Diagnosed with ARLD cirrhosis decompensated July 2022. Any helpful tips or advice would be greatly appreciated

[Chick_atee]

I presented to GP with ascities, jaundice and pain in around abdomen. Sent me straight to hospital. Had not been feeling well for a year or so and was putting it down to perhaps the start of menopause or heamacromatosis which is in my family. I had also relapsed after many years of recovery but had to deal with some traumatic events and got complacent.

Hospitalised twice for 6 days

ultra sound, endoscopy, sigmoidoscopy completed.

Abstinent from alcohol for well over 6 months.

put on dueretics which helped with ascities initially but seems to be building again. Adjustments have been made a number of time with dueretics. Lactalose which I find very hard to stomach.

Advised to obviously remain abstinent and low sodium diet.

There have been no talks of fibroscan, meld or child Pugh. Transplant has not been brought up by consultant. They have tested my blood at clinic appointments and say they are going in the right direction.

I am feeling very alone and in a state of limbo with this disease. Consultant does not give me any information unless I ask and even then I feel they just can’t seem to give me satisfactory information. I feel I have to follow up a lot and I have a fear I may be sidelined due to the stigma around ARLD.

Symptoms include extreme fatigue. Sleep problems, uncomfortable ascities, severe hemaroids bleeding. Bleeding gums and nose. Bowel movement problems. Vomiting but now just occasionally nausea. Muscle wastage, low weight. Went from not being able to keep food down to now keeping it down. Gurgling and bubbling from organs during the night. Can only seem to lie flat rather than side sleeping. Back pain has started behind liver. Sides of abdomen feel tight and stiff. Pain in abdomen comes and goes.

What’s next if anyone has experienced similar to me. Do things get better or worse?

I have a child with medical needs and while I have help from my family I want to be able to fully function again.

I wonder where does all this leave me?

Thanks in advance for anyone who may have more information?

[AyrshireK]

Hi Chick_atee, welcome to our merry band. You'll certainly get lots of support here and hopefully we can help you with things going forward.

Good to hear you are maintaining your abstinence as this is essential and the only way your liver will get the break it needs to try and re-compensate.

You don't need a fibroscan - it will offer absolutely nothing to your diagnosis and would only confirm what you and your doctors know in that you have cirrhosis.

As for the MELD, UKELD or Child Pugh calculations these are done by your doctors based on your blood work and they would reveal whether you were at a stage where you might need to be considered for transplant. In 10 (almost 11 years) of my hubby have a cirrhosis diagnosis we have never been told any of his scores - sometimes people get bogged down by all these scores when it is more important to concentrate on symptoms and generally getting yourself well.

They won't consider transplant if you are improving, they will give it time. Transplant is a life saving operation only so if your body is getting a bit better on it's own they arn't going to put you on the operating table if they can avoid it. Obviously if after a period of time and if there is no improvement then transplant becomes a consideration as the next/only available line of treatment.

Key thing is to keep yourself well, low salt diet, plenty carbs and plenty protein. Ideally you want to see a liver specialist dietician for a personal assessment of your dietary needs - you do not want to be losing muscle mass (i'll ping you a bit of information via the chat function).

You need to avoid infection where possible, eat well, exercise and make sure your doctor knows if you do have a recurrence of ascites as your diuretics may need tweaking or you may require a drain. Don't ignore ascites as the fluid can potentially become infected and lead to severe problems.

The BLT has a good page on cirrhosis which may help, we keep a notebook for appointments where we jot down all the questions we want to ask, we also jot down symptoms and current meds. The more you learn about the condition yourself the more pertinent your questions can be. A priority for you just now is some dietary advice and make sure you have your 6 monthly scans and bloods & if you have ascites contact your doctor a.s.a.p.

britishlivertrust.org.uk/in...

[My hubby has had a cirrhosis diagnosis since April 2012 when he presented dreadfully poorly with a massive variceal bleed and it was determined he had cirrhosis due to auto immune liver disease, he had 42 varices banded over the next two years and was assessed for transplant in 2014. During the assessment they found that his portal hypertension had caused aneurysms in his splenic artery and he had to have an embolization operation which in effect killed off his spleen. The spleen death ended up improving his liver numbers, reversed his portal hypertension and so much so he got such good liver numbers that he no longer met the criteria for t/p so was delisted in 2015. For the past 7 years now he's remained pretty stable, getting his scans every 6 months, regular bloods and an annual endoscopy. He has fatigue issues and symptoms of minor HE but other than that I guess he's doing well in the grand scheme of things. He took up cycling late in 2021 and really enjoys that on both a manual bike and now an e-mountain bike. Life with cirrhosis isn't all doom and gloom and provided you do get stable then your liver is an amazing organ. We were told hubby may need a transplant in the future but until then we make the most of every good day.]

If you have any further questions which members can help with then just fire away. Always someone around.

Katie

[AyrshireK]

The Irish National Liver Tranplant Programme is based at St. Vincent's Hospital in Dublin, the guidance for transplant listing over there may be different from the NHS in the UK but if you don't see significant improvement in your health you should probably ask your current doctor if you could be seen at St. Vincent's for an opinion. I am sorry I totally don't know how the Irish health service works as regards financing though liver transplant is government funded (I believe).

Katie

[Chick_atee in reply to AyrshireK]

Thanks again Katie. Yes, I think it is government funded. I heard something about St. Vincent’s in Dublin so thanks for confirming.

