Finally Seen Specialist

[Lisa15]

I went to see the specialist for results of my endoscopy. She said everything looked good but my levels are high and that goes with pbc. She wants to do a liver biopsy to make sure nothing else is going on and may do a scan of my pancreas because of pain in middle upper abdomen. Needless to say this is stressing me out. So I go next week for biopsy. Has anyone any advice on having biopsy?

[LisaC22]

Hi Lisa. Same name & same situation as me! My consultant believes I have PBC but thinks I may also have an overlap with Auto Immune Hepatitis due to one of my blood readings (ALT) remaining high. The others have come down thanks to URSO. So he said he would like me to go for a biopsy to be sure. I was very nervous. There are risks but I had additional risks as I have quite a few benign tumours in my liver (apparently not connected to PBC). Anyway I had the biopsy last Friday. I only got 3 days notice which was good because it meant less time to panic! You need to be awake for a liver biopsy as you have to hold your breath at a certain point. I asked to be given as many drugs as possible to calm me down! Best thing I ever did. It really was a breeze. I remember very little and could not believe when the nurse told me it was all over! I stayed in hospital overnight but most people do not need to. I did because of the increased risks in my case. I did have some shoulder pain afterwards which I was told to expect but I only took 2 paracetamol & didn't need any more. I took it easy for the next 2 days & feel completely fine now. So if you do have one, try not to worry. I searched this site in advance for others experiences & 99% will tell you it really is not that bad. Particularly if you take sedation. Best of luck & keep us posted on how it goes.

[loveliesa2 in reply to LisaC22]

Hi from another Lisa! Would give same advice take some sedation it will keep u calm throughout I didn't find it too bad at all and it was over very quickly. The pain afterwards I found quite bad but was given pain killers by injection and into vein and these worked well. Bit tender for about day after but that was it. My advice is not to hesitate on asking for pain killer after it and if seems like it's not working ask for stronger one. But main thing is to relax the actual biopsy is really not too bad. Best of luck.

[Lisa15 in reply to loveliesa2]

Thank you Lisa and Lisa for your advice! I feel better hearing your experiences. She did say I would get sedation to help relax me and pain medication afterward. I am trying not to worry so much. I will keep you updated.

[butterflyEi]

My biopsy was done without any medication and as day surgery. I felt fine after the procedure. During the procedure the doctor placed me in the best position for him to do the procedure with as little discomfort as possible. However during the procedure I had a sharp pain which I think (sorry a bit of a while ago) was in my right shoulder. Since the biopsy I have watched the video which is on the PBC website where Professor Neuburger states that if you feel nervous ask for something to just relax you. It is worth listening to this video as I found there are other helpful gems and words of wisdom particularly when Professor Neuburger is speaking. It appears to be quite an old recording but is still valid today.

My personal experience of the biopsy is from over 10 years ago, things may have changed.

If you have concerns telephone the Foundation they have a wealth of experience and are very helpful.

Best wishes, try not to worry - easier said than done I know - and make sure you rest the required time after the biospy. If you are having it done as a day patient take a book or whatever you like to do during the waiting period after.

[Hidden in reply to butterflyEi]

Hello butterflyEi.

As you probably know now I've never had a biopsy. It was never suggested I have one as I was diagnosed with PBC later 2010 due to itching and at the time fatigue (still itch to this day) plus abnormal bloods relevant to liver and also the antibodies for PBC (AMAs) so a biopsy isn't the norm here in the UK where I am.

I have wondered for some time about others who have to endure a biopsy how on earth they manage to remain still afterwards for what I ahve read is around 6hrs. I cannot sit about myself for very long during the day as I start feeling prickly and uncomfortable and start to fidget.

I am now glad that I have never been asked to have one as I've always been a person who wants to know what is going on and even when I had my children, I refused gas and air and any other pain relievers during labour as I wanted to be in control. Moreso when I had my 2nd child, I had said I was going home after his birth and knew if I wasn't fully aware I'd probably have to stay in hospital longer.

[butterflyEi in reply to Hidden]

Hello Peridot

Wow! I do not remember being still for 6 hours. Yes during the procedure I remained still I was then taken back to the ward where I rested but I was home within 6 hours so most certainly did not remain still - doubt I could do that. Perhaps if my bloods had been more specific they would not have done the biopsy. I do live in the UK.

With all the horror stories that there are about patients on the ward being given wrong medication I can most certainly understand your need to be in control and aware.

I believe I was given the biopsy because they could not decide what was wrong with me. I knew I was poorly and had been for quite some time but even then it was the specialist who gave me the diagnosis.

I have always enjoyed a drink in the pub with friends, on being asked if I was a drinker I had said yes and from there on in until diagnosis I believe they labelled me an alcoholic. Certainly my GP at the time treated me with disdain. Had I been an alcoholic I think I would have had more help !

I have since listened to Professor Neuburger's presentation on the PBC website where he says something like you could drink a bottle of vodka a day for 20 years and it would not give you PBC. That did help me with the guilt.

Like you I continue to itch, mine is the opposite to what you have reported in other posts. If I do itch at night I am lucky to sleep through it with the help of drowsy type anti histamines. However the itchgets me down and makes me grumpy. The other day I caught myself biting my arm - once I realised what I was doing I went and found an ice block!

Best wishes

[Hidden in reply to butterflyEi]

Hello again butterflyEi.

I agree there, it does seem that certain health problems are treated much quicker than with problems like PBC for eg.

These patients seem to get far more help for their self-infliction if that is what has caused it.

The one thing that I still feel sore about regarding PBC and someone who does have a problem with alcohol that is known by the medical profession is that if that person was to cease drinking I am certain even though they'd still have damage from alcohol it would just halt (even if they continue with a compromised life) whereas someone with PBC we hit a certain stage and there is nothing we can do about it.

I was asked twice by the same nurse in 3 months at my old GP surgery how much alcohol did I used to drink when I went for the bloods! The 2nd time I just felt like telling her I used to be an avid drinker (but didn't!).

[PBCFoundation PBC Foundation]

Hello Lisa,

I have sent you a private message.

Regards

PBC Foundation