Hi, my hubby is newly diagnosed with decompensated cirrhosis, he had ascites in legs and abdomen a few weeks ago which has now gone. He had an endoscopy today which showed no sign of cancer or varices. However may I ask a few questions.
His tummy still seems a little bloated from the endoscopy, how do I know if this is the cause or wether it’s the start of ascites in the abdomen?
Does ascites develop quickly ?
Is he likely to get varices in the future?
Will his pale complexion ever return to normal
Will he be able to gain weight and muscle( this dropped so much in such a short time )
Will he be able to return to work as he feels it’s the dizziness that is stopping him from doing so
He wasn’t a heavy drinker but stopped completely around 8 weeks ago. He manages to potter around and do household jobs on a daily basis and has improved to how he was when first started with problems . We see a liver specialist soon who I know that I can ask the above questions but prefer to ask you guys beforehand. Is there anything else we should be asking the specialist. So sorry for all the questions . Thanks all take care x
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Moux1
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Hi Moux, i'll go through your questions and see if I can help.
His tummy still seems a little bloated from the endoscopy, how do I know if this is the cause or wether it’s the start of ascites in the abdomen? How long ago did he have the endoscopy? They do fill the patient with air during the procedure and in coming hours it normally releases - lots of wind from both ends is normal. However, there can be situations where this doesn't happen and if it hasn't then you really need to contact the endoscopy unit that did the procedure. If he was very windy post op then it is unlikely to be due to the procedure and could indeed be a relapse of his ascites which would need checking out. Is he on diuretics and following a low salt diet to prevent fluid accumulation.
Does ascites develop quickly? It can certainly refill in under a week if not controlled by diuretics.
Is he likely to get varices in the future?
Possibly - varices are due to portal hypertension which is a result of the damaged liver. Blood can not flow through the scarred liver tissue as it should and therefore starts to try to find alternative routes - often in smaller blood vessels which can't cope with the increased volume and pressure and start to bulge. Often patients are prescribe a targetted beta blocker such as carvedilol or propanolol. It's good that he doesn't have any just now but they will keep checking with repeat endoscopies. My hubby has had 42 varices banded since 2012 - since 2014 he's had annual endoscopies (before that it was every 5-8 weeks) and this year is the first he'll miss as he's been clear of varices for so long. He had a massive bleed which was the start of his liver diagnosis journey. He has never had ascites though - everyone is different in how their liver disease presents.
Will his pale complexion ever return to normal? By pale do you mean that sallow type complexion that goes along with jaundice? - if his liver stabilizes and his bilirubin level gets back to normal then the yellowy look may dissipate. Some people just go pale because obviously they are poorly, circulation impacted with liver disease and maybe not as much blood comes to the surface.
Will he be able to gain weight and muscle( this dropped so much in such a short time ?
At the clinic appointment PUSH for him to be referred to a liver specialist dietician, they will assess him and provide personalized dietary advice because eating the right things for his stage of disease is important to try to maintain his fuelling and his muscle mass. They may also prescribe protein supplement drinks to help boost him. Following liver dietician advice my hubby went from 8 1/2 stone (skeletal and labelled malnourished) to 11 stone and regained muscle mass. He now cycles regularly and has actually dropped a stone which his consultant wants him to put back on. I'll ping you a bit of information we received which may help in the interim.
Will he be able to return to work as he feels it’s the dizziness that is stopping him from doing so? It will depend on the type of work he does and what kind of recovery he makes, if his job entails driving and he has any suggestion of Hepatic Encephalopathy then he'll not be able to drive.
My hubby was a welder in heavy engineering - lots of bending, hauling stuff about, heavy work, concentration, health and safety considerations etc. etc. There is no way he could return to this now as he just isn't well enough despite being stable for the last few years. He isn't able to drive, concentrate, stay on task and sadly due to cognitive difficulties isn't really able to take in new things so couldn't retrain into another position. I know of many folks who do continue to work despite cirrhosis but it depends on how well they are. It sounds like early days for your hubby yet and he needs to have chance to get over the decompensated stage and hopefully go some way to stable liver disease.
No question is a silly one and someone will always try and provide an answer based on their own personal circumstances and experiences. We were all newbies once.
The BLT page on cirrhosis is quite useful britishlivertrust.org.uk/in... and I have certainly find it reallly useful to learn as much as I could about the condition so that when we do go to appointments we make the most of the time allotted. Get a notebook purely for hubbies condition - before the consultation jot down all the meds and doses he is on (as doctor will often record these), note down any symptoms or areas of concern you have and a list of all the questions you want to ask - take a pen to record the answers and that way you won't go all blank and can work down your answers. Hopefully you can be a TEAM in this, you are his carer so should be able to go to appointments with him - we are just back from Edinburgh where although letter said come alone it also said UNLESS you need support - which your hubby does. Two pairs of ears are better than one and it helps you to navigate all the med speak etc.
