Hi, This is my first post. I am from the states but I have not be able to find anything like this site so... I find myself suddenly being told I need this biopsy due to some bad blood work and ultrasound. Everything seems to point to AIH plus a fatty liver. I am terrified of the liver biopsy so can anyone that has endured this procedure please tell my how you felt, during and after? And any thing you can tell me that you wish you would have known before the biopsy that nobody told you. I really have anxiety over this. I am going on 2/22, so two weeks from this Thursday! Thank you
Liver Biopsy, how bad is it? - British Liver Trust
My hubby has had two liver biopsy's - one normal through the side and one transjugular one. He has a diagnosis of auto-immune cirrhosis. Neither of his biopsies caused him any pain or discomfort - the area is normally numbed with a local anaesthetic and the procedure is generally over in about 10 minutes. All he was aware of was a slight pulling sensation when the samples were actually taken. The most annoying bit for him was the 4-5 hour laying down afterwards as they need to monitor you in case of possible internal bleeding. He has always said he'd rather have any number of biopsies over a single endoscopy (which he's had many, many, many of).
As regards what would you have liked to know before - use the loo so that you don't have to try and use a bed pan on the ward whilst laying flat and take something to pass the time - a book, tablet or whatever to keep you entertained.
You will be fine and fingers crossed with a decent biopsy sample they will be able to finally confirm your diagnosis.
All the best, Katie
I have had a liver biopsy, don`t worry as it is not too bad. You are on a bed/trolley and they have a ultrasound rigged up so they know the biopsy needle goes in the best place. They give you a local anaesthetic on your ribs, little prick. The biopsy is a sharp pain with a " clack " sound but takes maybe 1 second. You get a ache in your shoulder afterwards when you are on a ward, keep you in for 6 hours to make sure no problems. Then out you go, Bit sore but not too bad.
Endoscopy is interesting, you just have to swallow the camera. I didn`t have a sedative as I wanted to be aware. A lot of gagging lol but all okay. Quite an experience usually done to see if you have varices.
Regarding liver biopsy, if they want to see your cirrhosis, fibroscan is the latest thing all done on a score, lower the better.
Allan, Hep C warrior, thanks to NHS I have won ! Harvoni rules.
my son is getting his biopsy the transjugular method on Friday - they drained 5l fluid last week and when taking daily bloods yesterday they have told him the fluid is coming back... he was told to prepare to stay overnight? i know he has issues with low platelets and think they are just being over cautious?
katie can i ask how long after the actual biopsy did your hubby get diagnosed? are they likely to tell us - diagnosis, what biopsy tells them and what treatment he will get ? i believe there are different stages of cirrhosis, sometimes google can both be a friend and a enemy with so much information .
Souppie good luck
Hi I have AIH and I was diagnosed before biopsy I think, but they had ruled out many other things first. The biopsy confirmed what they thought. Just to be clear, there are stages of fibrosis, but once you get past this, it is cirrhosis and cirrhosis is not staged. Cirrhosis exists as compensated, meaning that the liver is still performing it's functions well or decompensated, meaning that the liver is struggling to deliver all of the functions (over 500) that it is intended to perform.
Many people live with cirrhosis for many years 20+ or more and it is managed (with AIH), for others it is now becoming possible to reverse cirrhosis (not yet seen in those with AIH). Please be aware that although some sites seem to be fully researched, some of their information is inaccurate/out of date/ incomplete, so not totally reliable. I have been diagnosed with AIH for ~10 years now, so have a pretty good idea of what is involved, but am sure I don't know everything yet!!
thank you MC can i ask how a decompensated liver can become compensated?
he is showing signs of ascites again having had 5l drained last Thursday? he is only 27 and is both a non drinker or drug taker. we are literally 13 months of illness and he was admitted to hospital with acute gallbladder infection chest infection severely anemic got a transfusion / platelets and we honestly thought that was that, we know gallbladder can come out so when he started symptoms again we all assumed naively it would be removed, mention of liver cirrhosis the ascites and now the thought of the biposy results has my mind in overdrive......
I'm afraid I can only comment on my own experience of this which happened very recently. I was put on diuretics ( a relatively low dose AKA water tablets) and as the swelling reduced- from the ascites, my bloods also returned to normal. I should say my bout of decompensation was brought on by an infection (I am a rare and difficult case according to my consultant) and this was treated with a high dose of steroids, in addition to the diuretics.
As the bloods improved, the ascites reduced. I also took to walking at night, no easy feat initially as I looked pregnant from the fluids, which seemed to help.
They did initially treat me with steroids for a month, but when the steroids were reduced to 0, my bloods were back to where they had started at the beginning of the month's steroids. This meant when I was put back on steroids they started me on a higher dose and for longer before being reduced down. This is just to emphasise that they can't always get the dosage of meds right initially, but in the end, I am back to being compensated. 6 months after the initial infection, I finally felt normal, so it may take a while.
