Hi i'm Lynda, ive recently been diagnosed with cirrhosis, ive probably spelt it wrong.
I had a CT on my abdomen to check my bowel, and this was found. I also have a cyst on the liver and an enlarged spleen. Ive had an ultrasound, and it is very fatty, and enlarged.
I have been referred to a specialist by my gp, what happens next? What tests are they likely to do? My LFT was normal at the time. I did use to drink a fair bit, but i'm also obese so I guess it could be either that has caused it or both?
At the moment i'm just plain terrified, your stories on here are so brave and full of encouragement, thank you. Also I have Atrial Fibrillation of the heart so I'm on anticoagulants! I guess they will have to be stopped? Possible bleeds etc.
Anyway thanks for reading my post, and look forward to hearing from you. Best wishes, Lynda
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Hi Lynda, sounds like you've been through a lot very quickly. I have a very similar story to yours. A large fatty liver was picked up by ultrasound (GP thought I had gallstones). I was then referred to a Liver Specialist as they thought I had NAFLD. I too have Atrial Fibrillation and have had a stent fitted, so usually take anticoagulants and an anti platelet drug. I have been off anticoagulants since July as my EP/Cardio thought they were the cause of what turns out to be symptoms from the Liver.
I thought at the time it was due to the drug Amiodorone, (prescribed for AFib after 2 failed ablations), but I went with his thoughts rather than my own and stopped rivoroxaban (Noac) I worry about my stroke risk and am hoping to be back on anti coagulation within weeks now. Hopefully you are not on Amiodorone?
At my first Liver appointment I had a Fibroscan - very like an ultra sound, non invasive, not painful at all, which gives them a reading of how stiff the liver is and if the likely hood is Cirrhosis. Mine was quite high at 20 (normal range is up to 6-7 I believe), so they arranged a Liver Biopsy which I had yesterday. My LFT was normal, but AST/ALT were inverted results. All pointing to Cirrhosis unfortunately. I also had an endoscopy to check for varices,
My liver specialist says the only way you can truly diagnose Cirrhosis is with a biopsy, there is a possibility the scans could be false positives (here's hoping hey) You will have to stop Anti coagulation/platelets for a week before, and 48hrs following the procedure.
The biopsy was fine. For me, better than going to the dentist..! The hard part was laying flat for 6 hours afterwards. My back has seized up and will take a few days to recover. The biopsy site is fine, no pain at all today.
Atrial fibrillation will complicate a lot of the liver stuff, but it does also mean they are inclined to move things along quicker because they know how much it can affect the A-Fib and what medication can be prescribed because a lot of them can affect liver function.
I've never drunk or had hepatitis, and my Cirrhosis (if the biopsy shows that's what it is) will be caused by a drug prescribed to treat A-Fib. Amiodorone. One of the side effects is Liver Toxicity. I am also overweight, and while the Liver guy said, yes that can affect NAFLD, it would not have 'caused' Cirrhosis.
Try not to be too anxious (easier said than done I know). I'm frightened too, but at this stage I just want to know what it really is and then we can make a plan for treatment/management.
The scary part is the stage you are at now. Not knowing. worrying about what may/might be and the outcome. I initially thought Cirrhosis was an automatic death sentence. It's not. A lot of people manage the symptoms with a liver that compensates well for the damage done to it, for a long time. If it's fibrosis, not Cirrhosis there are lifestyle ways to halt/limit the damage.
It is all complicated by Atrial Fibrilation, but that too can be managed. Try to stay positive, hopefully you won't have to wait too long for Liver Specialist appointment and they can start you on the way to getting well and the help you need.
This forum is a great place to get help and advice. Lots of folks very experienced and also people around who care and will take the time to talk and respond. You are not alone with this.
It's a scary time, but information is the way to move forward. Once you truly know what you're dealing with, things wont feel so bad. Good luck
Hi Ange, thanks for taking the time to reply to me. Yes we have very similar stories both with the liver and AF! No I'm not on Amiodorone, I'm on Flecanide, Bisoprolol and Rivarboxan. That's awful what drugs can do to our bodies! I've recently come off my statin as that can cause liver injury.
I've been referred to Gastro? Hopefully I actually get to see a Liver specialist? Haven't got a date yet, so waiting on that. Bad enough having PAF without liver problems too
I hope do hope our problems are a false positive! how great would that be!? I will have to hope that the biopsy is ok, and also yours, an anxious time. Are you in the UK? What hospital are you under? I live in Devon so I guess i'll be going to Plymouth hospital.
It certainly is scary! hopefully all will be manageable and livable, even if not curable. Good Luck for your results when you get them, would be lovely to hear from a fellow AF sufferer, is yours PAF? I was diagnosed last November, that was a shock as well lol
I'm in Leeds, so AF is treated at Leeds heart center at LGI (have had 2 ablations & angioplasty there). Am seeing Liver specialists at St. James in Leeds too. I was only diagnosed with PAF Jan 2016. Had a roller coaster of a year, in and out of hospital, loads of procedures, cardioversions. I've had to give up work, it's really debilitated me. They've fixed right chamber, but my left chamber has completely abnormal electrics. Been on all the drugs you are on at various times, and each of them come with their own side effects. It's a lottery which one will work and not cause bad side effects.