Thank you so much , the endoscopy was early yesterday morning , I know I’m over anxious re new things and want to be aware. The liver nurse did advise him to eat lots of things including cake, cream and high calorie foodstuff along with fortisip. He has no appetite loss or feeling nauseous thank goodness. His complexion can go from pale to sallow . I was concerned as his GP stopped the water meds which has made me anxious so that’s something I need to ask the specialist about . Thank you so much for replying and inboxing , it is very much appreciated
Hello Moux1, you always get a bloated tummy after an endoscopy. I've had a few myself for the exact same reason as your hubby. Also the same result no varices and no sign of cancer (never got any throughout decompensated cirrhosis) but I was suffering badly with ascites and had to be drained every 2 to 3 weeks. I could look 9 months pregnant in 2 weeks, so your answer is yes it does build up quickly depending on how far the disease has developed.He really needs to seek advice from a good dietitian. My advice was to eat a very low salt diet (2g of salt per day) but eat plenty of protein (usually with every meal) and rich foods like full fat creams, biscuits, ice-cream, custard, scones with clotted cream, teacakes with lots of unsalted butter, supplement drinks (dietitian will prescribe) and anything along those lines between meals. This keeps the muscle mass from being eaten by the liver when it requires protein to be able to work and brake toxins down.
Try to stay as active as possible and keep a bag of sweets in on you if the dizziness starts. I wasn't able to work just with the inconvenience of being full of ascites fluid let alone all the other ailments.
However, I have had a transplant now because I was at end of life liver disease stage of decompensated cirrhosis. 3 months post transplant and my colour came back about 5 days after the operation. Your husband's cirrhosis to me sounds stage 2/3 decompensated and is reversible to compensated but you need a full diagnosis to determine what treatment is necessary and diet which suits the stage of scarring.
I'm waffling away and the consultant specialist will give you all the answers. Please be completely honest with your doctor and take every bit of advice given and you definitely will see a difference.
Thank you Danny , he does eat a lot but maybe should eat a larger supper, he has definitely improved to what he was a few month ago with really bad cellulitis and low calcium and protein and was admitted. He then developed ascites and had a drip up, I’m hoping he continues to improve but I actually thought decompensated couldn’t be reversed. Thanks for your reply
My specialist is always so busy I find it’s helpful to be really focused with him on what I want to know. So go armed with your questions. Mine always chuckles at the end of one of my appointments and says ‘do you want any more of the contents of my brain?’ I also found this forum very helpful as well as the BLT website to get information. I had decompensated cirrhosis diagnosed last March (2021), I was admitted as an emergency with a very deep rooted infection which threw my liver into rapid decline. I was very sick. I lost a lot of muscle mass and with that weight, had an endoscopy which showed two small grade 1 varices and was malnourished. To condense a long story...with no alcohol, a good diet, right meds and exercise I returned by about August to compensated. Normal bloods and gaining muscle mass. Now, a year on, I’m having to watch my weight, my muscles are all back, all my bloods are normal and my diet has shifted a bit. At the start it was high calorie, high protein diet. So as much in as possible. Now, I’m putting on weight if I eat like that so it’s high protein and slightly elevated calories. Make sure your husband gets referred to a dietician so that he gets the right dietary support. I live a normal life. I work. I travel. I do all the things I used to do- except I don’t drink alcohol and watch my diet. So it’s quite possible with the right support to life a full life.
That’s so good to hear , I’m really pleased for you, hopefully we can head in the same direction, it’s given me a lift after many sleepless nights and anxiety through the roof , to know there is hope, take care
Well put Aotea, yes you are one of the lucky ones who didn't have to go under the knife. Hard work though isn't it, not to be able to eat everything that you like. I wierdly (if that is a word) found my diet good while decompensated, I can't wait to go on holiday and just eat about anything for a few days. Then back to normal porridge and salad's, teehee!
Yes I never thought I had such a bad diet until I had to work with a dietician! There’s salt in everything! It’s a cheap way of making ready prepared food tasty. Until the sugar tax came in, sugar used to be the same. I can eat anything, but have to watch sugar, salt and fat. So it narrows it down a bit! I’ve become interested in nutrition and love to cook, so I’ve played around with stuff and found something that works for me. I’ve also found that I can have treats without it being a disaster. I used to be very strict but with the support of my dietician have become quite confident. Not overly so, cos my liver can remind me it’s there if I overdo it!
Here, here Aotea. Sorry to ambush your post Moux1 it's just I haven't posted for a while and don't get to speak with Aotea that much. Yeah my cousin has been ordering a lot of food from just eat and keeps on buying these deserts that get delivered. Wow, i had a couple of bites and they were fantastic but too much for me so soon after the transplant. I do remember my dietician saying "Dan you are overdoing your diet, eat a little more salt and protein and a desert wont kill you every now and then*. Getting told off by a dietician saying to eat a little more unhealthy.... hahahaha 😂.
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