I am new to your group so please be kind it is not me who as a liver problems it is new Hubby married 7th August 2021 and I fear that I may lose my soulmate, he’s as had lots of health problems including a very scary time in the ICU blood clots on both his lungs and pneumonia but that was back in 2017 it was touch and go for a while but he fought back thank goodness, But earlier this year in May he started with very swollen legs and burning red rash on both his legs rung the GP who prescribed antibiotics but because of his history with blood clots wanted he to get it check at A&E so he when under protest and that is where is liver journey began Dr who examined him felt a lump in his stomach so sent for CAT scan he also had scan on his legs (turn out he had blood infection) we saw the specialist who wanted him to go for a colonoscopy and endoscopy which they took biopsy from his colon and intestines all came back free from cancer, but CAT Scan had found some nodules on his liver so he want him to have another EUS endoscopy 14th June 2021 so they could take some biopsy from his liver within a week of having the EUS he was rushed in Hospital in agony he was diagnosed cholecystitis and incidental finding of splenomegally and splenic varice. Gallstones with pericholecystic oedema and fluid likely to represent acute cholecystitis so he was sent home having been put on the waiting list for his gallbladder removal surgery and a low fat diet sheet.
Flash forward to 11th Nov we had not heard anything about his EUS so I got on to our GP to find out what’s was happening within a couple of days the specialist rung My husband and he was fuming as he did not received the EUS results he managed to track them down and said he waited him to have another CAT to check if the nodules on liver had stayed the same or got larger still haven’t hear back on those results. But he got appointment to see the surgeon about his gallbladder operation 8th Dec who give us more information than everyone had before he told us he couldn’t do the operation or any operation at the moment as it would be too dangerous, he said his liver was so swollen and engorged it was pushing on his other organs his pancreas ,gallbladder are all swollen all his bloods tests came all abnormal and he’s has fluid in his tummy and they don’t know what has course it as he doesn’t drink and until they know the cause they can’t treat it, which I thought was crazy! He had a fibroscan on 14/12/21 and his score was 34.5, the nurse advised low fat diet which he’s been doing and excise we have a treadmill ordered. He’s got a telephone appointment with the specialist on the 17th January. I need some advice on want questions to ask the Specialist as my husband is in denial thinks its a mistake, as he as very few symptoms his arms have gone very slim, he’s lost his body hair and he’s moody and tired and weak all the time. I just feel lost and fear I am going to lose childhood sweetheart we have been together since I was 15 and he was 17. Sorry for the very long post Thanks if you have made in to the end ❤️ Deb.x
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I think the hepatologist has to try to find out what is the reason of his liver serious damage. As you said alcohol is not the issue but they are many other conditions/diseases that can be the reason of the problem. . Maybe NAFLD/NASH is involved but only Specialist can say something after testing. Stay positive and take care.
Hi MINTVCXThanks for read my long post I think it is NAFLD as he was told that his Liver is scared and he also said some about the veins been large? Trying to stay positive I know there a lot people worst of than him but its all a bit of a shock you know for both of us. take Care and Thanks Again x
Don't worry everyone here is supportive. Your poor hubby has been in the wars. First and foremost people here will post a little about themselves to show they have been there and much worse but are still here managing very well. So no need to worry, once he sees the consultant and gets the information you both can take it from there. There are a few people on here caring for their partner and they do an amazing job, they will happily give you their advice.
It is possible his arms arm slim because our livers need protein and apparently it will cause muscle wastage. I tend to eat some walnuts or almonds before I go to bed so I have a little protein on board.
Moody, yes, that's me... Liver problems does cause depression and I have been happy and short tempered throughout the day... but understanding that it s a liver problem helps put it into perspective. Tiredness is another problem, I tend to nap when I can, but I cannot do that at work (unfortunately) so being tired also can make me moody.
If his kPa is 34.5 there is no mistake (I think it only goes to 75 so he's half way), so no reason for him to be in denial.
Katie and others will pop along and give you some advice about what to ask the consultant.
Hi DaveThank you for taking the time to read my long post Andrew that’s my Husband jokes that since he turn 50 it’s been all downhill, Andrew was my Carer as I have RA since my early twenties and kidney disease currently running at 30% due to all medications I had to take.
He’s a big fella but as lost a lot of weight over 4 stones which is good, but with being new to all this I am just trying to figure things out on my own I know he needs the avoid red meat salt and sugar but it hard to know what he can have and not have specially over Christmas we all had a Christmas chicken salad🤣😂🤣 I been making him fruit smoothies try put veg in them like beets and kale but won’t entertain them. I will try the walnuts and almonds before bed, I have read a lot of people struggle with getting to sleep thankfully that’s not a issue for Andrew
I don’t think he realises how serious this illness is its hard as there no pain or little physical signs and he feels fine in himself apart from extreme tiredness but it’s good to have this forum and all the lovely people who are going through the same thing so I don’t feel so alone in this nightmare Thank you so very much Dave.x
As he has been there with you since you were 20, you know just how much it means having you there for him now. Support from a loved one is invaluable.
Losing 4 stone in weight is absolutely fantastic. I really like the fact that you all had the same meal, it's a kind and thoughtful gesture and makes him feel you are in this together .
