I'm a new member, still in disbelief after being diagnosed 3 weeks ago with Cirrhosis, stage F4. Fortunately, I'm currently in the "compensated" phase, though I understand that could change at any moment. I'm having a trans-jugular liver biopsy on Wednesday, Dec. 5, at 2:30 pm - kind of late in the day. In all honesty, I'm pretty scared about this procedure. I live in the U.S., and they won't keep me in hospital overnight - I get kicked out after 4 hours of observation. Since I live alone, I'm having friends with me at home until 22:00. But the hospital recommends that "a responsible adult" spend the night, since the main risk in that first 24 hours is bleeding out?! Um, I'm wondering how my friend in another room would even hear me or know if I'm in trouble? I'm also concerned about the pain. There is currently an opioid crisis in the U.S., so doctors are very conservative and will only give me regular tylenol afterward. Will that be enough? I'd really appreciate hearing about anyone's experience with this type of biopsy (pain, needing someone overnight, etc.) - both good and bad. I'm a realist and like to be prepared for the worst while I hope for the best. Thanks very much in advance for your time and help. I'm so glad to have found this group.
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AmericanDemocrat
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Hi AmericanDemocrat, you should be fine with your transjugular liver biopsy. My hubby had one back in 2014 and found that he had no pain at all - just a slight pulling sensation in his neck when they actually took the samples and then withdrew the needle. Transjugular is the safer method with less chance of problematic bleeding since there is no piercing of the liver or abdominal wall, the needle is threaded through blood vessels all the way to and from the liver. My hubby had to stay in hospital pre and post his procedure as he had very low platelets and required a platelet transfusion before he could have his biopsy done.
Make sure you empty your bladder (and bowel) if you can before the procedure as you arn't meant to rumble about & certainly can't get up to use the bathroom in that few hours post biopsy.
Ideally you should have the other person with you through the night - at least to be on hand to get emergency help if needed but you should be ok provided you can phone yourself in an absolute emergency.
Hubby had no pain after his procedure and also would only have had tylenol or paracetemol as it is over here.
Hopefully all will be well with yours too.
Just to put your mind at rest too on the compensated liver issue, my hubby was first diagnosed in April 2012 after a massive bleed from varices and deranged LFT's - his condition being caused by auto immune liver disease. Within 3 weeks he was home and stabilised - no further jaundice, no ascites, only minor HE and varices all dealt with by banding. 6 years down the line he is still stable, has gained and maintained weight and muscle and has next to normal LFT's. Ok he's not 100% fit and isn't able to work etc. but by no means is he at deaths door and is being closely monitored by me and two lots of doctors.
Hi, Katie, thanks so much for your reply. I'm thrilled to hear your hubby didn't have pain. I had heard the opposite from a number of people, so I guess it varies? Hopefully, mine will be like your hubby's. Since your hubby had varicies, and jaundice, is he still considered compensated? Can you move from decompensated back to compensated? Thanks again, very much ...
My hubby only had jaundice in April 2012 - nothing since. Varices all banded and gone (last banding was May 2014). He was decompensated back in April 2012 but is considered very much compensated and stable now so yes you can go compensated again even after periods of decompensated. My hubby was listed for transplant for 10 months but delisted May 2015 because his condition stablised so much.
It's not all doom and gloom even with cirrhosis - hubbies consultant has got patients on his books who have had a cirrhosis diagnosis for over 20 years and are no nearer transplant now than they were when first poorly.
This is all so great to hear. Thank you for the information and the encouragement. I am thrilled to hear you can move from decompensated back to compensated! Thanks again and take care ...
Perhaps the people you spoke to had the other type of liver biopsy which I've read is more painful and thus one reason why doctors have gone to this type. People hear liver biopsy and don't always realize there may be different types.
I had the low platelet count as well, along with a load of other blood issues. During the stay when I had the biopsy, I had six bags of blood, 1 platelet (is that the yellow one that looks like custard?), plasma and 14 bottles of Albumin. The biopsy, though the neck, head in a tent, oxygen mask, staff arguing over music choice, it was unpleasant but not painful, it was the noise of the hammer🔨. Not painful and no bleeding issues afterwards, so no need to worry AmericanDemocrat, if there is a problem, it should rear it’s head in the first four hours.
I had this procedure and felt a slight tug which was nothing really. The worst thing was waiting for the procedure. Post procedure I had to wait a while before I could use the toilet. You will be fine. Good luck.
I don't know much about a transjugular biopsy other than that it is considered a fairly low risk way to do a liver biopsy, I think it is normally considered outpatient surgery and if you are still having bleeding from the site they will keep you in the observation area. The main thing after getting discharged is to follow the doctor's orders for after care.
I don't understand your concern regarding pain meds, have you been denied pain pills in the past? No one in my family has ever been denied narcotic pain pills when needed - the doctors merely give a small number that will get one thru any acute pain, and they give none if the procedure doesn't cause acute pain.
