Hi,
When originally diagnosed with cirrhosis I was told I would require bi-annual check-ups.
It’s been 11 months since my last and despite chasing on several occasions, I’m just advised I’m on a waiting list.
I understand the NHS is under immense pressure and I’m fairly lucky that my condition is moderate so far although I do suffer with some symptoms.
My question to the forum. Is this a typical scenario that people experience once diagnosed?
Thanks
No it’s not. I have regular check ups every six months…they are sometimes a month or so out, but I’m always seen (or have a telephone call) twice a year. The important thing is to get your bloods done and to have an ultrasound scan. I personally would go to your GP and explain what is happening. They can order the bloods and can chivvy along your consultant.
Thanks Aotea2012. I’ll see if I can get my GP to chase up.
Hi Aotea can confirm you should be tested every six months which happens with me.The Hepatologist gives me the test forms for the next tests at the end of every appt.with him then I book them with the people who do them.
I always have yearly US scans and yearly AFP blood test and telephone consultation
I was diagnosed in August 2019 with cirrhosis of the liver caused by excess alcohol
Stopped drinking straight away 5 years now
When reading posts and see that everyone is half yearly I just can’t believe it
I am just grateful I am under surveillance I have never ask why but I will in December when I speak to consultant
My husband's have always been annually 5 minutes on the phone since his cirrhosis diagnosis 4 years ago until he developed Peritonitis last year. Now his bloods are monthly and he has drains so is monitored better. My cousin's husband was always 6 monthly for 15 years. I hope you get sorted.
For me yes, released from hospital with no advice about diet or what medication I can and can't take such as painkillers, have had one brief meeting with a registrar who said possible cirrhosis on the report mild ascites, again no advice about what was wrong with me and what to do or expect, was asked if I had any questions, but as for me newly diagnosed, everything was still in a spin and I had no idea what I needed to know.
GP are no help, they do not read any reports sent to them with directions for care, rang for an appointment, basically told a couple of days later by text to bugger off, you are under the care of the clinic and to contact them. First and only appointment, told I would be seen every 3 months, this was over 6 months ago, by chance I found a number to ring, who then gave me another number to contact the nurse.
Nurse was great, having bloods this week and they booked me in for an appointment in a couple of weeks, after scan and bloods. First scan after hospital release (was a couple of days ago), never met such a crack pot, can't say what husband said, started talking about a fatty liver and that as a diabetic I can't eat XYZ, (I am not diabetic) and then about how they were going to have a big G&T when they get home, then laughed a lot and said "I shouldn't be saying that to you"!
I really think care is the post code lottery and if I hadn't found a number for the nurse I would still be waiting. It does make me think I'm not as bad as I thought or unless I start drinking again and put myself in hospital I may as well not bother.
Try to find a number for the ward and ask for the nurse, or the nurse's number, it's the only help I've had.
Wishing you well.
Thanks to everyone for your replies!
Dear Funkhauser
Here are the link to information about cirrhosis on our website, which you may find useful
britishlivertrust.org.uk/in... (including a suite of publications towards the bottom that are downloadable or can be posted)
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
