My husband was recently admitted to hospital with decompensated liver, jaundice and ascites. The jaundice and ascites went in a couple of weeks. He followed doctors advice and seemed to pick up but then his progress seems to have levelled off.
Anyway, today he said he felt a bit odd and now his legs and feet are swollen. Is there anything we can do to alleviate this. He is not due back at GP until the 12th September although he has an MRI of his head next week and an endoscopy on 25th. Should I try to get an earlier GP appointment we are waiting on another gastro appointment but don’t expect that to be till end Oct beg Nov.
Thanks
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Bs1524
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I'm so sorry your husband isn't well. I'm sorry I don't know the answer but I'm sure someone will be along soon to help you. Could you phone his consultant's secretary on Monday to see if his appointment can be brought forward or ask your Dr to write to him. Love and hugs to you both Lynne xxxc
I know. I have Nash with fibrosis ( caused by meds from my Drs over the years) I get so much pain from it cos my liver is so enlarged it stretches the capsule around it which causes the pain. Please take care of yourself Lynne
If in doubt I would err on the side of caution tbh. The words “felt a bit odd” in addition to swelling returning in part, or at least in a different place, should warrant a call/visit to the doctors. Alternatively ring 111 or use NHS 111online. Maybe see if he can describe “felt a bit odd” in a different way: lightheaded, dizzy, nauseous, confused?
Call 111 today. It could be lymphedema which will require diuretics and possibly strapping. Keep his legs elevated on a footstool or even dining chair when sitting. Keep me posted.
He is on diuretics and he has been ok the swelling came on last night. He got up this morning but gone back to bed as he feel unwell and refused to let me do anything saying it may be alright in bit?!
Swelling is something all the time I was pre transplant was something the Consultant always checked for as a sign of what is happening.
I would call the consultants secretary, as some advice I have had from GP's is not specialist enough.
I am not a doctor, but I think its a symptom to check on
I am trying to get him to let me take him to the walk in centre at the hospital that he is under and he says he feels better just tired. He isn’t sleeping well. Short of picking him up I cannot force him and I am so worried for him.
He has taken to eating lots of sweets which he never did before apart from the obvious reasons for not eating lots of sweets would they be particularly harmful to his liver?
You can try and tell him from me, I was as bad , But now after transplant I realise when ill I did not realise the situation and as someone that's been there please go and get it checked, its never a waste of time!
As far a sweets go I am not sure if a problem all I can say I went through a few fads bananas, apples, tea, cake it seems a part of the illness.
All I can say is now post transplant do I realise how unhelpful I was to my wife!
Hi Pam, try not to worry too much about eating too many sweets. At the stage he seems to be at getting energy in from any source is a good thing. In the latter stages of liver disease the liver cannot process foods as well so it uses up it built up energy stores in the muscles to compensate. This results in muscle wastage we all experience in the later stages of disease. So getting quick release sugars in from any form of carbs is helpful to the body at that stage. If you get the opportunity, try and get an appointment with a dietician if you can. They will tell you what is sensible. In terms of his current symptom change it is worth getting it checked out by your GP sooner rather than waiting till the 12th. Any significant change in symptoms you probably always want to get checked out just to be on the safe side.
Thanks for your advice he has an appointment with the dietician on 1st October. I agree with all of you he really should get himself checked over but he brushes aside my concerns and I am not able to force him. I work full time so taking him today would be the best solution. I am taking him for his MRI scan on Tuesday (that is for his head) so not sure if I could get him to go to the walk in centre then.
A lot of the times monitoring of any liver disease can be reliant on changes in symptoms. The docs know that you will always have some symptoms but when they change, either becoming better or worse, or it's something that hasn't been experienced before, they tend to want to know about it. It may not change anything they are doing but in some cases it will. It will also help to pick up early some of the more worrying complications.
You may have to tell your husband that we as patients are an important part of our medical team. Our role in the process is to be aware of changes and let the docs know about them. At the decompensated stage, most changes have the potential to be significant. So always worth getting checked.
Sorry to say I find the dietician useless for me, I can easily look up what food I should be eating, what the ideal food is, but I find the dietician never discusses quantities, food preparation, cooking instructions or laying out a meal plan.
Over the years as I move around a lot, I get sent to different dieticians...Usually I get things like you should eat a lot of roughage, oats, flower, eggs, soya, milk etc.
and ended up in hospital discovering I cannot metabolise them and I am allergic to a lot of the "recommended" foods and alternatives.
Well the 3 things you will always be told about are Sleep, Diet and Exercise.
What immediately springs to mind with Exhaustion and fatigue, is problems with sleep, low glycogen storage and diabetes.
When the liver is damaged it stores less glycogen resulting in decreased energy, which leads to fatigue and exhaustion, this is one of my main problems. I am active about 2 hours per day, this used to be the window I used to do gym in, as gym/exercise seemed to increase enerrgy, despite making me exhausted, go figure.
