Hi my husband was diagnosed with decompensated liver in October 22, he's abstained from alcohol, has lost 3 stone,and looks and feels well!Past few days he's noticed his feet swelling again, it's hard to put his shoes on!
He's on spironolactone 100mg everyday with 20mg furosemide in morning and 40mg furosemide in the evening!
He's waiting for a fibroscan!
Should I be concerned about the swelling?
He hasn't got anyone who he can contact as yet, only his GP, which he will ring tmw!
Thankyou
Tulip
Has your husband been referred to a hospital consultant? Either gastroenterologist or better still hepatologist. He really needs to be under their care considering he has a history of decompensated cirrhosis.
Definitely contact his GP as this could be oedema (fluid build up). Is he following a low salt diet and eating plenty protein and if he's on his feet a lot he needs to get those feet elevated above his heart level when resting.
Push for that hospital referral as he should be under proper care for his liver needs.
Katie
Hi KateThanks for your reply!
He was admitted to hospital with odema, confusion, sepsis in October, he is under a liver specialist but only by telephone!
He had a telephone consultation in December, she was pleased with his abstinence and weight loss!
He his awaiting a fibroscan and blood tests, he's had a endoscopy which showed small varices no bleeding!
His next phone consultation with the liver specialist is in March!
Tulip
He's on warfarin, bisopran, furosemide and spironolactone, plus lactulose which he won't take for fear of going toilet
He needs to be seen by liver specialist, if you have sectetaries details I would be contacting them to try and expedite that next appiuntment and get a face to dace one. GP should be able to help you push for it.
As regards lactulose, he needs to take that precisely because it makes you go to loo. Having had a previous bout of confusion (potential hepatic encephalopathy) he needs to move his bowels 3-4 times daily to rid his body of toxins. HE is brain damage due to toxin build up. If he's going too much then lactulose dosage can be amended but it's dangerous to not take it. I understand the 'urgency' and even incontinence issues it can cause - my hubby been on it 10 years now for HE along with Rifaximin too.
Push for a more urgent face to face appointment.
Katie
May I ask has your Husband had or been on the transplant list ? I thought HE was in late stages of illness and hoped it went after transplant ? My Husband is on those meds and we are awaiting a call for his second transplant
thanks
My hubby was assessed and listed for transplant in 2014 but delisted after 10 months because his liver health stabilized. He has mild HE - never hospitalized with it. HE can actually occur at all stages of cirrhosis.His liver is currently well compensated and he doesn't meet the criteria for t/p. Risk outweighs potential benefits.
Katie
Thankyou!I will see if the liver specialist has a contact no
Hello.
I would phone the main hospital switchboard and ask to speak to the consultant’s secretary.
About 3 months after my cirrhosis diagnosis, I felt that my medication might need to be changed (reduced in my case though). I spoke to his secretary, explained the situation and I had a phone call back from my consultant the next morning. New dosage was agreed and we had a very brief chat about my progress. It’s definitely worth doing!
Also, I find it useful to phone my consultant’s secretary a few weeks before I am due for my next 6 monthly bloods/scan. It’s more peace of mind for me really as I’m not always convinced that I would be getting appointments if I didn’t give them a little push!! It works well. They normally send me a form/sample bag for bloods and then I make an appt with the phlebotomy dept at the hospital.
These issues really do need to be discussed l, so I would say make that call as soon as you can!! 😊
Thankyou! I will do that today!
Dear Tulip1973
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 9am to 3pm on 0800 652 7330 (excluding bank holidays)
Best wishes
British Liver Trust
Hi, after my diagnosis (cirrhosis with ascites & oedema) 2 years ago, my regime was similar to that which you describe. As I don't generally have a problem with movements, my lactulose was decreased and eventually stopped. I had loads of side effects from spirolactolone, so my dose was eventually dropped to 50mg once a day, but I still had/have mild oedema so recently had 20mg furosemide daily added to my scrip. My GP wants bloods to check kidney function, as furosemide is known to be quite aggressive on kidneys but I haven't had those yet. My feet are still swollen enough to need 2 shoe sizes up on normal, and sometimes my lower legs feel swollen although they don't look especially puffy. I adapted to a low-salt, high protein diet early, and this hasn't proved to be a problem apart from I put too much weight back on. Sitting and standing are bad, light walking or legs up are good.
As everyone else has said, if in doubt speak to your specialist. They'd rather spend 5 mins getting you straight now than a costly episode later
Good luck
Thankyou for your reply, he phoned GP today; his furosemide has been increased by 20mg, so now 40mg in morning and 40mg in evening, he's got appointment with GP next Friday, she's gona follow up the fibroscan and bloods with the specialist!
Decompensated liver
Decompensated liver disease
Decompensated Cirrhosis
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Work and decompensated liver
