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Cirrhosis of the Liver: What to expect when waiting for a transplant?
Hello - This is my first time to do this; however, I'm looking for some possible advice. I am 54 and have always been very healthy. I started feeling bad back at the end of May when I decided to go to an Urgent Care center to be looked at. They took blood and when I received the results, it said that my Liver levels were in critical state and to go see a Dr. I did. They took more blood, did an Ultra Sound (which was normal), did a CT scan and did a Biopsy. The results: Stage 4 cirrhosis of the Liver. They have no explanation as to how I got it. I don't drink, it's not hereditary and I'm not over weight. It's now November. They referred me down to a larger University Hospital to see a better specialist; however, I cannot get in until Dec. 8th! I am scared! How long can I last waiting to be seen? What should I do in the mean time? I did some reading and I have cut almost everything out of my diet and with that, I am feeling a whole lot better but I know I still need a Transplant and need to get in. I'm (and my husband & family) are going crazy waiting. Would really appreciate and and all help. Thank you!
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I had a Fibrosure blood test that indicated that I had F 4 Cirrhosis. I have read online that this is a highly reliable test for cirrhosis. Does anyone know anything about the Fibrosure test? I am scheduled to have an MRI, blood tests and liver biopsy at Mayo soon. I have also read that the Fibroscan test is more reliable than a biopsy in diagnosing cirrhosis because the Fibroscan gives the "big picture" of the liver while the biopsy only tests a small sample of the liver. Does anyone know anything about this?
Hi @jazzmanfla, Welcome to Mayo Clinic Connect. I know that the blood test you mentioned tests 6 different biochemical markers that provides METAVIR fibrosis staging which is a system used to assess the extent of inflammation and fibrosis in a liver biopsy.
Did you physician who ordered the blood work provide you any literature on cirrhosis?
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1 ReactionNo.
Do you know if it is a reliable test for cirrhosis?
Hi, @jazzmanfla. I don't know anything about the Fibrosure blood test. I don't remember having that test during my liver disease and progression to cirrhosis. However, I do remember that each different blood test and each different scan or test gives the doctors more information about your liver and about the possible diagnosis for the condition that is causing the cirrhosis. This is so that a diagnosis can be determined, and with it, a potential treatment.
I want to share the link to the Mayo Clinic information about Cirrhosis - Diagnosis and Treatment
One thing that stands out is that Laboratory tests, Imaging tests, and biopsy are all tests that your doctor might order. And these are the tests that your doctors have already scheduled for you when you go to Mayo.
https://www.mayoclinic.org/diseases-conditions/cirrhosis/diagnosis-treatment/drc-20351492
My own experience is that no one test tells everything. My liver disease was discovered by my observant primary care doctor who saw some odd lab results. He referred me to a gastroenterologist (GI) who ran a series of tests, scans, labs, biopsies before finding a diagnosis.
@jazzmanfla. I had a liver and kidney transplant at Mayo in Rochester in 2009. Which Mayo Campus are you going to? What can I do to help you prepare for your upcoming visit? What questions would you like to ask?
Thanks for your reply. I am going to Mayo JAX 11/16 and 11/17 for tests, radiology and transjugular biopsy. While I do not have the more serious symptoms associated with cirrhosis, I DO have occasional slight dizziness and a marked increase in pain right in the middle of the chest in my sternum. I know that my liver is enlarged and perhaps this pain is associated with that. I went from being fat my whole life, to metabolic syndrome, to diabetes, to fatty liver, to NASH and now cirrhosis. In addition to the fear, I have a great deal of guilt and self-castigation about my situation. I feel like the guy who smoked 4 packs of cigarettes for 60 years and gets lung cancer. I have a counselor who keeps telling me that I must not look back and must move forward to further diagnosis and treatment. But I cannot seem to stop thinking like this. I basically feel that this is a self-inflicted wound and that nothing can change that fact. I am 70 years old and live alone. So, I have no support at all. And that doesn't help things. I know that there is nothing you can do about what I have said here. But you asked me and I have laid it out here how I am feeling. Thanks.
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4 ReactionsPerhaps it can help to think of all the less fortunate people in a similar situation but do not have insurance, a home, or friends.. .. you are at most retirement age limits ... what positive aspect of your life can you focus on ? your jazzman ID might indicate that music was an important part of your life.. good music can help soothe the mind.. One day at a time.. while I have been an architect, a university prof and have no psychological expertise... those one comes in contact in life demonstrate the positive is the best way to live.. Good luck to you in all you do.. do you write music, can you write about your life... ? Ken
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4 ReactionsGood points Ken. Thanks
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1 Reaction@jazzmanfla, I hope that you will have safe travels, and an informative appointment and tests next week. Do you have far to travel?
Maybe the test results will give you some answers about the occasional pain and dizziness. If this is your first trip to Mayo, I can assure you from my experience at the Rochester Mayo, that you will be getting the best of care. Be sure to take a written list of your questions.
When you get back home and rested, I am interested to hear what you find out from the tests.
I live in Bradenton, FL. Mayo Jax is 6-8 hour drive depending on traffic. Not seeing doctors. Having blood tests, imaging and transjugular liver biopsy over 2 days. Been there before for cardiac issues. Thanks.