Sweets can be a short term fix, but you need to watch out or they will become a long term fix and grow addictive, the important thing is to eat a balanced diet with a slow to medium release of energy (can't believe I said that, I sound like my consultant, in the perfect world, lol, ofc if you have problems with diet, this is not really the right answer), which I find harder than a typical diabetic, because my food doesn't metabolise properly.
The addition of exercise can help immeasurably as it helps your body secrete waste which I scrub with a green scourer to remove it off my skin (don't try that at home :P) and helps with toilet etc. Diet is important for me as my liver impacts my metabolism too, which impacts glycogen storage and increases the amount of energy I have available.
I used to do targeted gym of the areas that avoided my liver, so avoiding crunchies, rowing and some weights, while doing lateral weights and x/trainer, though I still have compensated liver cirrhosis, so I would check with your GP and consultant before considering that sort of exercise.
I find my consultant more knowledgable than my GP, though getting input from him is often like talking to a stone, or carrying out a monosyllabic conversation), not sure if you attend the liver clinic? personally I find it exhausting and hypocritical, so I no longer do, but am sure it is beneficial to some. My GP is an expert on diabetes, clueless on liver cirrhosis, so they just ignore my liver cirrhosis altogether.
That said, the GP is more approachable and the consultant does not feedback information, even when I ask for information.
High blood sugars can make you tired and can make you sleep, without any restorative benefit.
I regularly get swollen feet and legs, sometimes I am so itchy, I scrape the skin off and drain the liquid out, not recommended, I can't fit my shoes (even bought a bigger size) and I avoid wearing socks, when I was in hospital they recommended wearing stockings, again, it's something to discuss with your gp/consultant.
My GP has given me cream to reduce the itchiness. It does seem to help a lot.
It's important to watch the amount of salt you eat as well as it can impact on water retention/swelling. At later stages of cirrhosis they may actually recommend increasing salt as oppose to decreasing it, again something to discuss with GP/consultant.
Thanks for all your wonderful advice. I agree about the dietician everything she told us I was already cooking for him. Getting him to eat is the bigger problem.
Today his right foot is swollen but the other leg has gone down. We have had one appointment at the gastro clinic but do not have any contact numbers and are waiting on the next appointment which I guess will be around the beginning of November as we have to go the path lab two weeks before to get blood work done. He dated the form October. He obviously isn’t bothered about my husband in between appointments and getting to see the GP is another thing.
Hi pam sorry to hear about this i agree with david 5354 you need a better opinion than the gp especially if hes not feeling well my father had swelling in his feet with kidney problems and felt dizzy too best to get this looked into asap dont let him talk you out of it things can get worse in a matter of hours my father was the same he ended up in hospital after getting confused and saying there were cows in the room he had a water infection . Take care xx
He has just got up says he feels alright his legs and feet don’t seem so swollen I thick he looks a tiny bit yellow but he has been sitting in the sun and has that dirty looking skin that tans really easily so I can’t be certain. He says he doesn’t feel feel dizzy but will or cannot explain what he was feeling. He refuses to let me take him to the walk in centre. All I can do is take a very deep breath
Hi I know how you are feeling and you know when things are more abnormal. Check his temperature as he could have an infection as my husband did twice and I am now waiting for the third time because he won't pay attention to his body. Best wishes
My ascities went away but the oedema never did, my liver was decompensated. I was on the transplant list for 19 months and had the regular bad days. My blood was monitored by the hospital on a regular basis, I could not cope with the diuretic medication due to my kidneys. I would recommend seeking medical advice and keeping his legs raised in bed using pillows etc.
He has a real phobia about hospitals and doctors generally but I cannot get my head round his refusal to get checked out given his condition. I am relegated to the sidelines watching.
I can’t offer any advice or help to your husband but I am also a wife who has to take a deep breath now and again when my husband has his head in the sand (or more commonly, up his own behind!!) so I know how worrying and frustrating it can be when they brush off any symptoms or problems while we are agonising from the sidelines... there’s lots of support in this group for you as well as him!!
To stand by is so frustrating and it terrifies me that he will not listen. His haemorrhoids have started to bleed a bit and I am scared for him. I have spent all day suggesting, pleading, nagging that he let me or he should call. He tells me I am worrying about nothing can he really be so naive? I am supposed to go to work tomorrow and not be worried.
Good afternoon Bs1524,
sorry to hear about your husbands poor health.
As the other forum members have suggested, you should consider contacting his GP or liver specialist for advice/support/earlier appointment.
If his condition is deteriorating you should also consider contacting 111 or 999 for urgent assistance .
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
First post and I am a wife of a sufferer
Alcoholic Cirrhosis 
Ascites for over a week 
Scared and worried
Feeling guilty ☹️
