Cirrhosis, bloods improving but edema worse

[Rshc]

hi partner diagnose decompensated cirrhosis 22.12.21 - stopped drinking immediately . He was very ill, just had copies of bloods from the last 3 months, everything is slowly improving, bilirubin 60 down from 250 in Dec, ALT, ALP & platelets all within normal range, INR improved from 1.7 to 1.5 CRP down from 41 in Dec to 17 start of March, albumin still low at 24 but has improved slowly. He had awful edema in hospital but resolved whilst the ascites still remained (currently drained every 3 weeks) Within the last 6 weeks the edema has returned, all throughout his legs top to bottom he is very uncomfortable any thoughts why symptoms might be worsening whilst bloods improving. Not all symptoms, he is MUCH less yellow, no nose bleeds, no bruising

Its hard to keep him hopeful for the future at the moment as he can hardly move. Any advise or words of hope so gratefully received x

[Aotea2012]

I’m not a clinician so can’t really give clinical advice just a bit from my experience. As my bloods normalised my ascites and oedema went down. Albumin was the main flag which as you say is still low for him. I was encouraged to walk - even if a bit difficult with the swelling - as it gets the circulation going and aids a reduction in oedema. So if he can avoid being immobile then this would help him enormously. I assume he’s been given dietary advice and is eating a low sodium diet as this is important. It’s probably worth giving either his GP or consultants secretary a call tomorrow as I’m not sure if he’s on diuretics, and it may be that his dose needs adjustment. A clinician will need to assess this.

[Rshc in reply to Aotea2012]

thanks for reply. He has only just restarted a very low dose of diuretics as last time his sodium dropped too low and he had to be readmitted. Is there anything we can be doing do you know, diet wise to improve albumin? thanks

[CarpeDiem11 in reply to Rshc]

Usually they would prescribe protein shakes and high protein yoghurts (mine dropped to about 26, but is back in normal range now). The hospital can prescribe the protein shakes, but not all GPs are happy to continue the prescription. You can make protein rich snack bars yourself (health food shops sell protein powders) in the meantime and try Greek yoghurt with chia seeds added (both high in protein). When protein levels are this low, they usually advise having a snack before bedtime too (either carbs or protein) to stop the body feeding on muscle while they sleep. When you are unwell, they recommend eating a higher quantity of protein than usual becuae the liver is not processing the food as well as usual. The quantity needed will depend on the person's weight. Ask to see the dietitian for help with this. They should really have given you some advice already.

There are videos on YouTube or elsewhere which will recommend protein recipes, but beware those that use too much sugar. All the very best.

[Aotea2012 in reply to Rshc]

I echo what Carpe Diem has advised. Protein is incredibly important in liver disease and I’ve kept my protein levels to about 70 to 90 g per day. Protein shakes kept me going at the start, I had Complan. My appetite was poor and it was the easiest way of getting protein inside me. The diet changes a bit from decompensated to compensated cirrhosis but protein remains a key factor in maintaining health. So chicken, eggs, cottage cheese, full fat milk, turkey, pulses, low sugar/salt baked beans, Greek yogurt. To give you an example of some high protein meals- I do chicken fajitas, chicken curry, Cajun turkey. If he has two chicken breasts a day that’s 60g of protein. A pint of milk is 15g. So it’s not hard to get up to those protein levels. Also a snack at bedtime is essential. I got partial to fruit loaf with butter...but there’s lots of options.

[Rockefeller20]

Hi there I’ve been through everything that your husband is going through and more, and know how difficult and heartbreaking it is for you also

You never mentioned if he’s been assessed for a transplant or not, I was listed Xmas 2018 and three months later was called in to Birmingham hospital for a liver, I do wish you both well and if there’s ever a need to chat don’t hesitate pls, keep your spirits up!! X

[Rshc in reply to Rockefeller20]

Thank you. He was only diagnosed 3.5 months ago and stopped drinking at the same time and hospital say they hope he will re compensate so too early to talk transplant I guess

[Ubwa]

1. Be positive . When I was diagnosed; I tried to continue my usual routine as much as possible,and the messages from the docs where at times world ending, yet I pushed though.