They have only just set up a website for the Irish Liver Foundation. I have to say it needs more work and certainly is not up to BLTF standards yet but at least it’s started. When I found out Ireland had no support system for liver patients and their families I was really surprised. Onwards and upwards hopefully. Wishing you and your husband all the very best.

[redpoint72]

Hello there. Well done with the abstaining from the alcohol

I now all to well,not easy!!.

Things can and do improve.

Its a long slow road, I won't lie,.

What I've found is that you really need to push for as much information you want from your consultant,,its your body,you are entitled to know what is fully going on with yourself. I'm on good terms with my gastro consultant's secretary.

I did ask for my child's pugh score and ukeld score....I'm certainly not obsessed with by it any means!!!! I wished to know it simple as.

I had /have all the symptoms you mention....it all takes time .

I understand your way of thinking,regarding the stigma side of arld.

Ive had a few comments before,but the worst was a sonographer doing my ultrasound, extremely rude....anyway I reported her. It wasn't justified,or fare. Upsetting.

Just wondered if you have been prescribed any protein shakes at all,to help with muscle loss?.

Best to discuss with your medical team.

My best.Chris

[Chick_atee in reply to redpoint72]

Thanks Chris. Appreciate your reply. I will look into protein shakes for shur.

Sorry to hear you had that experience with sonographer and good on you for reporting it.

I wish you the very best on your journey and thank you again. It’s unfortunate but good to know I’m not the only one having all of these symptoms. I could never have imagined how complicated this disease is!

Ann.

[redpoint72 in reply to Chick_atee]

Your welcome ann.Your certainly not alone love.

Yes ,so many symptoms.....its an amazing organ really ,the liver.....it can take an awful lot of punishment, but only so much!!!.

It certainly made me realise how fragile life is.

You will get all sorts of helpful information on this blt forum,from all different perspectives . Generally the nhs staff ive dealt with have been amazing....really have. Just a very odd one who has something g to say!!!. .

I wish you well love.

My best. Chris

[Chick_atee in reply to redpoint72]

Thank you Chris. Wishing you the best on your journey.

Ann.

[Alibaba80]

Hi Chick

Just wondered how long you have had all

these symptoms?

I also have many of your symptoms...the bowel issues and wind are awful and I always have lots of bubbling and gurgling in my abdomen most days and back pain from liver.

Do you have any heart symptoms also?

I don't have cirrhosis but another liver disease called NRH.

What are the next steps from your consultants? Are they just monitoring you now?

Also have you lost much weight ( I have) .

Alex

[Chick_atee in reply to Alibaba80]

Hi Alex, yes, there are just monitoring now.

Weight loss has been an issue with muscle loss but I am trying to eat small nutritious meals every 2 to 3 hours leaving the largest until before bedtime as advised.

Ascities is up and down with dueretics being adjusted now and again.

Wishing you the very best.

Ann.

[Alibaba80 in reply to Chick_atee]

Hi Chick. Do you manage to eat the food OK? I feel extremely uncomfortable after eating and bowels are awful😔

[Chick_atee in reply to Alibaba80]

It’s got a little better in that I’m not vomiting anymore. Yes, bowls are all over the place but I believe that’s all part of it.

[Alibaba80 in reply to Chick_atee]

Mine too yes. Do they give you anything then or just monitoring for now?

[Chick_atee in reply to Alibaba80]

No. I’m just on dueretics, lactalose as required and a multivitamin.

[Chick_atee in reply to Alibaba80]

forgot to say I don’t have heart problems. I have had these symptoms for a year or more.

[AyrshireK]

Going wholly plant based is a matter of choice and not an absolute necessity in improving liver health.

If it works for you then fine but we should not advise it for all and individuals should ideally get their own individualized dietary advice - preferably from a liver specialist dietician.

Whilst I know well you you can get a lot of the food groups in a plant based diet - it is unfortunately true that a lot of off the shelf vegan products are very highly processed. People with advanced cirrhosis require good sources of protein which is found in dairy, eggs, fish and meat. People with cirrhosis also often lack various vitamins and minerals which a good balanced diet can help provide. I have vegan criends who end up popping supplements to substitute for those they can't get eating wholly plant based.

As I say if it works for you then ok but it goes against the dietary advice provided by liver specialist dieticians working in liver transplant unit.

Katie

[Chick_atee in reply to AyrshireK]

Thanks Katie, yes I agree that it could work well. Depends very much on the particular way cirrhosis is affecting the body in each individual I guess.

On off the shelf meals and products I find it extremely difficult to get something low in sodium & that is not processed.

I like to cook but unfortunately haven’t got the energy at the moment apart from the basics.

Wishing you the very best. Ann.

[reggie3131 in reply to AyrshireK]

how can you be "whole plant based" if you eat vegan stuff off the shelf. you obviously dont understand what whole plant based means. It means you need to eat stuff naturally grown from the earth....not from shelves at the supermarket.

[Chick_atee]

Thank you for all that information. I will check it all out. I’m vegetarian so meat isn’t a problem and neither is alcohol since my diagnosis however when I achieve the ability to go out into the community again then I will be safe guarding my recovery by returning to support groups again. Complacency is not an option.

After being in recovery for a number of years it can be easy to think you’ve got it covered. Unfortunately relapse happened when times got tough. Addiction is always waiting unfortunately.

On plant based eating. I have heard that but I’m struggling to see at the moment how I can pack in the calories to stop weight loss and muscle wastage continuing without out having the fats from dairy too. I must do more research.

Thank you, wishing you the best.

[Chick_atee]

I found What the Health very interesting. I watch it a few months ago and I think forks over knives will be a good help when I can cook properly again!