Amiodorone is known for it's toxicity, but it works for controlling AFib which is why it's still prescribed. It's just brutal when it causes something life threatening like Cirrhosis.
I started out with Gastro who organised endoscopy and then referred to Liver Specialist. With all your assorted problems found on CT they are probably best bet to start with.
I'm sure Plymouth hospital will be good. Must be one of the main Devon hospitals. Hope you get some good news and don't have to wait too long for appointments. The AFib is a shock, everything else on top just makes it more difficult. Hopefully your AFib is stable at the moment.
Hi Ange how are you doing? Yes my AFib is ok at the moment thanks, sounds like your've been through a lot with yours!? Hope they fix the other chamber where its misfiring.
I'm hoping to hear about my appointment this week, the specialist is reviewing my referral I was told. Good Luck with your Biopsy results, I do hope that you get some good news.
How was the endoscopy when you had it? Did you go for sedation? I definitely will, I had one many years ago and they didn't give me enough, I started pulling it back out! lol a most unpleasant experience, that i'm not looking forward to repeating.
Ive been reading posts on here, some lovely people, so brave! Very encouraging, makes me realise we all have to seize the day when we're able. Well hope this finds you well?
Hi Lynda, I'm doing OK. Biopsy site healed with only some minor discomfort. Just the wait for results.
I'd wanted to have my endoscopy with sedation but because I also have sleep apnoea (I know I should be put down really), I had to have it without. I'd had a horrid experience many years ago and was dreading it. It was OK, I didn't fight it all all (which I had previously). I don't know if the doctor doing it was more experienced, or if it was the nurse stroking my hair whispering in my ear letting me know what was going on, but I've lost the fear of them now. You do whats right for you, and if sedation is offered, take it and enjoy it.
My AFib is stable at the moment, but I still have the drug (Amiodorone) in my system so I think that's holding it for now. I'm on day 74 without it (I think), so we shall see after about 120 days. I reckon I should get Christmas out of the way before it kicks off again. Then we see what they can do with the left chamber. The choices were not tempting last time we discussed them, but just have to hope it doesn't come back as fierce as before. The results of the liver biopsy may play a big part in any future plans for the heart treatment.
Trying to just make the best of each day, and be stronger, braver and know when to push against it, and when to rest up and recuperate. Having spent time on Liver unit this week, there are a lot of brave people out their trying to find the best ways to live with all of this.
Hope you are well and that your appointment comes through this week. I hate waiting for appointments and test, (am waiting for Cardio appointment at the moment). I'm sure they will get you see by the right specialist and hope they can find some answers for you.
Have you got your Biopsy result yet? I'm not looking forward to that or the endoscope!
Ive now been referred to a Hepatologist, not a gastro man like was originally said. I'm on a waiting list for an appointment, hopefully they reckon about 7 or so weeks, until I see someone. They sound very busy.
Hows your AF? hope its still stable for you? Mine is ok at the moment so long as I take a high dose Betablocker and Flecainide.
Its a beautiful day down here in sunny Devon, just been out for a walk with my daughter and granddaughter. It is chilly tho. Whats it like up in Leeds?
Hi Lynda, got Biopsy results via phone call this morning from consultant. It's not Cirrhosis.. That's the good news. The rest of it is quite confusing. I have sever congestion and inflammation of the liver. He thinks due to my heart problems. The heart can't pump the blood correctly and that means it doesn't go through the liver correctly, causing swelling and inflammation. He said the repeated AFib would have affected the liver (something I didn't even know was possible.. There were no signs of amiodorone toxicity which is also good news, although I have no intention of taking it again.
I have some fibrosis and a negligible fatty liver (what he'd expect of anyone my age). They are still doing some more tests on the sample to see what information they can get to pass onto to Cardiology
I will wait for letter, I was taking notes as we were talking, but not convinced I've understood it all correctly. I did say to him, so this is good news? he said, yes, but not the best news. I think because of the heart, my liver is shot, but maybe if we can get the heart stable the liver problems won't get any worse. He spoke about the pulmonary vein in the liver and how that's affected by my heart issues.
I'm day 80 off Amiodorone and still no AFib, so long may that last. Seeing cardiologist on 18th December and see what he suggests. I'm not taking any rate or rhythm control drugs at the moment. Not even on anti coagulation although that is due to change soon. Only anti platelet after the stent procedure. Feel better being off all those drugs and not looking forward to going back on the heart meds again.
Sounds like Hepatology in Devon is very busy. Hopefully you'll get an appointment through soon. I think it's better it's with them than gastro. Cuts out the middle man kind of thing The endo will be fine. Trust me, I'm a wuss and I did mine without sedation. The worry and fear of it is worse than the procedure.
Glad you've had a sunny day in Devon, it's bit overcast in Leeds, getting colder now. I've been tucked up in the warm, on some antibiotics for a nasty kidney bug so staying in and behaving for a change.
Hope you get seen soon, and your AFib stays under control.