Hi, Mary - Yes, a few friends have been denied pain pills (narcotics) over the past year. They were told this was due to the opioid epidemic. Luckily, I DID get narcotics during my biopsy, and all went well. Thanks very much!
I had a traditional liver biopsy in 2002 when I was diagnosed with NASH so at that stage, fibrosis. I didn't really had any pain. Just felt I couldn't get comfy on the trolley bed with discomfort in my right shoulder. So if this is the more painful biopsy I think you will be ok with tylenol (paracetamol). Just to bring you up to date I had no problems until 2016 when I was diagnosed as decompensated with ascites & HE and ascites. However after being prescribed medication I went back to being compensated. To progress, I continued until having a transplant in August this year. Good luck with your biopsy x
AmericanDem, check out the US facebook group "Cirrhosis and Liver Disease Support Group" on facebook. Membership has been exploding as of recently. always answers to ur questions. As matter fact someone asked question about very same thing. Answers were no big deal. One lady said she almost fell asleep and when they started packing up equipment she asked if they has cancelled procedure. They said "No. We're done." They just numb where they put in whatever into u'r neck. after that there are no nerves in the ein they use or the liver. Rest easy. But do check out the facebook group i mentioned.
Thank you! I did. The biopsy went well, thanks for your advice
I’ve had stents inserted through my trans jugular vein in my liver - the worst bit was the injection for local anaesthetic where they go into your neck - a slight stinging pain but very short lived. After that felt nothing - could feel the tubes being put in to start and taken out - no pain just a pushing or tugging sensation. As someone above said you have no nerves in your vein or liver so don’t feel pain.
When they remove the tubes they have to put a fair bit of pressure on your neck to stop it bleeding. I then found the dressing they put on to cover the vein was obviously secure and firmly attached and pulled a bit on the skin on my neck when I moved it (I’m a bit of a wimp when it comes to pulling plasters off).
I had no pain relief and didn’t feel like I needed any.
Have you had the results of your biopsy yet? And how was the experience? My hepatologist was undecided which way he would do the biopsy and discussed it with a colleague and ultimately decided through the abdomen. Apparently it's less safe than trans jugular but they get a bigger sample. Deb
Yes, I have received my biopsy results, and ... shockingly ... I learned that I do NOT have cirrhosis. Instead of being compensated Stage 4, it looks like I am actually not even Stage 1 yet. A little bit of fat in my liver, but nothing more. The doctor who originally diagnosed me may have jumped too quickly to his conclusion. I DO have some typical signs of compensated cirrhosis = slightly low platelets, slightly enlarged spleen, slightly enlarged liver and an MRE {Liver elasticity test} result that placed me in Stage 1-2. But I also have a few things that did not fit ... very low triglycerides, normal cholesterol and glucose, and a long history of slightly low platelets from a different origin (an auto-immune disorder). I am now very glad I insisted on a biopsy, which my hepatologist told me was the only definitive test for compensated cirrhosis.
The procedure itself went much better than expected, because I was given Verced to relax and Fentanyl for pain control. (I originally misunderstood and thought there would be nothing given at all.)
Yes, I read that the type of biopsy you’ll receive can provide bigger samples. I also learned that the trans-jugular type (mine) is the only way to measure portal vein Hypertension, an important predictor of disease severity. I was very lucky that no portal vein Hypertension was discovered. I am confident your doctors chose the best biopsy type for you and I wish you all the best with it. I’ll be anxious to learn your results, if you care to share them.
Thank you for asking/following up. I’ll be thinking of you! When is your biopsy??
That is fabulous new. I'm so pleased for you. 😊 My hepatologist is 99% sure that mine is autoimmune ( I have previously had an autoimmune disease) but as the steroids had such a huge effect on my diabetes I want to be totally sure that I definitely need them. I wonder how they got your condition so wrong. I'm glad you pushed for the biopsy, maybe there's something you and or the doctors can do to stop any progression in your liver disease.
I have been taking my ferrous sulfide twice a day and I'm optimistic that it will help with the restless legs. My biopsy is on Monday. I've got to be on the ward at 8am, biopsy at 11.30 then bed rest for at least 4 hours. I'll just be glad when it's all over and I can enjoy Christmas with my family.
Good to hear from you and I’ll be thinking of you on Monday! If your cirrhosis IS auto-immune, it looks like PBC might be a more-treatable diagnosis than PSC. I will hope that for you! Yes, Steroids are YUCK - miracle drugs, yet so many difficult side-effects.
One funny thing is that after my biopsy, they insisted I should leave after only laying down for one hour. I kept telling them I was sure it was 2-4 hours! They finally kicked me out after 2 hours - I don’t know about the UK, but in the US, their general goal is to get you out of the hospital in the shortest possible amount of time, no matter what, LOL!
Many good wishes on Monday!!
Heya American . I was a little confused in reading as you had mentioned that you were compensated but also mentioned that you have stage 4 cirrhosis. Stage four would be decompensated.
