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Liver Diseases Support Group: Let’s connect
Welcome to the Liver Diseases support group on Mayo Clinic Connect.
If you or someone you care about has a liver disease — or you are questioning if it might be liver disease — this is a great place to talk to others with similar experiences. It’s a welcoming forum to learn from each other and share stories about challenges, coping strategies, setbacks and what helps.
Take these steps to participate in the group:
- Follow the group.
- Browse topics.
- Use the group search to find answers to your questions.
- Introduce yourself.
Let's chat. Please start by introducing yourself. What is your experience, or your loved one’s experience, living with liver disease or possible liver disease symptoms (i.e., what symptoms you've experienced, what type of disease, how long since diagnosis, how it’s managed)? Do you have a question, tip or story to share?
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@desertsavage Merry Christmas.
My name Stallita
It all started with an infected gallbladder whìch was removed my gallbladder was so infected it turned to gangrene & I taken to SLC Utah when the doctor removed it she tore my bile duck so I had an immediate procedure done . It took 1yr to heal & I still have problems with bile in my stomach then about 3yrs later Im diagnosed with scaring of the liver & fibrosis of the liver & still waiting on a fibrosis test so I don't know what stage Im in ? Of which I don't get what the doctor means when she says my liver is good but I have fibrosis. Im hoping I can get more information regarding my situation from the support group
Thank You
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3 ReactionsHello, I was diagnosed with hepatitis C decades ago but it was not treatable due to no viral load.
I began drinking heavy 9 yrs ago after losing my husband, but I recently stopped after learning that my liver is enlarged, I’ve lost 40 lbs, fatigued and can hardly stomach eating much anymore.
I’ve been through lots of tests to learn just that my liver is enlarged and will have a scope by gastroenterologist soon.
I lost my late husband to liver cancer and am now pretty certain I’ve damaged my liver to a scary extent.
I don’t know what to do and I need support & resources.
This is interesting, I thought Hep C was diagnosed by the presence of the Hep C virus, the viral load. I wonder how yours was diagnosed with no virus present. There are good treatments for Hep C, if your labs show a viral load now. Has this been tested? It is well worth it to review your own tests and google unknown terms and abbreviations for any out-of-range results. These days we have to advocate for ourselves. Your gastroenterologist will be able to tell you more after testing, an enlarged liver might indicate different things. In the meantime, do everything you can to stay healthy, no drinking, eat whole foods, exercise. Be in the best possible position to recover or have successful treatment. Good luck.
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1 Reaction@ruthieellen
Hi Ruthie and welcome to Connect. I am a patient and have no medical traning, however, I am a transplant recipient due to a liver disease, and I think that I can understand your fear and confusion right mow. There are many tests, and many questions that you are going to be facing. I can see that you are a strong and determined individual because of your committment to refrain from alcohol, which is an important step. In my experience, I did have fatigue and lack of appetite as symptoms associated with liver disease. Try to remember that even though you don't want to eat, it is important that you try to maintain a healthy diet.
I want to share information about Enlarged Liver with you. I think that one big thing that you can do currently, is to learn about your conditiion. So here is the link to Mayo Clinic's Health Education - Enlarged Liver
https://www.mayoclinic.org/diseases-conditions/enlarged-liver/symptoms-causes/syc-20372167
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I think it is good that you will be undergoing a scope by a gastroenterologist in the near future. When is your procedure scheduled?
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2 ReactionsHi,
My name is Mimi. I have liver disease stage four my question is when is it too late to qualify for a little transplant? Would I qualify for just half a liver or at this point would I need a whole liver? I have Nash.
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3 Reactions@mimi94
Hi, Mimi and Welcome to Connect.
If you qualify to receive a liver transplant after referral and comprehensive medical evaluation at a transplant center you are entered on the transplant wait list to receive a liver from a deceased donor. Or, if you have living donor, you can recieve a part of the donor's liver without the long wait.
Are you being seen at a transplant center yet?
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4 ReactionsNo not yet. I have a a specialist, but I honestly feel as she has said the tire is still good. It’s worn but not quite ready to be changed. I am scared, though that we’ll get to a point and we can’t change the tire I did request another doctor, but was denied.
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2 Reactions@mimi94
My GI used a similar analogy when I asked him about whether I needed to see a transplant doctor. His response was that we are packing and loading the car for a trip so that we will be ready when it is time. I had labs and check-ups every 3 months.
I had a different liver disease, but when it was time - he made the referral.
Do you have any follow-up appointments, or any labs to monitor your condition?
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4 Reactions