Hi Ange, wonderful news that you've not got cirrhosis! So pleased for you. Hopefully the congestion and inflammation will settle when they've sorted out the other side of your heart!? Sounds quite positive, obviously still a major worry for you, but hopefully it wont get any worse. The liver is a wonderful organ, hopefully will regenerate and recover, when your heart is fixed.
Its horrifying really how having AF and all its associated problems can affect other organs in the body. Was it an ablation procedure they did on your heart before? Ive heard good things about them.
Its good they're going to forward everything to Cardiology, ive heard bad things about the amiodorone drug on the af site, it shouldn't be prescribed with those horrendous side effects.
Day 80 that's great! Af is awful, do you shake when you go into it? My whole body shakes, its a horrible feeling. Hopefully they will get you back on the anticoagulants asap. Have you tried flecanide? seems to be ok so far, I hate taking all these drugs! I think I rattle some days. Ive got an Alivecor, have you got one? I can do my own ecg and forward it to my GP if necessary, its actually quite difficult to catch it on an ecg as you know, unless its a full blown episode lasting hours or days.
Hope your soon feeling lots better with your kidney infection, stay warm and plenty of fluids. Good Luck with your Cardiology appointment
Amiodarone is a notorius cardio drug with lots of side effects especially for liver.It does have its own side effects against the heart. So try another medicine instead. Thanks
Hi Lynda, my consultant is a great believer in blood tests, following a transfusion after a bleed they seem to be intent on getting the transfusion back 1cm3 at a time, so expect a lot of tests in your future, I suggest you ask about the tests from the testers rather than using Dr Google to second guess the answers.
Try to relax and trust the professionals, take the advice given and act on it. If it is a liver problem expect advice on drinking, basically don't. Salt can be replaced by low sodium. Lose weight. Get blood pressure down through exercise, diet and beta blockers.
Be positive, they are on the case and we have a brilliant NHS despite our current government's efforts.
Hi Tim, thanks for your reply, and very useful comments. As being newly diagnosed, well ct scan and us, I'm still reeling with shock! Its been very up and down still at the moment. Had some more bloods done yesterday, so hopefully my gp might get me an appointment with hep man sooner rather than later? At the moment ive been told its a 7-28 week wait for an initial app.
Have lost 2.5 stone already with a slimming group, more to go lol. Don't drink at all now, don't even miss it. Health is much more important and have cut salt down to minimal. Hopefully this will halt any damage, or slow it down?
I find it comforting to read the experiences of others on this great site, and it gives me hope.
Well done on the weight loss, that is my next target I just need to break my biscuit habit! well they are good for energy boosting. The salt reduction is good for your blood pressure, I was recommended to do this after a bleed. I found stopping drinking simple too. The other options at 52, husband and father of 2 sons were not realistic and let's face it we still have tea! Consider the delay for the appointment as indicating a lack of urgency.
You've certainly been through it recently, I had Hep C recently and it was 95% the virus that caused my cirrhosis ( my spellchecker said it's the right spelling so yours is aswell YAY ) so yours might not necessarily be the drink ,I drank quite a bit as well ; nothing at all now ;So you'll probably have many scans, ct's, cardiology tests, etc. I cannot remember how many but it was over about a year. after consulting Dr. Google I decided to go to the Gym which I believed helped immensely, the liver transplant happened quite quickly after being accepted onto the list and Ime' now 6 months post-transplant and recovering really well. So please don't worry about the tests you cant do anything about them apart from maybe improving your overall fitness if you can and if you think you need to. So my advice to you is whatever the consultant advises DO IT I'me positive you will not regret it!
Thanks for your kind words of encouragement, sounds like your've been through a lot. I'm really pleased that your've been given the gift of a new liver! Wonderful news, and your doing so well. I'm sure your going to the gym would of helped your overall fitness. I'm thinking of maybe swimming? that'd be a good start, and walking more.
I'm going to try not to stress over the tests, ive got an idea now what roughly will be done, so worrying won't alter anything. I'm still nervous but i will do whatever the Consultant or his team say. Thanks for replying, and all the best Lynda
Hi, Lynda ....just found out your quiet near to me ......at the beginning of November l was 999 into hospital with an abscess on my liver which burst clogging up my bile ducts , causing kidney failure and full blown septicaemia ...pain OMG l didn’t know what to do with myself , l was Delirious with a temperature of 42+ for three days until they found the right drugs to control it .Im back home now , had Christmas but managed to fall broke a toe, graze my tongue ( yes tongue) on the carpet 🤣🤣🤣and bruise other bits including head butting the bedroom door from a three foot distant !
Ive never drunk alcohol in my life or smoked but it’s just just *ods law l keep getting ill .
I had so many MRIs and scans in hospital , lm now waiting to see a liver consultant, a heart consultant ( l have many heart problems) my bowel consultant and anyone else who wants to prod , poke, eyeball and extract stuff from me ......🥺
Im nest to the coast ...where the grackles like to visit !
Thinking of you , sending my love , keep smiling ...think of me grazing my tongue and braking my toe 🤣🤣🤣🤣🤣🤣
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The endo will be fine. Trust me, I'm a wuss and I did mine without sedation. The worry and fear of it is worse than the procedure.
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