Anxious wait for Liver Biopsy

[Sixties123]

Hi everyone , I posted a while back about my husbands blocked bile duct and ERCP. He had it done but his lft has always been out of range. Unsure of values as my husband wont ask (he says all he needs to know is better or worse !) We have been on this treadmill now for 7 weeks . After his Ercp he remained same jaundiced, itchy and so fatigued he has been like this for about 10 weeks all told . It's hard to watch someone who was always so full of life just lay on the sofa practically all day. We are so worried that he is being left too long with Jaundice and maybe this will have more of a negative effect on his liver. This all started with gallstones stuck in bile duct. He has had uss, mri , ct with contrast and nothing showing. He also had 'clever bloods' whatever they may be . Hes been checked for hepatitis and hiv and all number of other nasties and nothing comes up. What will come up on liver biopsy is really worrying us and also what if nothing comes up??? Then what ? We dont know if we want something to be found or not ! The consultant keeps asking if hes ever taken recreational drugs which he has never touched . He also asked if hes been on strong abx any time recently but last time he had some was 10 years ago for campylobacter. He has barely drank alcohol in the last year as we were trying to get fitter by cycling. The only drug hes had is his Astrazenuca vaccine which he had 3 days after ERCP . Also we do keep chickens and they get cleaned out regularly - dont know how relevant any of this is. He has his biopsy this Monday and then has to wait another week for phone call from consultant , I'm assuming it's for results? Sorry for long and rambling post but neither of us are in a good place and I look to the good people on this site for comfort /advice etc .. thank you in advance x

[Hidden]

What a horrible, worrying time you have been having. As the doctors seem to have drawn a blank as to what is causing the problem a biospy does seem to be the next step. Hopefully it will provide an answer to what is going on.

Apologies if you have told us before but what medical team is your husband under - gastroenterology? hepatology? Is he under the care of a specialist liver centre?

Please do give us a call on the helpline, even if it is only to let off steam!

0800 652 7330 Mon-Fri 10:00 - 15:00

regards to you and your husband

[Sixties123 in reply to Hidden]

Hi thank you for your reply. He is under Gastro team , as Consultant said he is not at the sending him to Newcastle stage yet ! I sometimes wish they had sent him to see liver specialist . Thanks for advice on help line . Cheers Lesley

[Hidden in reply to Sixties123]

If the biopsy does not give a definitive answer to the cause of the probem then it would definitely be good to push for referral to liver centre. Fingers crossed the biopsy will provide the answer. Keep us posted.

[Sixties123 in reply to Hidden]

Yes I definitely will do that . Thanks again for the support .

[Sixties123 in reply to Hidden]

Also ,do you think (and I know you are unable to diagnose) that the length of time with high biliruben levels is dangerous .?

[Hidden in reply to Sixties123]

It very much depends on what the level of the bilirubin is - and what the cause of the high bilirubin is. High levels generally make the person feel pretty rubbish - not able to eat etc so there is a general effect on the body. Certainly it is possible to have a high bilirubin for some time - eg people on transplant waiting list - but the quicker the level can be brought down the better

[Sixties123 in reply to Hidden]

Ahh I see ,thank you again . Honestly he has been seeing consultant and was hospitalised for 9 days and the consultant diesnt give him any information or advice at all . I get more help from you and the other people on here.

[Hidden in reply to Sixties123]

I know this isn't the time - but further down the line you may want to consider feeding back your comments re lack of communication to your local hospital's Patient Advice and Liaison service (PALS) They are usually pretty good at following up on this type of thing.

[Sixties123 in reply to Hidden]

Yes I think I will do this , but as you say it will need to be when we are in a bit better place . Thanks. Also as a side note : do you or anyone else know if anyone has had any success with medication for the intense itching. My husband cannot sleep for this awful itching . He is taking cholestyramine daily sachets and was given chlorphenamine 4mg (I think) , not working. He took over the counter anti histamine not working and then was given Fexofenadine 120 still not working . I think if he could get a good sleep he would be slightly improved. We also use Derma cool 5% which does.t help either. It's a nightmare .

[Hidden in reply to Sixties123]

I'm afraid I don't know of any other medications. Maybe someone on this forum will have some tips...

[busy946]

As you know I was in the same boat late last year. I was asked the same questions and had no clear cause for the ongoing issues either. All the biopsy showed for me was that it was full of bilirubin. The biopsy in my case ruled out lots of other problems, leaving just a liver injury to be the cause of the jaundice. The most usual cause of this is a drug injury. So it was surmised that it was Covid-19 that caused the injury as I was positive with symptoms when the gallstone got stuck.

Once everything else was ruled out I was treated with ursodeoxycholic acid and the jaundice quickly resolved.

I was under hepatology by that point. But if your husband hasn't had his gall bladder out I wouldn't be too quick to try and get switched from gastro as I am pretty sure I have dropped off the waiting list to have my gallbladder removed as have been discharged, not transferred back to gastro. Something I really ought to chase, but just happy to be out of hospital at the moment.

