I’m not sure where to start. So my hubby was diagnosed with non alcoholic liver cirrhosis and spent 3 weeks in hospital. Half on ICU where I work and then half on the liver ward. Despite being on diagnosed 4 weeks ago he is quite far down the line of the condition. Jaundice ascities sepsis and MOF.
We got him home for a week only to be re-admitted to ICU again this Wednesday just gone. This time the ascities impaired his breathing and he was ventilated.
I’m a mess understandably so is he. The hardest part is there is no cause that they can find that started all this off.
Has anyone else found this. I’m just so confused as are the docs.
It’s hard as a nurse knowing some bits but also not knowing enough 😥
Any info help or being pointed in directions would be appreciated. I have so many questions daft ones but apart from the docs who don’t say a lot. I also want to be treated as though I know nothing as my head is mush.
Thank you for reading and I wish you all the best at whatever stage you are.
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Snips71
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Prayers for you &.your hubby! I've been living with Cirrhosis for some time! Until recently never had any systems, now if I eat bad I feel pain on side that last for some time. It can come & go! I like to think being in USA I have good doctors but sometimes they just don't seem to care it's just a.job were all numbers! What I'm learning is our lifestyle has everything to do with our long our body had handle or hang in here! Nurse your.hubby to health, I haven't drank a drop in 15 yrs, cured of hep c from blood transfusion. Thought I might be an exception but covid might have an impact on all our organs so many are now having issues with their organs due to covid! I read hear many having heart, lung issues fir sure now ready this appears liver! I pray for all us the world needs smarter doctors, betters drugs besides transplant to help us all! Love & show love ❤️ to your hubby I didn't acatch y'alls age, but clean eating & exercise is key I fail at both often! I diet get in this site often reading your story touched me hopefully UK has more answers for yall!
Hi there thank I you for replying. My hubby is 68 I am 52 but he’s a young 68. No issues before it just happened. Well it was probably brewing but there was t any signs or symptoms to indicate that anything was going on
Re eating he’s finding it hard as he’s not hungry but was trying to have something before this second admission now he’s being fed by an ng tube
Firstly please know you are not alone, and, any questions or queries you may have, do not feel frightened to reach out and ask, this group is so kind, helpful, understanding and “get it” from both patient and carer perspective, were all here for support❤️
Also, reach out to British Liver Trust, they are wonderful with guidance and help and their phone lines are manned by Liver Nurses (Monday-Friday 9am-3pm)
Our back story is my hubby has decompensated Cirrhosis and Hepatopulmonary Syndrome requiring Oxygen supplementation, unfortunately, hes been totally let down by the hospital (we were told last Aug, ‘unhappy liver and may need couple of drains’😡) meanwhile he lost so much muscle mass as a junior Dr told him, No salt diet, cant go out for meals, dont eat anything with any salt) he restricted his diet so bad, we had no nutritionist input, he had lost so much weight and muscle mass! The Gastro consultant took that long to be seen for 1st follow up appointment (end of last year) weve been playing catch up ever since!
Hubby hit rock bottom and he was so depressed, it was like watching his mind, body and soul just being eaten away!
Thanks to AyrshireK (a member on this forum) I was given advice from a nutritionist leaflet Liver Disease, High Protein, High Energy and thanks to the Nurses at British Liver Trust Ive since reached out to the Dietitians and also the consultant to prescribe Rifaximin & Lactulose. My hubby is now taking 3 Renopro Shots (20g protein/60ml bottle) & 2 Fortisip Compact Protein (18g protein/125ml bottle) and gently increasing his food intake, some days now reaching 2,100 calories roughly per day including supplements. He has to eat something every couple of hours as he cannot stomach big meals (stomach shrunk) Its taken months to get this far but I wont give up and I wont give in. We still have battles with food, mood & anxiety, just have to keep chipping away.
Im petrified of what our future holds, the only way to cure his liver disease and Hepatopulmonary syndrome is Transplant. At one point this year I was told to prepare for the worst, could be couple of days, could be couple of weeks, I was heartbroken 💔, Ive cared and nursed my hubby since and he is still here with me and still battling this damn awful disease. Underneath all this he wants to ask for assessment and he keeps trying to improve his health to get stronger, whilst he keeps fighting, so do I ❤️
You must remember to take time out for yourself too, trust me, I know how difficult that can be, but, to even get 10 minutes here and there to drink a hot drink sitting quietly keeps you going.
Keep strong, take care of you and your partner, remember where theres life theres hope and youre fighting the fight by your partners side. Sending you hugs ❤️
Hi K. Thank you so much for your reply it as lot. I am scared to death. His first admission on the 6th July he was in multi organ failure. Liver, he’s at and kidneys due to the infection. Jaundice, ascities etc. Ecoli, bacterial infection but no source. With me working on icu I knew what MOF could mean. But he got through it with 13.5 litres being drained off.
