Decompensated to Compensated

[Longan]

Hi All

3 Years ago I was diagnosed with Cirrhosis and Decompensated Liver., and was placed on the transplant list. Now after being off the booze my MELD score has dropped, no longer a candidate for a transplant and turned to be compensated.

I am feeling a little better, but still suffering from acute fatigue and even though consuming specified amount of calories weight gain is painfully slow.

I have been like this for over a year now, does it get any better, does the fatigue go away and weight gain start.

Thanks in advance

[redpoint72]

Hello longan.Well thats good news,that your meld score has lowered,and you are now compensated. You are certainly heading in the right direction!!!.

As to regards the fatigue, im similar really, its nearly 4 and a half years since I was given cirrhosis diagnosis, and still some days of not having much energy at all. As far as I can tell,its a pretty common issue with liver disease/cirrhosis. I do walk everyday, but somedays I have to force myself!!. Most certainly, if i overdo it 1 day,the following day I won't be able to do so much....so you just have to go with the flow of it really.

Wondering bout your weight, did or were you ever prescribed by your liver nurse or consultant any protein shakes /drinks etc,such as ensure plus, which is what I was prescribed, or there are several others, inc fortisip?. I've regained some weight and muscle mass, but not as much as I expected after over 4 years. Sounds as though you were given access to a dietician though.

Good news that you have been delisted from the transplant list.

Its just things seem to take a long time to see improvements, I understand where you're coming from.

Take care. Chris

[Longan in reply to redpoint72]

Hi Redpoint

Thanks for your reply. Yes I do take protein shake supplements. For the first 18 months it was all I had as I was fed through a tube up my nose, dim dark days indeed.

I notice from other posts of yours that you had Paracentesis for ascities, I was doing it every week for a few months, most drained in one session was 15 Liters but on average 6-7, then ascities just went away gradually.

I am just impatient I suppose, I want fatigue to go away and muscle growth / weight gain to happen overnight but it takes time. Today for example during exercise (YouTube trainers) I was able to stand from sitting without using my hands to assist for first time since I was ill, so progress is being made.

[redpoint72 in reply to Longan]

Yes ,unfortunately it takes along time for things to settle to some extent. Oh yes I've had several paracentesis, I think the most drained in 1 session was 13 or 14 litres if I remember rightly, but I probably dont!!Yes same as yourself, fluid slowly got less and less....as we have become compensated .

You see,you are making progress,look at today....a positive😀. Baby steps does it.

Take care. Chris

[Chick_atee in reply to Longan]

That is great you are compensated. Well done on your hard work achieving that and abstaining from the awful poison alcohol. I too have the weight loss, muscle wastage and take fortisip and food link shake. My ascities won’t go even with deuretics although seems to not be getting worse. Haven’t been drained but worried I might be facing it at some point. I hope to be compensated one day like yourself. Hearing that gives me hope.

Just want to say I can relate and it’s a hard journey. The weight and especially the fatigue is endless. Quality of life has changed drastically but here’s hoping we can stay positive and keep going to achieve a good level of living.

Good luck.

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Longan,

We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

[Longan in reply to BritishLiverTrust3]

Thanks for the support

[EnglishRoots]

Hi Longan,

I’m glad I’m not the only one .. I too was diagnosed June 13,2019 with decompensated alcohol induced cirrhosis been compensated for a bit now. I haven’t had a drop of booze since . It took me some time to gain wait as well. I was 95 pounds 3 years ago now I’m about 126 (depends on the day). But for a long time I couldn’t seem to get past 105ish. My hepatologist at the time told me I could liberalize my diet a little from time to time. I was so strict with the sodium etc . So I am still very careful with sodium and salt, but once I was able to handle a burger and fries I went for it.😎 Again it’s maybe twice a month. I know what you mean about the fatigue….I find it so easy to fall asleep if I am reading, or watching a movie. Though it’s such a great sleep now, not like when I was drinking round the clock! But I know the feeling of having to push myself as well. I turned 60 in January maybe age has something to add?🤔🥴

Take Care,

Susan

[Greengal314]

hi Longan,

Great job! I will reiterate what everyone says about protein. Protein will keep your energy levels up longer and help the body rebuild muscle.

Protein/energy drinks are a good supplement, but if you can get some from meat, eggs, nuts, etc. even better.

I recommend keeping a food journal. I kept a journal of everything I ate for a couple months until I felt so good, I forgot to because I felt so well. So I stopped. Lol. I originally started the journal mainly due to indigestion which I had thought was from diverticulitis.. which may not have been the case.

The journal is helpful to see what works and what doesn’t. Also helps with sodium

Anyway, you‘l get there. Keep plugging away. 😀