2. EAT. Others have said it but I’ll re-emphasise it. Your partner needs to think they are trying to climb Everest or run a major marathon.Their liver will scavenge all it can to try repair itself. This is crucial . I know, I’ve gone through this twice and and can’t over emphasise how important it is

[Ubwa in reply to Ubwa]

Too add, my bilirubin was >800

[Rshc in reply to Ubwa]

Thank you, yes he is eating well. Fresh fish, loads of fruit and veg, chia seeds, limiting salt, fortisip, eggs etc

[Ubwa in reply to Rshc]

Be careful with fortisips..better than nothing but high in fat…ask to be prescribed renapro sachets/shots. Again I will labour the point..nutrition is vital.I have been there, got the t-shirt twice…

[Rshc in reply to Ubwa]

thank you so much for taking the time to reply

[Ubwa in reply to Rshc]

I wish I could be more insightful, yet I currently am in a country that rhymes with ‘crane” doing things with my cirrhosis people would think impossible. It’s not a death sentence, positive mind, positive outcomes

[Rshc in reply to Ubwa]

thanks, have just read your previous post. You have been through a lot and come so so far. I will get my partner to read your story as its a real inspiration. He is feeling pretty miserable right now as his legs are so swollen he can hardly walk and he loves to take our dog out for walks Can I ask, did you have edema amongst all of your other symptoms?

[Ubwa in reply to Rshc]

Yes, but not due to my liver. I can share his pain , as I am currently waiting for major surgery on both my knees...

I know he feels down at the moment, but that will end up hurting him. Yes he now has this "thing" to deal with, but you get a choice to some degree on how much it will define you.

When I got out of hospital after 2 months in 2020, and got over COVID that I left with, what did I do? I went and purchased an inflatable kayak and with my brother, we spent the day kayaking down the river severn until it got a leak and I had to swim to shore :). It was hilarious and more importantly it showed me that I can still do things I used to. Yes, i have to be careful, and my specialist constantly shouts at me along the lines of "YOU DID WAHAAAT"?" But hey i'm still smiling and continuing on. But this is my story, and everyone is different.

My uncle was not as fortunate as me and we lost him to liver cancer in December. Cancer did the damage yet the outcome of the damage is the same no matter the mechanism of injury,. I saw what, to be honest, should have been me. Death due to liver failure is not nice. It was scary. Hence why I live my life to the max every damn day and don't apologise to anyone for doing it.

[Cat-B]

Has he cut out salt from his diet? Everything needs to be home cooked so you know not even “a pinch of salt goes into his food “ also a very high protein and carbohydrates diet. The very high protein will increase his albumin and reduce the fluid leaving his blood, the needs lots of calories to work and even more to try to repair its self. I presume he’s on spironolactone and thiamine and the lovely lactulose. Try focusing on his diet and offer little and often ( I ate a very small amount ( I started with a ramekin dish) every two hours, I had to eat by the clock as I never got hungry) Good luck

[Rshc in reply to Cat-B]

thanks, we are mostly cooking from scratch, no added salt which was the instruction from hospital. He is VERY hungry which I guess is a good thing. I will try and increase protein even more

[Aotea2012 in reply to Rshc]

It took me a bit of time to get my appetite back so it’s good he’s hungry as it’s easier to get the food in. I had to force food down and started to look at it as fuel rather than something enjoyable. I had a great dietician who made the diet sheets interesting and helped me translate them into really nice meals. Taking salt away was hard to start but I’ve found spicing and adding herbs really helps. I’m quite a keen cook so now have a lot of great meals which are also spot on for my dietary needs. When I was decompensated my calorie intake needed to be high but after a while I started to put on muscle mass and weight and the dietician helped me to taper the menu. I’d say mine was now a high protein Mediterranean diet. I eat a lot of chicken, turkey and fish, but have also found plant based protein interesting as well. Indian recipes that use chickpeas and lentils have become quite a staple for me. I’ve also found a west African dish which is gorgeous. Chicken in peanut sauce. The recipe had peanut butter but I found the salt content high, so I put unsalted peanuts in the food blender and added a drop of water, bit of olive oil blended it to a paste and it became a very usable alternative. The paste when added to chicken with onions, chilli and tomatoes and casseroled is delicious. I use skinless chicken thighs as they are tastier. It’s very high in protein, potassium, magnesium and calories.

[Rshc]

brilliant thanks. So helpful.

[Sarahl77]

Ask clinician if it possible to have protein shakes you can get them on prescription as long as hospital starts the process my partner had the same and there was talks of wrapping the legs its a old thing they used to do my partner was in agony with his legs and found it hard to stand but contact ur consultant and they can advise you as best

[Rshc in reply to Sarahl77]

thank you so much, he is drinking 1 x fortisip a day - they prescribed 2 but trying to get protein in other ways. How are your partners legs now if you don't mind me asking

[Sarahl77 in reply to Rshc]

I lost my partner Jan 2021 hun but I still like to help people and advise them if I can on this situation my partner was in hospital so many times its so hard to live with x

[Rshc in reply to Sarahl77]

I am so sorry to hear of your loss and you are truly a wonderful person to still check on here and offer advice and perspective to others. I am so grateful to you for sharing your experience

[Sarahl77]

Thank you I will help anyone that needs advice as I know what it's like first hand to live with someone with cirrhosis it's not any easy illness to live with