I gained about 5Kg in weight equivalent to 5L of fluid, but I was told that I would need to have higher amounts of fluid present before they would consider draining.
I'm sorry you are having such a hard time of it, but I must say at my initial diagnosis, I found one of my registrars very helpful and he even ran off helpful info for me to read while I was staying in hospital. If you can find someone like that in the hospital, it will hopefully put your mind at rest and stop you get mixed info from Google (if you have tried that) My registrar told me he wished more people would ask questions like I did. I also made sure that I listened in when I could at the nurses' station at changeover to hear what they were saying about me, which was useful also (it pays to be nosey about your health) Good luck and I hope things improve soon
thank you - its actually a relief to know that a decompensated liver can revert to compensated as all we want is if it cant be "fixed" that we can possibly get to a point that yes he has a cirrhosis - but with no side effects... he has been on steroids most of last year, i need to remember and ask them did they just mask the symptoms as soon as he was down to literally 3 a day the fevers and sweats all started again.. i have told him i will come to all his appointments and i will add compensated ect to my ever growing questions.....
maybe naive as reading back i kind of make it simple however having watch him suffer with one thing or another - hope is all we really have
All of us started on this journey knowing very little/nothing and the problem at the appointments is, even when you have someone with you, it can take a while to digest the information that they have given you. By the time you realise what they have said, you have yet more questions and then have to wait until next time to ask them. I wouldn't say you were naive, just like the rest of us you want to know more so that you can be realistic about what to expect. It's great that you are able to go to all his appointments because it really is difficult as the patient trying to absorb everything that they are saying. If you have a list of questions and work your way through them, then you should get a more complete picture of what is going on.
It is great that you have hope and don't underestimate how much that will carry you forward on this journey. You are very welcome, by the way, and I am glad that I have given you some relief. Any other questions, please ask and I will try to help if I can.
You are doing more than you realise by being there for your son and coming on here to get information. That will be giving your son courage too.
All the very best to you and your son.
Hi MC1189, They are pretty sure I have AIH and the biopsy is to confirm. I have a very enlarged spleen from my liver not working properly from the AIH. I wonder if you had any issues with your spleen. I have been told by my doctors my spleen will shrink with treatment. Is there any info you could share about this or did you not have this symptom. What symptoms did you have? I am considered stable at this time. My biopsy is in two weeks.
My spleen was not enlarged, so this was never a factor for me. I did not have a fatty liver either, so again how the AIH affects me will be very different to how it affects you. I have the rarer Type 2 AIH (more typical in teens) , but nevertheless for the last 9 years it has been managed well through aza and occasional steroids.
I initially was diagnosed after finding that I was fatigued more than usual. Also after an exercise class that I did every week, I thought I was having a panic attack, and suffered from shortness of breath. This alarmed me and I went to the docs, having also noticed pale stools and dark urine for about a week. Not long afterwards, I was jaundiced. Initial bloods were ~ 1000, so not good.
Good luck with the biopsy, it really is straightforward and nothing to be alarmed about. All the best with getting a clear diagnosis
I really wouldn't use the word 'endured' as it wasn't at all bad.
Mine was a couple of years ago when I was quite ill and also, like you, very anxious and worried.
The important thing is for you to be completely honest and tell them just how anxious you are. That way they can give you adequate sedation, you will be relaxed, procedure will be pain free and you will hardly even remember what happened.
All I can remember is a small scratching in my side as an injection of a local anaesthetic was put where the needle was going, some pushing in my side and then it was over. I recovered quickly from the sedation and then had to lie flat and still for a few hours.
I'm sure you will be fine, please let us know how it went.
This is a link to the British Liver Trust website and a section on the common tests in liver disease. A liver biopsy is explained on page 34.
Thank you for a quick reply. I am counting down the days and getting more worried as the time gets closer. I have been dragging my feet over this biopsy so the doctor knows I am afraid. I have had some changes that has made it so this has to get done NOW. Plus my spleen is very big and sore. I want to get this over with and start treatment.
Thank you for info,
Katie and Jim sum it up pretty well, but here's a link to a response i did to a similar post a few months back as it has a few useful additional tips you may find useful.
Hi Souppie I am also from the states, Pa... I just had a liver biopsy last week on Tuesday. I like you was scared to death and found surfing the internet looking up anything and everything I could and watching liver biopsies on you tube. That's the wrong. thing to do, so please don't do that. It only makes matters worse.
I didn't find it all that bad. I told them ahead of time I was a nervous wreck, they gave me kinda like a 'TWILIGHT SEDATION' plus something to relax me. I was awake but didn't feel a thing at all. They told me everything that they were going to do, but honestly I didn't have any pain or problems afterwards.
I also had a breast biopsy last month and found the liver biopsy nothing compared to that. And trust me, I'm a big baby when it comes to needles and pain!!! I promise!
