I got told in May that I would need a Liver Transplant in y2rs time after being hospitalised and nearly dying from a Gastrointestinal bleed. I am not a drinker and have had an unexplained liver condition for 35yrs.
However I had a Fibroscan and it came back normal.
Also my blood results are on the outer ranges of normal where they have for years.
I have had 4sessions of Endoscopic Argon Gas Ablation to fix my stomach with no further bleeds.
I'm seeing the Liver Consultant for the 3rd time today as an outpatient at the Heath in Cardiff.
Any tips on what I should ask? If Fibroscan says no Cirrhosis is it reliable? Can he stick to his diagnosis and ignore the results. I just don't know
Written by
Chrisjohnsy
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Well if you were told that you would need liver transplant I think it was based on some solid reasons, tests. It should be that way. Have you got biopsy? Was your fibroscan ordered by some hepatologist?
now need a biopsy.....no cirrhosis means no Transplant but cirrhosis means Transplant within 5 yrs....bear in mind Ive had a liver condition since I was 25 ( Im now 59 ) so it is an incredible organ
Not sure where you get the impression that having cirrhosis would require a transplant in 5 years. My husbands consultant has patients on his books who have had a cirrhosis diagnosis for 20+ years who are neither at deaths door nor transplant needy. A compensated cirrhotic liver can go on for years.
Indeed, my hubby waa diagnosed with auto immune cirrhosis in April 2012 after nearly dying of a massive variceal bleed. He was put on t/p list in 2014 but delisted because he'd improved and no longer met the criteria for t/p. All these years later on he remains stable and not in need of t/p.
Thanks Katie, Im just going on what the consultant said to me today. He is saying my albumin / bilirubin scores are declining slowly and cirrhosis will make it happen faster. The big change for me is the bleeding. I had a big bleed in my knee and then almost died from a huge stomach bleed. That has now been treated with Argon Gas Ablation and the bleeding has stopped so that's good news. My consultant told me in May Transplant in 2 yrs so he's already rowing back from that. To be honest I don't think he really knows how it will all play out.
I would seek a second opinion. Consultants don't usually give timescales that far in advance. Cirrhosis and the patient's underlying health and habits are too unpredictable. They can give probabilities when someone is at end stage, but not a time to transplant because there is no way to tell with any accuracy. I've only heard of them randomly throwing out numbers to shock a patient into looking after themselves (stuff like, 'you'll be dead in a year if you don't stop drinking').
I wouldn't have much faith in a doctor apparently pulling numbers out of his backside over something so serious. You haven't even had proper investigations done. The main thing is to find the cause of the damage so it can be stopped or slowed. You might have to push for the proper medical care you need.
I agree with you. Its a rare condition....nothing to do with alcohol or any abuse. The cause of it has never been established. It hasn't bothered me for 30yrs but the bleeding / clotting is new and has changed. I can't look past the biopsy and to be honest I don't really want to have that done as its all a bit barbaric
You need the biopsy, I would actually have though you'd have had one long before now to try to establish the cause of your issue.
Since Wales does not have a transplant unit i'd be tempted to push for a second opinion from one if the t/p teams. It doesn't sound like you've had the best care to date. Have you had any other scan - like ultrasound?
When hubby was hospitalized with his bleed we knew almost immediately it was cirrhosis as he had an ultrasound and later a biopsy - he is life long t-total with no risky lifestyle behaviours and his is auto immune.
Get the biopsy, it's far less dramatic than it sounds. You can't progress tour care till you know what you are dealing with.
Hey there, hepatologists can tell you how long they think you have before needing a transplant but I would take it with a grain of salt. Usually they won’t tell you that though. As Katie said plenty of people live with cirrhosis for a very long time. So they don’t know if or how long you have had cirrhosis? I can’t believe they are just getting around to doing a biopsy. I haven’t had one but others on here say it’s not as bad as one would think. Sending positive energy your way.
yes, I think the biopsy will reveal a lot more. I think the Consultant was a bit naughty saying 2 years and he's rowed back from that massively when I saw him this week.
If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 10am to 3pm on 0800 652 7330 (excluding bank holidays)
Gastrointestinal bleeding may be associated with portal hypertension if there is no other cause. However portal hypertension can also occur in the absence of cirrhosis. This condition may be interpreted as non-cirrhotic portal hypertension. The result of the fibroscan in this case will show the absence of cirrhosis.
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