hi, I was diagnosed with alcoholic cirrhosis 3 years ago in 2015, I had been ill with chest infection, which turned into pneumonia,and then found out I had glandular fever as well. My liver count was 435, and was referred to preston gastroenterology, I saw a doctor Nixon who said I had cirrhosis, and the best thing to do was to eat as much as possible, to keep my weight up, but no meds offered. In 2016 I noticed my stomach was swelling up, I saw my own gp who said I was just putting a bit of weight on,and gave me a diet sheet. Four days later I got an appointment because I was concerned something was wrong, the doc said I had fluid in my tummy, and was sent to ae at chorley and I was kept in to have a drain. They drained 14 ltrs out of me, and sent home the day after. since then I have 2 more drains, and been in with encephalopathy four times. my problem is I am exhausted all the time, I have told my cons, but he didn't have an answer. Does anyone have any ideas what I do about this, as living like this is not an option.
always tired: hi, I was diagnosed with... - British Liver Trust
always tired
Good morning,
Really sorry you are going through such a bad time.
I certainly understand where you are coming from having had encephalopathy, exhaustion but thankfully fairly mild ascites. I had a transplant in 2016 (alcohol related liver disease)
From everything you say it would seem that you should really be seeing a specialist in liver disease (hepatologist)
They would be able to ensure that you are properly managing your condition and getting the best available treatment.
The National Institute for Health and Excellence (NICE) guidelines say that anyone with a diagnosis of cirrhosis should be seen by a specialist in hepatology.
Maybe your consultant is a hepatologist working within the gastro-intestinal department of your local hospital. His or her qualifications might be on any letters from your clinic appointments.
Whether or not your consultant is a hepatologist, get an appointment with your GP and explain exactly how you feel and ask for a referral to either a specialist liver consultant or back to your consultant. Take with you somebody you trust who will be able to give you moral support and ensure you say the right things and remember what was said.
One last thing, in the forum we tend not to name our doctors or mention blood results as the British Liver Trust forum guidelines specifically says posts shouldn’t contain such information.
Take care and let us know how you get on.
Jim
thanks jim, I have learned more from your reply than anything from my consultant in three years. I am seeing my gp tomorrow, and will tell him I want to see an hepatologist, and I will check on my consultants credentials. thank you so much steve
hi jim, I have decided enough is enough, my daughter is a practice manager at the docs near where she lives and she said it could be to late if I wait for my consultant to refer me for a transplant, so I am going to email him and say I want referring. May I ask you who decided you were ready to be referred, I did ask my consultant a while ago for referral but he said I wasn't that ill, and my lft and bloods were a bit off but ok, so I wouldn't be accepted. That was about 10 months ago, and he still says I am quite stable? I have no energy at all, feel like crap, and have no interest in doing anything. steve
Good morning Steve,
I had multiple admissions to a local hospital in London and it became clear that there was no prospect of a recovery without a transplant.
I remember my consultant telling me this and I thought I misheard because I thought I would eventually get better and transplants are only for 'very sick people'.
I got my partner to come in to check that I had heard correctly. He sat us both down an was truthful about how sick I was and a transplant was now the only treatment available.
I was referred that day and had an appointment at a transplant centre within a few weeks.
If you have been diagnosed with cirrhosis, my understanding is that you should have your Model for End stage Liver Disease (MELD) score re-assessed every six months. (NICE guidelines NG50) So ten months seems quite long to be waiting for a re-assessment.
This score plus other factors, will determine if it would be appropriate for a referral to a transplant centre.
Approach your GP or look at your most recent letter from the consultant and contact their medical secretary whose contact details should be on the letter. Say you are aware of the six months in the guidelines and politely request an appointment.
Take care and let us know how it goes.
Jim
nice.org.uk/guidance/ng50/c...
britishlivertrust.org.uk/li...
thanks jim, you are my go to guy for information, and good advice. I have done it, I emailed his secretary and am waiting for a reply.
Unfortunately chronic exhaustion and often sleep deprivation are common in cirrhosis it's partly to do with your liver struggling to do all it's many jobs and releasing energy from foods is one of them. It's been my hubbies major symptom from day one and there isn't a great deal that can be done about it. You can try and fuel - eating little and often - and listen to your body when it needs a rest although even when my hubby naps during the day the sleep is totally non-refreshing and he often wakes worse than before the nap.
We were given dietary advice about fueling which read -
"When your liver is not working well or when you have liver disease, your body needs extra energy (calories) and protein. This is because sometimes your body cannot digest and absorb its food properly and therefore is unable to store and use energy."
"When you eat starchy carbohydrate it is broken down into sugar (glucose). This is your body’s main energy source. Some of this energy is stored in your muscles and liver as a starch called glycogen. This is a back-up energy store to be used later when it is needed, between meals, if you have missed a meal or during a long fast such as overnight.
The liver co-ordinates the release of this energy until you next have something to eat; these energy stores are then replaced at your next meal. If the liver is not working properly and you develop liver disease symptoms, the liver cannot replace this store.
