Since Diagnosed with NASH cirrhosis… just been left in pain for two months … please can someone take time to help and advise . Thank you

[Sharonmcfarlane]

Hi , I’m looking to see if you can please help my mum as she was recently diagnosed with NASH cirrhosis in October with portal hypertension with splenomegaly ,oesophageal varcies on OGD now on carevidol for primary prophylaxis , noromocytic anemia with elevated qFit ,aortic stenosis , sarcoidosis with hilar lymphadenopathy , colonic polyps , hyper cholesterol and has 3 large hernias to lower abdominal .BMI is 30 with moderate volume free fluid mostly in the hernial sac , making hernial symptoms worse. Now on Spironolactone. 100 mg daily , carevidol 6.25 mg twice daily ,frusemide 40 mg twice daily and laxido once a day … Dr also asking to check U and E,s also hepatoma surveillance, management of fluid overload and should Mums blood pressure and heart rate be monitored weekly ? Since my mum has been started on Spironolactone , carvedoil and laxido my mum has had terrible pains in her abdomen daily which is totally restricting her quality of life as she is in the house every day trying to cope with the pain and also being sick sometimes? Mum had an appointment back to see liver specialist in hospital after 8 weeks but that hasn’t happened as she is off sick now …. And drs in surgery just advise to wait till next year to see liver specialist …. Does anyone know how they can help my mum , advise or what should she be trying ? Or what scans or blood tests should she be having ??? So sad to see my mum this way as she has always been a strong independent woman and now the opposite in the last few months … thank you in advance 🙏🏻❤️

[BritishLiverTrust1 Partner British Liver Trust]

Dear Sharonmcfarlane,

Until other forum members have a chance to respond, you may find it useful to talk things over with one of our nurses. The helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Sharonmcfarlane in reply to BritishLiverTrust1]

thank you so much for this number , called and spoke to a lovely lady who was very supportive x

[Booster666]

I feel for you so much! My husband was diagnosed with cirrhosis at the start of September after an MRI scan but it was the liver specialist at Sheffield Northern General that told him. He has since had three endoscopies for the varices' in oesophagus and stomach which seem to have worsened his condition rather than help. He gave up alcohol immediately on diagnosis but he seems to be getting worse rather than better. He has the pains in his right side/back which we believe is due to the swollen stomach pressing on his liver.

After the last endoscopy his blood test showed adverse readings on his kidneys and high potassium levels. The following day we were advised to go to A&E same day emergency where they decided to take him in to monitor him, put him on a drip to rehydrate the kidneys and to drain his stomach (he had 6 litres of liquid removed). This made a big difference to his pain and after 5 nights they allowed him to come home. But his stomach is now swollen again and the pain has returned.

I know this is not of any help, but after hearing your problems with hospital appointment I now realise what a good service we are getting at NGH in Sheffield. Our GP is next to useless as it is impossible to get an appointment so I am pleased we have the alternative, and more specialised service with NHS.

He takes paracetamol to ease the pain and has found a hot water bottle on his stomach helps him too as he is permanently cold and exhausted. All I can suggest is that you keep pushing to get an appointment but it is a waiting game and I pray that your mum gets the attention she needs very soon.

[Sharonmcfarlane in reply to Booster666]

hi ,

Thank so so much for al your advice , I hope your husband is feeling better now and yes my mum is the same , tired , cold and takes paracetamol and hot water bottle … maybe i should say if they can check her stomach … how long was your husband out the hospital ? Thank you and wish u both well x

[oap74]

It’s tough when you get to our age the Nhs is a law to its self you get good and bad experiences, as I see it you have two choices either go private or go against your natural instincts and make a nuisance of yourself with the NHS. All the best and good luck.

[Sharonmcfarlane in reply to oap74]

thank you ..yeah so true x

[Readlots]

Hi Sharon. When your Mum’s original appointment letter came through, did it have a phone number or email address for the consultants secretary? If it did she could try contacting them and asking if she could have an earlier appointment with the consultant. Medical secretaries are fab and can be really helpful at unblocking the system for you.

Do get Mum to call the BLT helpline as the nurses there may be able to advise. If necessary she could go to A&E but that would be a last resort if the pain is unbearable.

I know it’s horrible to see your Mum going through this, you’re doing all the right things getting information and looking out for her.

[Sharonmcfarlane in reply to Readlots]

thank you for your time and support x