Some more advice please?

[taar]

Hi all, seeking some guidance from the very helpful and kind souls here...

I am a 61+y old female, and I have cirrhosis from NASH. I had bleeding varices 3m ago (over the New Year) and spent 4 days in hospital. When they did an endoscopy, they couldn't tell which of the 3 varices had been bleeding, so they didn't band any of them. The specialist said then I have a 65-80% likelihood of surviving the next 5yrs.

I am lucky because generally I feel pretty much okay. I think my ankles, lower legs are more swollen more than they used to be, and I do get itchy skin from time to time.

So? What happens next?

As far as I can tell the next thing I might have to deal with is ascites-- is that right? How will I know it is ascites and be able to tell it is different to being overweight?

The other thing I also worry about is HE...will I know if that develops? People say it is like being in a fog, is there anything else I will be able to recognize it or tell my husband what to look out for. HE is really a frightening prospect for me.

Any and all contributions welcome.

Taar

[AyrshireK]

Hi taar, have you had a read at the British Liver Trust page on cirrhosis, it tells you about the different symptoms and what to watch out for. britishlivertrust.org.uk/li...

Not everyone gets all the serious symptoms, you can go on for years in a compensated state, however, you must keep on top of things. If you or your hubby notice any changes make sure your consultant is made aware as it might be a sign you are beginning to deteriorate.

Eat well, make sure you reduce your salt intake, exercise when you can and generally try and keep on living.

Hopefully you are seeing a consultant and are being monitored at least 6 monthly - ultrasound scan and bloods including AFP (Alpha fetoprotein).

As regards Hepatic Encephalopathy it can be in a mild form or like some folks on here have experienced very severe. Again the BLT has a page on HE. britishlivertrust.org.uk/li...

Are you taking lactulose just now? Going to the loo 3-4 times daily can help prevent the toxin build up which causes HE symptoms. If you start to experience any memory, concentration issues you might also want to see about Rifaximin which is a treatment for HE too.

Are you being seen at one of the main transplant centres? Has transplant ever been discussed. If you start to see an increasing number of symptoms then push for referral to a T/P centre. Even if they don't think you are in need just now, transplant centres do prefer to see you too early rather than too late. At 61 you've got years ahead of you but some T/P centres do see advanced age (65-70+) as a slight contraindication to transplant.

It's good that you are feeling generally ok, hopefully you stay that way for years. My hubbies consultant has got patients on his book who have had a diagnosis of cirrhosis for 20+ years and are no where near needing transplant so as long as you stay well then its a positive. My hubby is coming up 7 years diagnosed at the end of this month and is generally doing ok.

Any feeling of swelling in the tummy or legs that is unusual, get it checked at your GP - simple physical examination should tell whether it's fluid or not plus your 6 monthly ultrasound will check it too.

All the best,

Katie

[taar in reply to AyrshireK]

Hi Katie

I read all your posts, they always seem to give me the answers I need, so I do appreciate the time you take to help others.

So far, I feel I am being well taken care of by the medical team. When I had my issues over the New Year, the specialist said they would give me a couple of months to recover, and then do another endoscopy, and I am due to have another ultrasound sooner rather than later also.

At that time, they put me on Carvedilol, and Omeprazole, and Pioglitazone, as I have type 2 diabetes as well. I am not on Lactulose or anything like that, but I don't seem to have problems with going to the loo, but I will bear that in mind for the future.

When they first discovered my liver issues due to abnormal blood tests back in 2012, they told me then that I probably had a liver transplant in my future (I told my GP this, and she said-- I thought you would die of a heart attack!--{I get on with her well!})

I haven't seen a transplant centre yet, I think QE 2 Birmingham is our local one- (I live in South Wales) About 6m ago, before the NY issues, I organised to take semi retirement, working 50%, and that kicked in as of this week, so I should be able to rest more, but still be active and keep my brain engaged too.

Any way, thanks again Katie, and everyone on the site. You are all very kind and helpful.

T

[Smyally]

Hi taar. Sorry to hear about the bleeding you had over New Year. It can be quite frightening can’t it. I’m glad you feel ok most the time. As for what happens next well everyone’s situation is different. It’s important to remember that not everybody suffers every symptom. I’ve had cirrhosis since 2015 and I’ve had the hepatic encephalopathy and bleeding varicies but I’ve never had Ascites. There is a lot of information on the British Liver Trust website about these conditions. From what I can gather Ascites feels more like your body swelling with fluid and fluid retention that can be drained off in hospital if it gets bad, but somebody else who’s been through it first hand maybe able to answer more accurately.

For HE there are different stages. So onset may be gradual or sudden. Look out for changes in personality or mood swings. Your doctors can monitor this for you as well by checking your ammonia levels in your blood by taking blood tests. I hope this is helpful to you and if I can think of anything else I will get back to you. Try not to worry as some people with cirrhosis can live a fairly normal life with minimal symptoms. Take care x

[taar in reply to Smyally]

Thank you Smyally...trying to understand what might happen next, and how to recognize it for what it is seems important for me, so thank you for taking the time to respond....keep calm and carry on, and enjoy the good days while we can. All the best to you and yours.

T

[Ansil]

Hi hope you’re ok.last year in may had my third Oesophageal bleed and had banding myself the consultant then referred me to Birmingham liver hospital.after going to my first appointment and being assessed had another bleed in the November just six months on.my problem was a hepatic thrombosis causing the hypertension and cirrosis of my liver.from my bleed in may I started to suffer with memory loss through encolopathy although slight at first,like forgetting what I was saying midway through sentences also my belly button started pushing out resulting in a umbilical hernia.thats when the asities kicked in.thats when I was put on diuretics which helped at first but by the time of being assessed I’d had two drains.i wasn’t yellow but did develop swollen legs after my second bleed at the time of being accepted for a liver .in which I received just four weeks ago after waiting three months.and now apart from the obvious wound pain I’m cirrosis symptom free.but you have to remain positive! It’s so important.even as terrifying as the situation is.if you need any advice I’ll do my best.and wish you both all the best.stay strong for each other.x

[taar in reply to Ansil]

Ansil, thank you for your reply.

Congratulations on the liver transplant-- you are sounding very good for 4 weeks in! When were you first diagnosed, and how long did you have to wait for a liver--if it isn't rude to ask? That would seem to be an immensely stressful time, I am guessing.

It helps me to have some understanding of how individual people perceive their symptoms/issues, it seems so different for each and every one of us, so I really appreciate your sharing. Stay strong, and stay well.

All the best, T.

[mncold]

Hi taar,

You have gotten some excellent answers here from those better able to answer some of your questions.

My 2 cents is more from the side of the loved one, since it is my husband who has cirrhosis, diagnosed in Nov 2015 with liver and kidney failure and sees his liver doctor every 6 months. His liver doctor says hubby can look forward to a normal life span - as long as he stays off the booze, which he is. Hubby has not had bleeds and so we don't have to deal with that aspect at this time.

As to HE - smyally just posted a chart re: HE that might be helpful to you and your husband. The one thing I notice about my husband is he occasionally is not sure about a direction when driving, I notice this because he is sooo much better at that then I am LOL. On the other hand we both just entered our 70's, although his 94 year old mother is still living on her own, driving and playing gold. I am thinking that your husband would notice any of the more obvious signs of HE - confusion, trembling of the hands, not knowing things that you would normally know and you both could have some procedures in place if he noticed the big things.

Wishing you all the best,

Mary