Told no treatment, no Liver transplant, blocked bile ducts not resolved after two ERCPs. Left Right intrahepatic ducts. Left to palliative care, no surgery or bypass offered does this sound right to anyone ? Does anyone know of an ERCP specialist?
Were South East England
Doesn't sound right. My hubby was unblocked several times and eventually transplanted years ago.Which hospital is this
Carole
The Royal Free Hospital, he's had 2.5 weeks in then one week they kept taking biopsies for charlangcarcinoma, but all scans and results say possible or no evidence they are all contradictory? It's scary we actually need an urgent ERCP which Dr is trying to get. The Professor rang the Dr to say palliative. They did two ERCPS first week said blockage put a plastic stent in then took it out a week later as it was blocked then just left him.It's actually heartbreaking the tests he has been put through plus 2 liver biopsies again with no Cirrhosis, what did you husband have?
And thank you for you reply ♥️
I think you should try and get to Kings College liver unit.My hubby has alpha 1. Liver got to its end .had liver transplant.only after removing it did they find it was full of cancer.did not show on any tests. Otherwise would have not got a TP. Now 13 years post and still doing ok.
Carole
Dear Dave46
We are sorry to read this, if you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
Best wishes
British Liver Trust
Thank you , when I request information formally talk about MRCP ERCP to drain make him more comfortable - Cancer diagnosis wooly, both ERCPs failed first one plastic stent second one taken out sent home palliative,?;everyone saying go to Kings College How? We have been to private healthcare and Royal Marsden who have both rejected were stuck he will die within a month. Royal Free can't take him for Liver Transplant because there is no trial for Charlangcarcinoma at the moment, Bilirubin currently 580.😞
Hello
We’re sorry to read of the challenges you feel you have faced. Here is the link to our Patient Charter which states clearly the rights you have, in terms of your care, as a patient with a liver condition.
britishlivertrust.org.uk/li...
Your local Patient Advice and Liaison Service (PALS) in England & Wales, Patient Advice and Support Service (PASS) in Scotland or Patient and Client Council (PCC) in Northern Ireland may be able to support you further and we have attached the links below.
nhs.uk/nhs-services/hospita...
careinfoscotland.scot/topic...
In Wales, contact the PALS department in your local health board area
Chronic liver disease is an unpredictable condition. However, there are some symptoms that indicate the liver has become so badly damaged it can no longer work properly – this is known as ‘decompensated cirrhosis’. It’s important for patients with decompensated cirrhosis to have the opportunity to talk about the impact of their condition, and to think about their wishes for the future.
This information will help you talk to your hepatology team, GP, relatives and carers about how you would like your future care to progress, and encourage you to start those conversations early, so you can make your preferred care options clear.
Although these conversations can be difficult, patients and their families or carers often find that planning ahead brings them peace of mind. Your healthcare team and loved ones need to understand your wishes and be aware of your thoughts and preferences.
For more detailed information you can download our Thinking ahead booklet, which also covers end of life care in a separate section that can be looked at when you feel ready.
britishlivertrust.org.uk/in...
Best wishes
British Liver Trust
Bile ducts?
Bilirubin again!
High Bilirubin
High Bilirubin 1.9 and 0.5
Deranged Liver Enzymes
