Sad unhappy 😭

[Morkmindy]

I have rang number blt so wait for ring back the more I read the more upset and hopeless I feel I didn't know anything was wrong till blood test for her flagged up liver now it seams it decompensated I feel like may aswell give up now no nice information or hope sorry for my misery but how I feel

[BritishLiverTrust1 Partner British Liver Trust]

Dear Morkmindy,

We know that living with liver disease can be hard and feel overwhelming at times. Other members will hopefully reply soon with some words to help.

Our helpline closed at 3pm and reopens tomorrow at 9am, when they will complete any callbacks from today. If you feel you need support before then, please consider contacting one of the organisations included on this page of our website:

britishlivertrust.org.uk/in...

Best wishes

British Liver Trust

[AyrshireK]

Hi Morkmindy, sorry you are feeling so low, your previous posts don't detail what liver symptoms you are experiencing and certainly without ascites and/or bleeding from varices or major derangement of liver bloods it is unlikely your liver is in a decompensated state.

There is always hope, my hubby was decompensated back in April 2012 when he nearly died from a massive variceal bleed. He was on the transplant list for 10 months between 2014 and 2015 but stabilized enough to actually end up too well for transplant and 7+ years later he's still here, ticking along, ok in the grand scheme of things and riding his bike a lot and living the best life he possibly can.

It took him a while (a good few years) to adjust to his suddenly being poorly, in his case it seemed like almost overnight and completely out of the blue that he was actually fighting for his life in HDU. Over the years we've come to realise that life with cirrhosis is like riding a roller coaster - there are ups and downs, good days and bad and you've just got to ride that roller coaster. Write off the bad days and make the absolute best of the good.

It's not quite clear from your posts where you are at health wise and that's what you need to clarify first with your doctors. Is it cirrhosis or is it not? Then what interventions are they going to put in place - there is no treatment for cirrhosis but you can get treatment for the various symptoms it throws off plus continued healthy living and abstinence if booze is the cause will all help stop or slow any deterioration and even possibly reverse some of the damage done.

A life with cirrhosis (if that's what you've got) needn't be all doom and gloom but it can take a while to get over that initial catastrophizing phase.

Best wishes,

Katie

[Morkmindy in reply to AyrshireK]

Thanks yes it's cirrosais but iv been out hospital over year no acites now not sure with bloods my doctor said last blood tests I was healthier then some walking around just if you read Google it puts you deaths door no hope and because I only get telephone appointment with docs at hospital bit unsure what to make of it all my letters sa y decompensated but until low pottasium didn't realise any damage was done but glad iv found this page as some hopeful comments that's only good thing

[AyrshireK in reply to Morkmindy]

Have you been having your 6 monthly scans? And other checks, phone appts. have sadly become too frequent and doctor can't properly assess you by phone.Really once you have a diagnosis it's all about keeping yourself as well as possible and dealing with symptoms as or when they arise.

It sounds like you are heading in the right direction with no current signs of decompensation and bloods which have stabilized.

My hubby has had a couple of spells of low potassium but a short course of prescribed potassium put that right plus he now has a banana daily to get some on his diet.

Hubbies consultant has frequently told us he has patients who have had a cirrhosis diagnosis for 20+ years who are nowhere near deaths door nor transplant needy.

Having stopped the cause of your cirrhosis and seeing improvements in bloods hopefully you'll soon feel better in yourself.

My hubby is back walking including climbing SW Scotlands highest peak (The Merrick) a year after coming off t/p list and frequently cycles almost 40 miles cross country mountain biking albeit on e-bike. We've just packed our bike gear to hopefully go a short ride on our manual bikes tomorrow. Life is for living.

A lot about living with this condition is positive mental attitude. Don't lie down to it, don't dwell on it daily, get off Dr Google 'cos it will just drag you down.

Make the most of the days when you feel more well. My hubby never feels 100% but boy he feels better a day out in the fresh air even if he pays for it later with fatigue.

[Charlie-legs in reply to Morkmindy]

I sympathise with you completely. I had the same diagnosis at the beginning of lockdown 2020. I had no idea what was going on but this site pulled me through the confusion. I think that the best advice I was given by many was DON'T GOOGLE!! I am 5 weeks post liver transplant today and the transplant team also say don't Google, you will scare yourself to death. Take note of how you feel, there are good days and bad ones that is very true but live, you are still here and that's to be cherished.

This place will support you.... you can be sure of that 🫂🙏🏼🐦

[Morkmindy]

You have made my day yes I get scans and last one gall bladder good no other signs apart from scarring that was there only problem I had was bit swelling but that's gone good appetite eat for fun now love food just try stay positive thankyou so much I feel much better after your comments I know no alcohol not saying I won't fall have odd shandy but I never really fancy it so that's good didn't think I was that heavy a drinker but lockdown didn't help and having own business I we as worried and drank I hadn't drank for while before that bit of stop and start girl BB it we are where we are so glad I found this place to go to and be around what feel like friends

[wurzle]

Hi mindy. I know exactly how you feel. When I left hospital over 2 years ago I was given hardly any information convinced I was on deaths door or in serious need of a transplant as that what they told me in hospital. I'm so glad I found this site as I now have a fuller understanding of my condition. Following the advice I've found on here I am now stable and well-compensated. I just wanted to say hang in there. It does get better x

[wurzle in reply to wurzle]

The symptoms that is x

[Morkmindy in reply to wurzle]

Thanks wurzle blt been on phone this morning said I was not getting support or information needed I live Newcastle and lots of specialist care in Newcastle but I'm not getting it hopefully I'll know what to do ask for now glad your ok and thanks your right don't Google