Hope all works out well for your husband.

Kate

[Sixties123 in reply to busy946]

Hi Kate , we asked about covid vaccine effects t on liver but he just ruled uþ out right! . So who knows.

[Steak]

Hi I was under an gastroenterology consultant after my own gp noticed my jaundice and blood test bilirubin was slightly higher so he referred me after 18 months nothing had changed so finally he referred me to a hepologist at leeds and was told my liver was badly damaged and after biopsy and scans told I needed a transplant it was a shock. I feel if I wud have gone to hepologist first things mite have not been as bad although maybe the damage had already been done but it wud have been diagnosed sooner. Good luck

[Sixties123 in reply to Steak]

I'm so sorry to hear this . That length of delay is awful. I really hope you get that transplant and get well very very soon . Thank you for replying. We feel like it's been ages for us but in the scheme of things we havent been waiting all that long really. If this biopsy does t show anything g we are going to push for liver specialist. Take care L

[Steak in reply to Sixties123]

Had my transplant 2yrs ago. Was only on the list 4 a few hrs it was amazing. Hope u get the answers u need soon

[Sixties123 in reply to Steak]

That's is fantastic! Heres to your good health x

[Kristian]

Hi Poppy

Unfortunately finding out what causes issues with the liver can sometimes take a while. It can very much be a process of elimination. It does though very much look like his consultant is doing everything he possibly can to try and get to the bottom of the cause. With all the other tests coming back inconclusive the biopsy is the next step and this could at least help identify if there is any damage in the liver that may be contributing to your husband's issues. Its actually really good that your consultant is looking to get back to you so quickly afterwards too. He really does seem to be keen to get to the bottom of things.

I appreciate the worries too, but it really is better to know what is causing the problem. That way you do at least know what you are battling with and for me being able to prepare and understand what may occur was actually really helpful.

In terms of some of the other points you raise. Consultants do sometimes struggle to understand how much patients want to know. Some are very much like your husband and just want to know if things are better or worse, whereas others are more like yourself and want to understand things a lot more. I'm like you in that respect and always wanted to know all the details. You'll generally find consultants are really happy to answer any questions you have but you do just have to ask them. However, I also appreciate trying to think if the right question to ask at a consultation when you are trying to take things in quickly can be pretty difficult. I know it was for me.

The other confusing bit, the "clever" blood tests may just be a typing error. My consultants tended to dictate their letters quickly into a dictaphone just after each consultation, this was then I'm guessing typed up by their secretary. So its quite possible that it is just just a typing or hearing error, consultants are not the easiest to understand at the best of times lol. I've had that lots of times, although must admit, dont think I've ever had my bloods described as "clever".

Hope the biopsy gets you some clearer answers. Good luck to you both.

[Sixties123 in reply to Kristian]

Hi Kristian , I really appreciate your response as I do with everyone on this site. It helps us to not feel so isolated and alone in all this. You have helped greatly for me to put things into perspective . I was just very unhappy at the way things were taking a long time . But I do appreciate now that our consultant is doing his utmost to get my husband back to health. I will,however write down a number of questions for my husband to take and ask . ( I feel if I were allowed to in with him I'd have asked so much more )its good to.hear I'm not the only one who needs to know everything so I can try to understand it . Once again thank you

[Kristian]

Yes, not being able to go and ask those questions can be very frustrating. I always think its much harder for relatives to go through these things than the patient. You're the ones that have to watch on, a little bit helplessly, from the sidelines.

From a timescale point of view, getting all the tests he's had done in that 7-10 week period is actually really fast. So it looks like his consultant really is on the ball trying to get to the bottom of things. Hopefully that will offer some more reassurance to you too.

[Sixties123]

Thank you for your support xx

[fleurette]

Hi poppyrocks. I had a very rare condition of the bile ducts called biliary papillomatosis which causes blockage of the bile ducts.

I had extremely high blood bilirubin (200)

last year with intense itching and fever.

I was very yellow!

I was hospitalised for over a month as I had an infection of the bile ducts (and very resistant germs) so put on intravenous antibiotics of all sorts. The itching and nausea were relentless!

After being given several drugs and creams,I found that only ice packs provided temporary relief and helped me to sleep for a few hours. Please ask your husband to try them,even though not really practical.

The the only thing that finally stopped the itching (instantly) was the installation of an internal /external biliary drain which I lived with for 8 months until my transplant in October last year.

I sincerely hope he finds a solution for the itching,I know how miserable it can be to live with.....

[Sixties123 in reply to fleurette]

Hi fleurette , thank you so much for sharing your story with us . And what a story 😔 xx it really is quite a scary thing . I'm glad to hear that you are doing better and that your transplant was successful . I will tell him to try ice packs thank you . I intend to update everyone who has kindly replied as soon as we have any news . Thanks again xx