@racing212 Do you have cirrhosis? I had non-alcoholic cirrhosis and had a liver transplant in September 2016. If there is anything you want to ask, please feel free. I will try to answer to the best of my ability based on my own experiences.
@racing212 Do you have cirrhosis? I had non-alcoholic cirrhosis and had a liver transplant in September 2016. If there is anything you want to ask, please feel free. I will try to answer to the best of my ability based on my own experiences.
@racing212 I had symptoms for a number of years that were never attributed to cirrhosis -- declining platelet counts, shaky hands, retaining fluid in my feet, but then I had an HE (hepatic encephalopathy) episode and that made the doctor know there was something going on, but the other symptoms were still not connected to the problem. The HE made the doctor I went to at that time think my problem was neurological. and she sent me to a neurologist. Before that she actually called me on the phone and told me she thought I had Alzheimer's! The neurologist was the one who suggested it might be a liver problem, at which point a test for ammonia was done. By then I had changed PCPs. My ammonia was high so I was sent for a CT and that confirmed cirrhosis. It took about a year and a half after my first HE episode for the doctor to finally figure it out despite the other symptoms being typical signs of cirrhosis too. I was then told to see a hepatologist and went to one at Mass General. She told me that I probably had cirrhosis for 10 years! Apparently it takes a while to really present itself.
What I learned from that was if a diagnosis is not identified in a relatively reasonable amount of time, to head to Boston. I live in southern NH.
I hope you are seeing a good hepatologist and the doctor will guide you well in the best ways to prevent the cirrhosis from advancing further. Some people are able to go for a very long time following dietary restrictions and never need a transplant.
Again, please feel free to ask any questions you would like answered. Those of us who have been there are glad to share with people now going through it.
JK
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@adah, I have had several of liver biopsies due to liver disease. It is the way that the liver Gastroenterologist (GI) or Hepatologist (liver spcialist) can find out if there is any damage inside the liver, or to what degree. Elevated LFT's (liver function tets) can only show that there is something that is acting against the liver.
If I can be of any help or answer what I remember, please let me know.
Hi Rosemary,
I have just been advised that I will need a guided liver biopsy for possible non alcoholic PBC. I am extremely nervous about it. Can I ask you if you have had this type of test and is it very painful? I’m very scared.
Hi Rosemary,
I have just been advised that I will need a guided liver biopsy for possible non alcoholic PBC. I am extremely nervous about it. Can I ask you if you have had this type of test and is it very painful? I’m very scared.
@ali1974, Welcome to Connect, Alice. I understand your nervousness right now after being told that you will need a liver biopsy. I am happy to share what I have experienced.
A guided liver biopsy is an outpatient procedure. The doctor will use ultrasound device to determine the place where he wants to take the samples. After he/she marks the spot, he will (in my experience) take 3 very thin threadlike samples with a hollow needle. He will use an instrument with a trigger-like action to insert the needle - it is like a 'snap- then done. He did this 3 x to get 3 samples with a pause between them. During that time he or the assistant chatted with me, and constantly asked if I was okay. Which I was. I felt no pain because the area had been numbed. What I felt was pressure and then a snap each time. My anxiety was high and each time the doctor would tell me when to expect the pressure/snap.
Afterwards, I remember thinking that "Whew, that wasn't so bad!"
I don't recall it taking long, but afterwards I had to lie flat and still while being monitored for any bleeding and for BP to return to normal. After a while I was able to sit up and was able to eat and drink. I forget how long until I was discharged.
After discharge, I could take tylenol if I had any pain and my doctor told my to take it easy for a day or two with no heavy lifting or strenuous activity.
Alice, Have you been scheduled for the liver biopsy, yet? What are some questions that you have?
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@racing212 Do you have cirrhosis? I had non-alcoholic cirrhosis and had a liver transplant in September 2016. If there is anything you want to ask, please feel free. I will try to answer to the best of my ability based on my own experiences.
What symptoms led them to do a liver biopsy?
JK
I do
Have non alcoholic cirrhosis, fluid build up
@racing212 I had symptoms for a number of years that were never attributed to cirrhosis -- declining platelet counts, shaky hands, retaining fluid in my feet, but then I had an HE (hepatic encephalopathy) episode and that made the doctor know there was something going on, but the other symptoms were still not connected to the problem. The HE made the doctor I went to at that time think my problem was neurological. and she sent me to a neurologist. Before that she actually called me on the phone and told me she thought I had Alzheimer's! The neurologist was the one who suggested it might be a liver problem, at which point a test for ammonia was done. By then I had changed PCPs. My ammonia was high so I was sent for a CT and that confirmed cirrhosis. It took about a year and a half after my first HE episode for the doctor to finally figure it out despite the other symptoms being typical signs of cirrhosis too. I was then told to see a hepatologist and went to one at Mass General. She told me that I probably had cirrhosis for 10 years! Apparently it takes a while to really present itself.
What I learned from that was if a diagnosis is not identified in a relatively reasonable amount of time, to head to Boston. I live in southern NH.
I hope you are seeing a good hepatologist and the doctor will guide you well in the best ways to prevent the cirrhosis from advancing further. Some people are able to go for a very long time following dietary restrictions and never need a transplant.
Again, please feel free to ask any questions you would like answered. Those of us who have been there are glad to share with people now going through it.
JK
R
@debralbh, Hi, and Welcome. Did you intend to send a response?
I will get it if you send a reply by following these steps; 1-click "reply", 2- type message, 3- send.
I will be happy to help you? What would you like to ask?
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1 ReactionHi Rosemary,
I have just been advised that I will need a guided liver biopsy for possible non alcoholic PBC. I am extremely nervous about it. Can I ask you if you have had this type of test and is it very painful? I’m very scared.
Regards,
Alice
@ali1974, Welcome to Connect, Alice. I understand your nervousness right now after being told that you will need a liver biopsy. I am happy to share what I have experienced.
A guided liver biopsy is an outpatient procedure. The doctor will use ultrasound device to determine the place where he wants to take the samples. After he/she marks the spot, he will (in my experience) take 3 very thin threadlike samples with a hollow needle. He will use an instrument with a trigger-like action to insert the needle - it is like a 'snap- then done. He did this 3 x to get 3 samples with a pause between them. During that time he or the assistant chatted with me, and constantly asked if I was okay. Which I was. I felt no pain because the area had been numbed. What I felt was pressure and then a snap each time. My anxiety was high and each time the doctor would tell me when to expect the pressure/snap.
Afterwards, I remember thinking that "Whew, that wasn't so bad!"
I don't recall it taking long, but afterwards I had to lie flat and still while being monitored for any bleeding and for BP to return to normal. After a while I was able to sit up and was able to eat and drink. I forget how long until I was discharged.
After discharge, I could take tylenol if I had any pain and my doctor told my to take it easy for a day or two with no heavy lifting or strenuous activity.
Alice, Have you been scheduled for the liver biopsy, yet? What are some questions that you have?
-
Like -
Helpful -
Hug
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