I hope this helped, best of luck to you
Hi karen... I was messaging you back and was almost finished and somehow I lost the whole message.
I find it hard to text on this forum on my phone, it's really slow and Keeps texting the wrong words and my phone is flashing almost.
Maybe its bc we're In the states... But but i you feel comfortable and would like to exchange numbers or maybe emails would be safe, I could text you and explain everything without losing my whole message. Lol
Heres my email, that's probably safer...
Hope to exchange information soon...honestly it's nothing to worry about. But ii was the same way. I over thought it and made myself sick with worry.
A liver biopsy is a relatively painless procedure. The most painful part for me was the initial injection of “local anaesthetic” which felt like a wasp sting. Once that had began to take effect all I could feel was things that just felt weird. I write a blog about my cancer journey and my biopsy was written about at the time. 1liver1life.wordpress.com and the biopsy “special” was entitled Tests, Hope and a Trip To Florence, because as with everything on my journey nothing is ever straightforward. Don’t worry and hopefully the results go your way.
Welcome to the forum.
We do have some information on 'liver biopsy' in our publication 'Liver disease tests explained' from page 34 onwards. Please note, this information was written with UK NHS processes in mind. It is also 10 years old and will be updated shortly.
As you have already seen, our brilliant forum members have shared their experiences with you here.
We would also suggest that you discuss all your worries and concerns with your medical team prior to the procedure.
Additionally, we also have an updated publication on Autoimmune Hepatitis, here is the link;
Souppie I had a liver biopsy 10 months ago as they suspected AIH. In fact the biopsy showed it was pretty advanced NASH & not AIH despite all the other tests leaning that way.
I felt ill before the biopsy & my liver was inflamed & sore & I was scared of the biopsy.
I had an abdominal biopsy with local anaesthetic. The local stung for a few seconds - no worse than the dentist.
I was surprised both the local & the biopsy were done so high up - it felt through a gap in the ribs.
The biopsy was almost pain free.
However about 5 or so minutes after it was over everything seemed to go into spasm. It was painful - like intense trapped wind. It happens sometimes. It didn’t mean I was bleeding or anything awful & once that was explained I relaxed. It eased after 20mins & was gone at 30mins. I’ve had period pain worse ! It was shock & fear that made it harder which is why I’m going into detail here.
Like everyone else then there is the boredom of lying flat for hours.
At home I felt exhausted but again it was the result I think of the fear not the procedure.
The next night we had dinner with friends & we had decided not to cancel or tell them & I wish we had cancelled. I wasn’t in pain & I didn’t feel any sicker I was just a little fragile & worried about what the biopsy would show up.
Good luck & let us know.
NASH is a form of fatty liver where you have damaged the liver - it is inflamed & ‘scarred’. In my case caused by obesity & way too much sugar. In my case it is so advanced its on its way to cirrhosis. There is no medical cure - life style change - not as easy as it sounds. In 10months I’ve lost 24kilos & started serious exercise - swimming gym & Pilates. My fibroscan result has much improved & my liver consultant feels that if I keep on this track in a year my liver will be normal. So I’ve been v lucky. I hope you will also be lucky.
Hi-you sound exactly like me! In the states too and I was very nervous about my biopsy. I wrote a similar feeling nervous post here in January and the incredible people on this forum made me feel much better. I had to be at the hospital at 7am for an 8am biopsy. Everything was great-they said I could have my choice of two types of anesthesia-you're awake for both but one makes you more woozy. I waffled then picked the woozy one. The doctor was a surgical fellow [it was a teaching hospital] and had done hundreds of these already. They set you up and he marks the spot. The team then stops for a safety check to verify everything and then the biopsy happens. He went in twice for some reason but it was over before you know it and no pain whatsoever. Went back to the prep area for about two hours and went home. About 2 hours after that I walked to my child's school to pick them up. The only downside was the patient in the "stall" [room?] next to me was a loud goofball and very demanding on the staff. I was trying to relax and recuperate and I found him so annoying.
I found the staff to be very compassionate and highly skilled. Remember they do this several times a day, every day of the year.
Best of luck to you.
Souppie, finally someone from the states! My husband has NASH which is a nonalcoholic liver disease. I don’t know much about liver biopsies as they have not ordered one on my husband yet. He had had ultra sounds, blood work, bleeding esophageal varicies. I hope someone can give you some information on this site. Good luck. I hope everything turns out well.
I had a recent liver biopsy and i too was afraid of what i would feel however surprisingly It was easier than expected. Before the procedure of course i was really nervous therefore i was given IV meds to relax once I was relaxed and the anesthesiologist came in and gave me anesthesia I was asleep when I woke up there was no discomfort only a little pressure at the site. I was instructed to relaxed after the procedure and resume normal activities the following day of course nothing strenuous. All was uneventful and painless. I hope this helps. Good luck and blessings. Veronica