I really dislike vegetables but another member suggested spinach and kale (as these are not strong flavours, also I do not put in any of the kale stalk only leaves) I put in a banana (for potassium), blueberries and a little water, it tastes just like a banana and blueberry smoothie. So kale and spinach are the two base ingredients and I often look for those containers of ready to eat diced fruit (that has been reduced in price ) and use those, Mango and Pineapple is also really nice.
You are correct, liver disease damages our livers and when something alerts us to it, the damage has been done, but some liver disease can be reversed or it can be managed very well, especially with a caring partner.
Now this part is just as imnportant, you cannot care for him to the point that it becomes detrimental to you, your physical and mental wellbeing is vital so, make sure you have proper breaks, not cups of tea I mean go out shopping, a spa day or anything that can recharge your batteries for carrying on.
Hi DaveYou are so right we have each other to lean on and care for I know there will be hard days ahead but we can get through this together ❤️
Thanks again for the invaluable advice I have a good support with my Mum and Dad and a really good friend who I can talk to, and hopefully when we have spoke to the specialist we will find out what the plan of action is.
I have some Kale in the fridge so I’ll try putting a bit in and see if I can get away with it by disguise it with kiwi fruit
You take care with your own health Thanks Deb.x
Hi Deb,
Welcome to our forum. A discussion with the consultant responsible for your husband's health is very important to clarify diagnosis, stage and management.
We have some useful 'Questions to ask your doctor' on our website;
HiThank you so much for your advice I will print off the questions to ask about Cirrhosis and hopefully get some more information on want is happening with my Hubby’s illness and what to plan is to deal with this terrible disease.
Yes we are in the U.K. so it’s good to know that the nurses are there for my hubby if he feels he needs to talk.
Thank you for the invaluable information Take Care Deb..x
Hello, you have probably had the advice you needed but you kindly asked me about endoscopy. 99% of other people I know say their experience was fine, it's just I'm the 1% that have a bad gagging reflex. All that happens is you have the choice of anaesthetic, ie, throat spray or light sedation. The hepatologist goes down to find any varacies ie parts of tummy that may have weak viens , there are 1 senior looking at the camera and nurses who monitor heart and husbands wellbeing. If there are varacies then he can see them and decide whether he needs any on the spot which hepatologist would put a band like a small rubber band on any he thinks need attention as he has access to his endoscopy to a small tube he can band them if needed and it his done in a short time. With throat spray hubby can wait a short time and you get a hot drink and biscuits with sedation you have to wait an hour before thirst is available. I hope this was useful, and I give my love to you as you must feel distraught and I hope he listens as your his legal next of kin and you can decide what he needs xxx
Hi Jules45Yes he as already had two endoscopy the second one being a ultrasound Endoscopy EUS which is what the Dr’s think caused his cholecystitis and sent him straight to hospital, they the think Doctor who preformed EUS either nicked his gallbladder or bumped it causing it to get inflamed ☹️
Thank you for your reply and your Love that so kind of you and I send you my love to it nice to talk to people or going through same makes a little easier to cope with, I think he’s starting to realise how serious this disease is, but he doesn’t what to talk about I suppose we all deal with things differently! Sending lots of love you take care Deb…xxxx
Hi, When Mum was poorly and on a low fat low salt diet we got a referral to a dietician who gave us advice on what she could and couldn’t have. Our butcher made low fat and salt sausages for her. We cooked salmon with rice, carrots and green beans. I made white sauce instead of gravy with pepper and nutmeg to give it flavour. Kale do low salt stock cubes. I hope this helps give you some ideas. I found the diet the hardest part of looking after Mum. Your not alone.
Hi Readlots Thank you for the advice I’ll see if I can get some of the Kale low salt stock cubes I have been using nutmeg and pepper plus other herbs and spices the white sauce is a really good idea which I will try, it’s only when you start looking at the ingredients you realise how more salt and sugar there is in foods. I been make his meals from scratch so I know what exactly wants going in it. I found a great alternative to potatoes that as low carbs it called Celeriac it is a ugly vegetable but my Husband loves it. Your right the diet is a mine field, Hope your Mum is doing better 🤞All my ❤️ Deb…x
Hello Deb... you really need to know what stage of Cirrhosis Andrew has. Then get a good dietitian, I was surprised when I was told that I was overdoing my diet. She actually said "you are going too far" I needed things that you wouldn't believe to help my liver. I wrote this just because you wrote "a substitute for potatoes". You need to check what he can and can't have.....😊
Everyone's diet is different due to the condition of the liver... Good luck with everything...🤞
Hi DannyHope your hospital appointment when well and that you didn’t need the biopsy 🤞
They didn’t keep Andrew in Hospital they took a load of bloods and he had a scan on his leg because of the rash as they wanted to check it for clots with his history but they were clear which is good and the diagnosis was as we expected another bad bout of Cellulitis this is the 3rd time so more antibiotics . As for the stage of cirrhosis We have just received his fibroscan results this morning liver Stiffness of 34.5 Kpa and an IQR of 39% no idea want that means 🤷🏻♀️ The only thing I know is Kpa goes up to 75 at the highest. He needs to lose weight and was told by the Hepatology specialist nurse to eat three meals a day which he doesn’t making the carbs the smallest portion that why I mentioned potatoes cause I found a vegetable called Celeriac that is low in carbs and is a good substitute to potatoes. Thanks Danny your a ⭐️ ❤️X
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I mean go out shopping, a spa day or anything that can recharge your batteries for carrying on.
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