This time the ascities was impairing the breathing so I knew he would need to be vented. 6.5 litres this time.
I think I know too much but equally not enough. I keep thinking all the problems that could occur rather than concentrating on the positives it’s so hard as you know.
Hubby is now worrying asking if he is going to die. I said that they wouldn’t have admitted him to icu if they didn’t think they could get him through this stage. They wouldn’t admit him just because I work here.
I feel so lost and so out of sync.
I will take your advice and thank you from the bottom of my heart for helping x
From one scared partner to another, hang on in there, take each day as it comes, take deep breaths, its baby steps all the way, every tiny improvement is a win, this is how I cope each day.
Take care and sending hugs your way, dont forget were all here for each other
Hello love.Well any questions you have ask away....always some support here, some more medical minded,some more emotional support....
But I was the same as your husband over 4 years ago....jaundice,ascites, I was the same terrible trouble breathing, until I had 1 of several paracentesis done.
So cirrhosis diagnosis....
My own doing unfortunately.
Ive certainly learnt the hard way!!!!!.
So no cause has been found yet!?? That must be the difficult part?
Menatbyonsaybhe had 13.5 litres drained last time which didn’t really cause him major issues whereas this time with his breathing they drained 6.5 litre.
Right suz,I've had very similar amounts drained.....its not a pleasant process...although the relief was tremendous!!But essential in the end,it took some time for diuretics to start working,but there doing there job,spironolactone and furosemide...I'm sure your familiar with those.....🙂.
My gastro consultant at the time didn't expect me to improve as well as I have done.....so your husband may improve dramatically 🤞
I'd be lying if I said I hadn't asked myself the same question your husband asked you..............
And to this day I still get slightly upset when thinking back 4 years.
But we have to remain up beat.....that can help alot.
Yes you can phone the blt nurses, and chat away,concerns etc.
Not sure if he has lost weight at all ?i had big time,I was given ensure plus protein shakes....although you will know them as well i expect.....sorry,keep forgetting your a nurse🙂
Positive thoughts love. I fully understand its not easy.
Hi Chris. I am so sorry I thought that I had replied.
He was readmitted again 4 weeks ago on to ICU this time he was ventilated due to him struggling to breathe. This time he’s been drained 4 times. The diuretics are working on his legs so hopefully the rest will slow down.
Do the diuretics just slow the ascities or stop it.
He hadn’t lost weight but he has now as he doesn’t feel like eating. It improves after draining.
I am so pleased that you are feeling better. Do you still have any issues now.
I wish you all the best and thank you again.
Best wishes
Suzie
Ps my brain is mush at the mo so logic etc is fair away at the mo🤣
Morning suzie, Don't mither yourself about replying, alot on your plate.
Well after having several drains, the diuretics did start to make some difference, so I'm not bothered by ascites to much,its my legs ive been having trouble with regarding fluid....I still walk several miles a day,but its quite an effort with the fluid.
Spoke with my liver nurse last week,she mentioned about tight bandage wraps to help to bring the fluid further up my body,as will make it easier to get rid of..
Ive struggled with appetite since cirrhosis diagnosis, but mine also improved after the drains,there was room for food again!!!!!.
Is your husband home again?.
Its the lack of energy that I've never got used to.
I hope your coping ok love..I also wish your husband well.
Hi Snips, I’m sorry to hear that your husband is so poorly. Have they considered genetic and autoimmune causes. It seems to be quite common to diagnose NAFLD before they know what is actually causing the problem. I have Primary Billiary Cholangitis (PBC), Autoimmune Hepatitis (AIH) and Alpha 1 Antitrypsin Deficiency. It might be worth checking that they have ruled those out, although I know there are other autoimmune and genetic conditions that can affect the liver. Good luck, hang in there and make sure they put in palliative care. It doesn’t mean they’ve given up, it can run alongside investigations and transplant pathways but it will give you both support and hopefully stop him being readmitted to hospital. Sometimes you have to ask about palliative care because doctors are so focussed on solving the problem and finding a cure, they don’t think about it. Big hug x
You’re welcome. Knowing enough to be scared, but not enough to know the cure is just horrible. Make sure you look after yourself while you’re looking after him x
You do. Looking after him will be tiring, physically and emotionally. If you are able to take a break while he’s looked after in hospital make the most of it. And if people offer to help take them up on it. Even if it’s just to visit your husband while you go out for a coffee with a friend
So sorry to hear about your hubby. My husband was fine and one day he just started bleeding due to varicis. He went to the hospital and they banded them and told him he had NASH/Cirrhosis. This came out of the blue especially because I had been diagnosed with the same condition 3 yrs prior after they took my gallbladder out. I have done well since 2007 but my husband didn’t fare as well and he passed away while on the transplant list. I have luckily lived with F4 cirrhosis without any symptoms since then. It is very confusing and I feel your pain
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