PBC, AIH liver biopsy: Hi Last month... - British Liver Trust

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PBC, AIH liver biopsy

Bevmc profile image
22 Replies

Hi

Last month Inwas diagnosed with PBC after further scans and bloods I have now been told I have AIH too. I am having a biopsy to determine which is the more prominent. I also have abnormal lymph nodes on my liver which are being investigated, initially by MRI.

I am anxious about the biopsy, I know it's quick but I just feel squeamish!

Can anyone share their experience or give any tips. I'm feeling a little overwhelmed.

Thanks

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Bevmc profile image
Bevmc
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22 Replies
Bolly profile image
Bolly

Tips re the biopsy or the AIH/PBC crossover.?

Bevmc profile image
Bevmc in reply to Bolly

Either, I kind of got my head around PBC but have been thrown by what having both means and is a biopsy as horrid as I imagine?

Anyone with any tips on any of it would really help

AyrshireK profile image
AyrshireK in reply to Bevmc

Although i've not had a liver biopsy myself (I have had one done on a breast lump though). My hubby has had two liver biopsies one via the usual through the side route and also a transjugular one. Neither caused him any issues, local anaesthetic is used so hubby never felt anything other than a slight pull (during the transjugular one), he had no pain, just laid back and got it done and he had no lasting pain afterwards. He was an inpatient for both though some people go in just as day patients.

The most trying bit is the several hours lying flat afterwards - hubby had to do so for about 4 hours with observations every 30 minutes - this is to protect against a potential bleed and the obs make sure there isn't any thing untoward. The timing for this seems to vary from hospital to hospital.

Hubby has previously said he'd rather have any number of biopsies rather than a single endoscopy so they arn't that bad.

I am sure you'll be fine, it is a very routine procedure and with the precautions they put in place there should be no issues.

All the best, Katie :)

Bevmc profile image
Bevmc in reply to AyrshireK

Thank you x

Steak profile image
Steak in reply to AyrshireK

Hi just back from jimmys re liver transplant assessment had a long day of test on the liver scan it picked up a blockage so have to have a cat scan. 😩. Also dietitian picked up i wasn't eating enough so I need 2 eat more especially b4 bed. Nobody has mentioned this in the last 18 months. So it stuffing my face time ha. How's hubby doing. X

bestiebabe profile image
bestiebabe

I had a liver biopsy a few years ago, I have PBC too. It is nothing to worry about, I am terrible but it didn't hurt at all. Just local anaesthetic and all you feel is a dull click. It is over really quickly. The worse part is lying in bed for hours to make sure that everything is ok.Take books music etc as you cant move. Good luck

Bevmc profile image
Bevmc in reply to bestiebabe

I feel better now, it just sounds horrid and I'm squeamish lol

Thanks

in reply to bestiebabe

Hi Bestiebabe

I've jst come across your note stating that you have PBC!

I'm currently under investigation for possible non acholic PBC which all of my blood tests are indicating too! Can I ask what your symptoms are?

I'm having a fibroscan on the 23rd of this month with possible MRI on bile duct following.

How are you coping with PBC? I'm currently having itchy skin, achning muscels and hot and cold turn plus the discomfort under my ribs has increased. Do you get any of these symptoms and how are you being treated.

Regards Slaines - female aged 66

findasolution profile image
findasolution

Hello Bevmc

It is my understanding that liver Biopsy is regarded as the gold standard for the determination of AIH and it is unlikely that it can properly be diagnosed with any degree of certainty without having one done.

When I was initially diagnosed with AIH about 3.5 years ago (unfortunately the accompanying high degree of fibrosis has since advanced to decompensated cirrhosis) it was performed as a day patient at the local NHS Trust Hospital under X-Ray guidance which was reassuring and personally I found the procedure painless and easy to tolerate. However , as others have already advised you; the biopsy procedure which only takes a few minutes, is followed by a lengthy period of laying down and still ( I seem to recall I had to lay on my right hand side to press on the liver) on a hospital bed which is I understand is to reduce the minute risk of any internal bleeding. In my case I was throughout this period of laying still linked up to a couple of monitoring devices and the day patients' ward nurses were very attentive and checked on my well being every half hour or so. Personally I found this four hours or so seemed to pass quite quickly and ended with the ward caterers bringing me a cup of tea and a plate of salad and sandwiches. However the NHS insists that you will only be released into the care of another party and have someone at home or living nearby who can keep a check on your well being during the following 24 hour period..

We all react to clinical and theraputic procedures in different ways but if your own experience is similar to my own then you have very little to fear and by having it done it will at least give you the comfort of knowing that your doctors will then be better placed to properly diagnose what liver disease(s) problem you have and to prescribe the appropriate therapy / treatment.

Good luck

Bevmc profile image
Bevmc in reply to findasolution

Thanks so much

Wendy29 profile image
Wendy29

Hi, I have PBC/AIH - and have had three liver biopsies now - not pleasant but to me the worse thing about it is when the person doing it is feeling for the gap between your ribs - ughhh! But it's fine, just have to thank our lucky stars we haven't got anything worse, smile and get on with life! its not always easy and other people don't really understand it - but how lucky are we that we have the advantage of being online and connected with other people experiencing similar things? Not s for my mum who had this same disease thirty years ago!

Bevmc profile image
Bevmc in reply to Wendy29

Thanks, it's difficult for me to get my head around let alone the rest of my family! I am very grateful for this forum

Bevmc profile image
Bevmc

Do they only treat PBC & AIH or just one? I have been started on the acid for a month but have been told it may change.

W_larks profile image
W_larks in reply to Bevmc

They treat both xx

bestiebabe profile image
bestiebabe

Everyone is different. I had PBC for 18yrs before I needed a liver transplant, last January...it can take varying amounts of time if ever to get to that stage. I have been great following the transplant but still have PBC,which can flare up again at anytime. Try not to worry, easy for me to say, but the docs will treat your conditions together , not separately as far as I understand.Hope this helps

Bevmc profile image
Bevmc

Thanks, I'm going to try and not worry, this forum helps as not many people know anything about liver disease.

Happy new year x

Brummi profile image
Brummi in reply to Bevmc

I'm sure all will be allright. Liver diseases affect people different ways PBC is one. Doctors can diagnose it, treat it accordingly. Stress is a bit of a problem so try to be stress free. You could be worrying over a problem that is not there. There are a lot of good people on here, take care and have a happy new year for 2015..

Bevmc profile image
Bevmc in reply to Brummi

Thanks

Bolly profile image
Bolly

Hi Bev, there are a number of people with PBC/AIH crossover on this Facebook forum facebook.com/groups/AIHorgUK/ who can answer all sorts of questions and give support and tips. If you feel very anxious about the biopsy ask your GP for a low dose sedative to take on the day. I've had 2 biopsies and the second was only worse than the first because I new what to expect, lol! I took a tiny dose of Diazepam (never taken it before or since) and couldnt care less - chatting to the porter and the technicians about all sorts! Everyone is right, its the lying down after for hours that is the most tedious.

Bevmc profile image
Bevmc in reply to Bolly

That's a great idea, the sedative, I'll definitely do that. Thanks x

W_larks profile image
W_larks

I'll be honest it's not fun but its over in seconds!! You will need to lay still for about 4 hours after un the hospital before you go home but you get a cuppa and toast 🙂 so take your phone or a book !! I would take a a nice soft pillow for the journey home to tuck under your arm it helps with the bumps 🙂 good luck. I also have PBC /AIH overlap xx

Bevmc profile image
Bevmc in reply to W_larks

Hi, thanks for replying but I wrote that post 5yrs ago! So much has happened since, way too much to keep up with. 😀

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