liver biopsy, Fibroscan, and fibrosure test.

Is your platelet count normal? Have you had an upper endoscopy to check for varicies? Do you know your MELD score? Have you been evaluated for liver transplant assuming you are willing to undergo the procedure if you enter into liver failure.

You need to be under the care of a hepatologist associated with a liver transplant center to properly follow your case.

I get blood testing and abdominal ultrasound every six months and see my hepatologist yearly.

Let me know if you have any additional questions
Helpful - 0
683231 tn?1467323017
People with advanced liver disease generally don’t have much if any symptoms early on. One a person with cirrhosis begins to this is by definition when you will experience symptoms of liver failure.

Common early symptoms are a low platelet count and the development of lower leg swelling called putting edema.

Other symptoms are the development of fluid in the abdomen called ascities. Ascities could be only visible on ultrasound or pronounced ascities where the patient appears pregnant. For massive ascities the patient will likely need to be drained of this fluid periodically.

Another symptom is the development of enlarged blood vessels in the swallowing  tube  called esophageal varicies. These would be found using upper endoscopy. If not tested for these varicies can enlarge  to the point that the blood vessels can burst and a significant life threatening bleeding episode could occur.

Patients can also develop Hepatic  encephalopathy also called  HE. A patient could become disoriented and have difficulty forming thoughts and sentences.

I was diagnosed with cirrhosis in January 2008. So far all I have had is edema, a low platelet count, and esophageal varicies that requires banding.
Helpful - 0
683231 tn?1467323017
No idea how you would have a DNR that you are not aware of and requested to have created. That should be a patient’s or family’s decision. Sounds quite odd

“What is a DNR?

A DNR order is created, or set up, before an emergency occurs. A DNR order allows you to choose whether or not you want CPR in an emergency. It is specific about CPR. It does not have instructions for other treatments, such as pain medicine, other medicines, or nutrition.

The doctor writes the order only after talking about it with the patient (if possible), the proxy, or the patient's family.”
Helpful - 0
Medicine/Medical.do not resuscitate:
(used in hospitals and other healthcare facilities to indicate to the staff the decision of a patient's doctors and family, or of the patient, to avoid extraordinary means of prolonging life).
do not return.
Also D.N.R.
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683231 tn?1467323017
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