The energy from the food you eat only lasts for 2 hours. If you have liver disease and have no energy stores, your body must find an alternative source of energy after this time. Fat tissue is hard to break down quickly, so instead your body will break down its own muscles for energy. If this continues, your muscles will get weaker and waste away.
It is important that you try and eat regular meals and snacks containing carbohydrate every 2-3 hours.
To prevent muscle being used for energy and to keep you strong, it is important to ‘re-fuel’ your body regularly. Eating meals and snacks containing starchy carbohydrate every 2-3 hours provides enough energy to stop your body breaking down its own muscles."
"You will need a large bedtime snack containing carbohydrate for your body to use overnight as it is a long time until breakfast!"
Has any discussion been had about sending you to a liver transplant unit? You've had a decompensated liver with the ascites and HE symptoms and repeated hospitalisations. Maybe it's time for you to touch base with either St. James's, Leeds or QE Birmingham. I take it you are no longer drinking? If you are coming on 3 years sober you should be eligible for consideration for transplant assessment. I would certainly be asking for a referral.
All the best to you.
Katie
p.s. My hubby was listed for 10 months but delisted as he doesn't have the ascites and only minor HE. They won't do a transplant purely on the basis of constant fatigue and exhaustion because sadly they can't guarantee that a transplant will cure that as the med regime can cause it too.
Hubby is on Rifaximin and Lactulose to deal with HE and medicine due to his previous varices, portal hypertensive gastropathy, splenic infarction and other bits an pieces. His cirrhosis is not alcohol related but auto-immune.
hi, thanks for reply about food etc, I will try what you said and see if I improve. p.s. I was put on lactulose, but lactulose griped me, and gave me wind of biblical proportians, so I refused to take it, I take senokot max and never miss a day with my poo. steve
Good morning Steve,
Lactulose works on two levels. Its does what you expect - keep your bowels moving. Thats prevents overproduction of the bacteria which metabolise food and as a by product place ammonia in the blood stream. Secondly it does something that others anti constipation meds don't. It alters the ph of the bowel. This further discourages the bacterial growth.
For this reason it might be worth trying it again along with over the counter meds for wind and follow it with a nice yoghurt or flavoured drink to get rid of the taste.
Hope you have a good day.
Jim
Rifaxomin helped me too. I found lactulose difficult too, living life sitting on the toilet was not much fun. mixture of biblical proportions of wind AND runny bowels not a good mix!
Hi thank you so much for this information.
Did you give up drinking alcohol when you were diagnosed in 2015?
yes I did, I didn't find it hard, now I love non alchol becks lager, straight from the fridge. I know some people have problems with stopping drinking, I say when they put alcohol and liver in the same sentence, pack up. oh I did drink a lot, that means a bottle of vodka a night. take care laura
Well done for that. Hope you find the medical answers you need and good luck for a speedy recovery
Hi Steve, just to follow on from the great advice given above, I cannot emphasise enough that you need to see a hepatologist. As for HE, I too have been diagnosed and am on Rifaxamin. This is an expensive anti-biotic and I cannot access it through my GP. It is hospital issue only, and I get it from my hepatologist in 6 monthly batches. It works well for me but really messes up my sleep patterns, but that is an easy price to pay for the ability to concentrate for longer and all the other benefits.
Oh I get mine on repeat from my gp, i get 500mg twice a day,I also get 2 water tablets
take care.
Hi,
I am also on rifaxamin and lactose. It controls my HE quite well so far......
Don’t take too much lactose. My liver doc says to take a big sip of it. Just enough to have about 3 normal bowel movements a day. That should help clear the ammonia build up. Take too much and you will get the runs. Take too little and the ammonia won’t clear. The cirrhosis tablets make you constipated also. Just find out what your good dose should be. Other laxatives won’t get rid of the ammonia build up.
Hope this helps,
Brett
Good morning,
Being prescribed Rifaxamine and lactulose took me from repeated admissions with encephalopathy to none at all.
After getting permission from the local NHS Clinical Commissioning Group, my GP took over prescribing the Rifaxamine. For three months supply it was around £1500, so it seriously damaged their pharmacy spending.
This was responsible for me getting well enough to be listed for a transplant.
Well worth putting up with the discomfort that came with the medication.
As for the taste - sickly sweet - I took the lactulose and immediately followed it with the prescribed Ensure supplement. ( preferred strawberry)
Jim
Hi,
Could you please explain a bit of your story in terms of timeline. How long did you wait for the transplant ? How do you feel today ?
Thanks Jo
I was diagnosed in November 2014.
2015 - 2016 spent a total of 80 days hospitalised with, encephalopathy, spontaneous bacterial peritonitis ( with sepsis) and systemic thrush.
Listed February 2016 - after being listed for two weeks received a donated liver (March 2016)
From diagnosis to transplant - fourteen months.
Nine weeks post transplant went on a 5k sponsored walk for the ward. Sixteen months post transplant won a medal at the British Transplant Games in Scotland. Currently in training for the 2018 games in Birmingham.
Hope that answers your question.
Jim
Woaw ! impressive. It gives a hope. Thanks
Rifaxamine is very expensive here in Australia also.
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