Decompensated Liver Disease - Recent Diagnosis

[PRU2024]

Thank you to everyone who was contributed valuable insights.

I was diagnosed with DLD after being admitted to hospital is ascites last summer. Prior to that 8 years of PTSD had led me to needing anti-depressants in the form of deloxotine and ever increasing self medication with alcohol, a very harmful and potent combination, especially the alcohol.

Just over a year ago I collapsed and lost consciousness, a pattern that was to continue and worsen over the months ahead prior to hospital. I was told this was due to an issue with my vagus nerve and I was also suffering from silent reflux.

I cut back on alcohol, although it was still way in excess of a healthy amount, and was warned of the dangers of stopping altogether too quickly. But I was at an impasse, still drinking and on my duloxotine and too scared to stop completely following many trips to A&E and my GP.

Eventually a particularly bad fall down a staircase and the quick action taken by my GP took me back to hospital where jaundice and ascites was discovered. I was taken off my anti-depressants immediately and had two drains and many other procedures. I lost 17kg in 3 weeks and the DLD diagnosis was confirmed.

The plus side is without the fall I would have probably carried on stuck in the same behaviour, I had long stopped drinking for any sense of joy or craving, it was part of my daily medicine (poison). At least now I had caught the disease earlier than otherwise and was also finally able to safely stop drinking altogether.

Blood tests and other procedures are and will always be a part of my life going forward, I want to everything in my power to be as healthy as possible and never want my family and friends to have to worry about me in the way they had to last year.

Blood tests have shown improvements, particularly compared to where I was when admitted to hospital but I am still out of range in some areas, particularly Gamma GT. Platelet counts are abnormal and clotting is getting worse, I now suffer nose bleeds and small cuts take longer to scab over.

I am on restricted fluid intake (1500ml per day), no/low salt, limited processed food and obviously no alcohol. I take diuretics, lactulose and omezrapole daily and keep a close eye on my weight remaining stable.

I cook from scratch most days to try to ensure high protein content, calcium and other vitamins and nourishment designed to help avoid muscle wasting, keep bone density and keep my liver as heathy as possible as well as anything that aids my ability to sleep.

Sleep is awful. Initially I was woken by the meds and then struggled to get back to sleep due to peripheral neurotherapy making my feet and lower part of my body very hot and itchy at night.

I am not able to work yet so when the night comes around and I lie awake or wake up after just a short while I no longer fight it as, for the time being, know I may have the opportunity to sleep the following day, often at a random time when my body declares it now needs to sleep! However I do worry longer term about returning to work and what may or may not be feasible as I need the money, need the purpose but will not be able to hold down a senior and stressful executive position as I had done in the past prior to this.

Like many others, the need for nutrition and hunger pangs mean food before bed plus snacks for when I wake during the night.

The other concerning side effect I have had is what I call 'glitching' - my eyesight feels like I am at a strobe lit disco and things I have been looking at start to merge into other images when I turn my gaze in disorientation. I have also lost control of my hand movements on some occasions, or instance whilst trying to eat soup sending the spoon flying across the room and when writing Christmas cards two of them ended up being involuntary screwed up on the floor mid sentence.

I have not yet had the chance to discuss this most recent development with my doctor but after some research I think it may be a form of H.E. especially as I reduced my lactulose unaware that it was also reducing toxins in my brain as well as just keeping me regular. I hope if I go back to daily dosage, however unpleasant the usual side effects, it will keep at bay the far more scary episodes of glitching/H.E.

I am still awaiting a fibroscan so I can get a read on the extent of the cirrhosis and how much I have been able to do to repair my liver. What is done is done but I would like to know how much to read into my future test results.

I will keep on doing all that I can to stay as healthy as possible no matter what. I hope to get the go ahead to return to the gym in some capacity for the obvious benefits of some aerobic activity which may also help with sleep and prevent muscle wastage.

I am still awaiting to see my overall hospital consultant, even though this was meant to have taken place within 6 weeks of my discharge, and hopefully I will get a gym referral then and ask any other questions, although my GP has been excellent in answering my questions and helping me to manage and understand my condition, as well as giving me all important encouragement to carry on as I have been doing.

Thank you for taking the time to read my story and my thoughts and best wishes go out to everyone who is suffering rom this condition, to those caring for them and to all who lover and worry about both the patient and the carers.

[QuietButBold]

I found your story to be an inspirational one - so thank you ever so much for sharing it with us all.

It is also really great to hear you have experienced such good support from your GP (so many GP Practices are currently heavily over-subscribed that, best will in the World, they struggle to achieve likewise).

Here is to hoping it will not be too much longer before you get to have your Fibroscan, see your Hospital Consultant and ask your questions.

It has been a long, tough, road of learning and discovery for you to this stage, all credit to you for your continued endeavours in leveraging those opportunities as have presented themselves to date.

My best wishes, before too long, that your Consultant / Team might be able to confirm your having gained some wins lately.

[PRU2024 in reply to QuietButBold]

Thank you for the kind wishes. Fingers crossed things move in the right direction and if anything of note crops up in the meantime I will be sure to share here.

[lonmallin50]

Well done for stopping the drink your doing everything right now the liver will now be repairing itself now all it takes is a bit of time your on the right track, good luck Lon

[Ewife]

Hello! Just wanted to take a moment to congratulate you. Your attitude is a fantastic mix of realism and positivity and should inspire people. I wish you all the best going forward......keep fighting!Ewife

[Oldbits]

Wow, well done. It takes a lot of strength to change your life. Hubbie battled with alcohol along with other problems. It took a long time for things to change for the better for him after he stopped, trying his patience and mine. You're giving yourself a fighting chance and that's fantastic and it sounds as if youre doing all the right things. His GGT is the only one out of range now and was told that's ok with cirrhosis as all his other LFTs are in range. He had a stressful job in the city but changed to a local office and reduced his hours. Now taken early retirement because he was lucky enough to do so. He has filled his life with a myriad of other things and living to the full and determined, like you, to never go back down that rabbit hole. Take care and good luck.