Do you mean stage 4 Fibrosis? I know this gets confusing. There are 4 stages on the metivar scale. F1 F2 F3 and F4 . F4 category gets the special extra name of cirrhosis. But within that F4 cirrhosis stage there are also 4 stages of cirrhosis.
Hey, Phoenix! You’ve got a cool name - kudos to your parents, LOL! Yes, you are right ... I should have said I was Dx’d with Stage ONE compensated Cirrhosis. Thanks for clarifying that. As it turned out, the biopsy showed I was mis-diagnosed, and wasn’t even bad enough to “qualify” for F1 on the Metavar scale ... I’m a 0.5! But I’m going to stay on the forum ... this was a wake-up call and I learned so much and now I care about all you guys! TC, all the best.
Thank you love. I do like my name 😊. Wow F4 to find out it's barely F1! That's probably the most amazing news ever. So very glad for you. If you dont mind me asking what did they diagnose the cirrhosis off of in the first place? Was there ultrasounds or were they just taking guesses lol. Jeez doctors are something sometimes. It's like " hey thanks for the heart attack doc". Thank you for the kind words. I tend to agree that we are a likable bunch here 😊. So please by all means stick around !
Hello again, Phoenix. Sure, I can definitely share. I first saw my GP after 3 months of constant nausea - he knows me well and was very fast and aggressive about testing, including bloods, EDG, CT and MRI with elasticity. A hepatologist who is the chief at a large, urban medical center then made the Dx, based on:
1.) Slightly enlarged liver
2.) Slightly low platelets
3.) Slightly enlarged spleen
4.) Elasticity test showing F1
While these four COULD indicate cirrhosis, I insisted on a biopsy. I think the doctor was too quick to Dx, and if he was not retiring in 6 months, I would probably issue a complaint against him. I had a good outcome, but the six weeks I thought I had Cirrhosis were terrifying. I have huge empathy for you guys. I now officially hate this disease and am doing all I can to bring it to people’s attention, get people to register as donors, etc. I think people with liver disease put up with an amazing amount of sh—, and I am privileged to now be an advocate.
Did the imaging mention anything about echogenicity or countour or fatty liver.. anything like that? I'm sorry if I'm prying I find this case very interesting and inspiring. Thank you so much for your advocacy and your raising awareness. It means so much.😊
No worries, Phoenix, “prying” is probably the best way we learn from each other. 😊 The imaging did not show any of the factors you mentioned ... the only unusual thing was the MRI/MRE result showing liver stiffness, or Fibrosis, at Stage 1. At one point, the hepatologist told me that “no liver test is definitive” (what?!) except for a biopsy, which is why I wanted to have one. As it turns out, my spleen and platelet issues are likely due to a past separate autoimmune disorder (ITP), which I told the doctor I suspected ... but he didn’t listen. 😖 I am incredibly lucky, I know I dodged a bullet, and will now do my best to raise awareness. Peace and health to you ...
Yea I keep trying to get my doctor to pay more attention to me when it comes to my spleen. My spleen is 24cm and my platelets are 10 thousand. That is not at all a commonality of cirrhosis or liver disease at all. Whilst cirrhosis can enlarge the spleen massive splenomegaly has a very short list of causes and cirrhosis is not one of them. The doctors all flat out agree with me on that yet they are doing nothing to find out whats causing it.
Yikes! 24 cm and 10k? Those are scary numbers, Phoenix. Your docs need to take some kind of action to see you through, right? Like, at least a platelet infusion? I hope someone will listen to you, be careful in the meantime (I am sure you are) ...
I wouldn't trust tylenol with cirrhosis. The liver metabolizes and cant do it correctly with the damage. The country is off the handle with the opioid crisis, people are now suffering in pain without proper treatement. Tylenol almost killed me and I took normal doses of it. Same because I couldn't get anything to help with the severe pain.
Hello, thanks for your reply and helpful warning about Tylenol. I see you are also from the U.S. Who knows how our opioid crisis (and subsequent refusal to give narcotic pain medication to patients who really need it), will ever be resolved. I guess one must simply hope not to have an accident or need surgery or be in pain, right? All the best to you.
That's true, I wish that was the case for us. I was injured in the Army and it caused all of this. No quality pain management, was on all sorts of OTCs was put on tylenol by my physician when she new liver issues ran in my family. It's nice that people who have their health get to make the laws for us. My doctor literally told me I cant give you anything because the DEA will be knocking down my door.
Your doctor’s words must have been so disheartening to hear. I am really sorry. Your situation is especially frustrating because it is an army injury ... you should be getting top-quality care. OTCs for severe pain? Nope. Again, so sorry. Wishing better times ahead for you.
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Since your hubby had varicies, and jaundice, is he still considered compensated? Can you move from decompensated back to compensated? Thanks again, very much ...
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Two new (or recycled) questions on my liver...
