Hello, my name is Alec.
I've been diagnosed with end stage cirrhosis and need a liver transplant. I'm struggling to sleep. I'm really restless and itch like mad. It's horrible and lack of sleep is making me ill. Awake for hours then suddenly hit with fatigue. My sleep pattern is all over place. I was wondering if anyone else is suffering with this, my consultant is a bit vague about it and says there's nothing they can do about it. Any advice would be much appreciated.
Thank you
Hi and welcome to the forum. When you say you need a transplant, have you been assessed and currently on the transplant list? Are you under the care of one of the transplant centres and a hepatologist as I am surprised that your consultant is vague about symptoms of disrupted sleep pattern and itching if they are a hepatologist?
Sleep disruption and change in sleeping pattern is common in end stage cirrhosis - often it is tied in with issues relating to toxin build up and Hepatic Encephalopathy. Are you currently on treatment to help with symptoms of HE? - usually this would be Lactulose and Rifaximin. My hubby (with cirrhosis) has a dreadful sleep pattern and it was one of the symptoms which got him referred to transplant unit.
As regards itching, in end stage liver disease this is usually due to a build up of bile salts or bilirubin and is maddening - they call it pruritis and although little will take it away 100% there are medications that can be prescribed to help ease it. There is a danger that by scratching away at yourself you introduce infections into your skin so they need to try and calm the itch for you. Some doctors will prescribe antihistimine type medications to ease it - Fexofenadine gets mentioned on here a lot or there is a medication that those with Primary Biliary Cholangitis take called Ursodeoxycholic acid to reduce bilirubin build up. Your doctor should know some remedies to help with this itch. If you do a search of BLT forum for liver itch you'll see how others try to ease their symptoms.
Katie
Hello Katie and thank you for replying.
I had tests done at The Royal Free Hospital last july for liver transplant, which was scary to find out so much that i never knew. I didn't have endoscopy test done as it was going to be done at my local hospital. then we went into lockdown and no thats nearly over, hospitals are full and have huge back log with out patients waiting treatment. I asked my consultant if they could do it under anaesthetic because when they tried to do it under sedation before i couldn't do it as i suffer with claustrophobia and have a bad gag reflex. They said no try it under sedation again, which im not putting myself through that again. so it was left at that and next consultation isn't till oct this year now. I've tried antihistamines but not those 1s, so ile be asking about those that your on about. think they might be a bit more conciderate seeing as they killed half my liver with a blood clot from hartsman reversal operation in 2017 after having ivticulitus. since then my liver has gone through the stages. told last year i have life exspectancy of 2-5 years without transplant.
I was taking spirolactone water diuretics but caused bad cramp striping salt from my body. stopped taking them and cramp stopped. only take them if i start swelling up.
consultant tells me no salt then i see dietitian at Royal Free and told im aloud a little amount each day. total confusion!
Alec.
So, you arn't currently listed for t/p then, just still going through assessment process. Royal Free should definitely be able to advise on itching and HE meds.
My hubby has had 30 odd endoscopies now & 42 varices banded, he has a really, really severe gag reflex and we requested an anaesthetic but were told it was a no because it would require an operating theatre, anaesthetist and it made the process really difficult because you need to be both intubated (breathing tube down) then camera/scope down the oesphagus.
Hubby has found that if he holds his breath during the application of throat spray then just tries to go to sleep when they put bite block in and sedation takes effect then he gets on much better. Often sedation knocks you out if you are calm to start off with, sadly if you are anxious and fighting it the sedation doesn't take as good an effect.
Hubby gets his endoscopies done in Edinburgh as the transplant team doctors are better than local. Hubby has had a cirrhosis diagnosis since April 2012 - due to Autoimmune Hepatitis. He was listed for transplant in 2014 but delisted after 10 months because he improved somewhat. Sadly currently awaiting an ERCP because a recent scan has revealed gallstones lodged in his bile duct. He's not looking forward to a potential hour long endoscopy which will also only be done under sedation.
Best wishes going forward.
Katie
This may sound rather trivial but I can sympathise with your itching (I have cirrhosis) and tried changing my washing liquid from bio to non-bio Fairy. The itching has reduced considerably.
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