Decompensated liver cirrhosis - British Liver Trust

British Liver Trust

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Decompensated liver cirrhosis

Dotandken
Dotandken

Diagnosed 9 months ago, stopped drinking immediately, after heavy drinking for years. On transplant list, I have been well lately with improved ukeld score, from 58 down to 49. Not seen a consultant for months due to covid, would I be able to reverse effects of decompensated cirrhosis or is it just a temporary situation?

24 Replies
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Trust1
Trust1Administrator

Hi and welcome to our forum,

Well done for stopping drinking alcohol which will absolutely help your liver function.

You will already be aware that your liver is very damaged, hence you have been listed for transplant. Can you get in touch with the transplant coordinating team to have a chat about your specific concerns? They have access to your medical test results and are best placed to safely advise you.

Keep us posted and stay safe

Trust1

Dotandken
Dotandken in reply to Trust1

Thank you, also is it normal to have severe joint pain, which is a lot worse at the moment

Trust1
Trust1Administrator in reply to Dotandken

Hi,

Any symptom should be discussed with your doctors and assessed.

Dotandken
Dotandken in reply to Trust1

Thank you for listening. I will try to speak with someone.

Answer is probably not. One in 10,000 maybe, but don’t hope for that. Try to stay well, eat well and be as strong as you can for your transplant.

Dotandken
Dotandken in reply to cammeag

Thank you, I also wondered if they would de list me from transplant list! It is a strange illness to live with and sometimes I feel like a bit of a fraud.

cammeag
cammeag in reply to Dotandken

Only you and your consultant know exactly how bad your liver disease is. My consultant told me to not even worry about transplant yet, just take each six months the same as you have. If anything changes you will know and so will we. So try and have a chat with consultant. If that’s impossible, write to him, they are normally very good at getting back, albeit they have secretaries.

Dotandken
Dotandken in reply to cammeag

Thanks for your help, trying to get hold of people is a bit of a nightmare. But thanks for your input.

Bootandall
Bootandall in reply to Dotandken

The short answer is yes, you can go from being decompensated to having compensated cirrhosis.

It's probably not something that you should rely on, but I am sure it happens with some frequency, as evidenced on this forum.

Dotandken
Dotandken in reply to Bootandall

Thats interesting, iwill keep doing what I'm doing, and take each day at a time. I have recieved an appointment for an upper body scan soon so that should shed a bit more light. Thanks for your input.

Bootandall
Bootandall in reply to Dotandken

Dotandken Also just wanted to throw it out there, joint pain may be worse "feeling" due to not drinking, l know l personally felt no pain (haha, but not really). Ice, heat, and light stretching may all help.

Dotandken
Dotandken in reply to Bootandall

Maybe, but I haven't had a drink for 19months now, maybe fast approaching the big 60 is contributing!! And severe lack of sunshine! But on the upside, I didn't think I was going to see this birthday!! Also made mistake I meant I was diagnosed 19 months ago. Electrolytes playing games.

Bootandall
Bootandall in reply to Dotandken

I have a Rx for vit D, it does seem to help bone pains, but levels must be closely tracked (fat soluble, so can build to toxicity). I'm sure you'll be getting a DEXA scan when Covid-19 rates level off and things go back to "normal." It appears that we are all in a different place then we were before, a "holding pattern" of sorts. Not to worry, just gives more time to heal.

I've gone from decompensated liver cirrhosis to compensated. My child Pugh score was 15, highest possible and it's now down to child Pugh score 5, which is lowest. I have no symptoms left at all, and I'm not on any medication. Of course, there will be still the danger of liver cancer for the rest of my life, that's why I have check ups every six months.

No poison for my liver anymore. Alcohol of course, but I would also suggest no smoking (if you do) and also no medicine that's not really needed (for example no usage of pain killers etc). And for me was also important to find another lifestyle, the liver doesn't like anger. Feel free to IM me if you want further advice.

🙂

cammeag
cammeag in reply to NinaNon

Nina this is what professionals say,’There are limited treatment options for decompensated cirrhosis. At this later stage of liver disease, it’s usually not possible to reverse the condition. But this also means that people with decompensated cirrhosis are often good candidates for a liver transplant.’. Not trying to correct you but we shouldn’t raise hopes. Yes it may happen,as you claim, most of us are still living through it not trying to elevate our hopes to have them smashed!!

NinaNon
NinaNon in reply to cammeag

Well, I only provide people with facts. And my specialists say it's NOT rare for people to move from decompensated state to compensated. It's not a rare miracle.Of course, it's still cirrhosis.

Recently, a German musician died. He was decompensated 25 years ago, stopped drinking alcohol, went into compensated state. Unfortunately, 25 years later, due to his cirrhosis, he developed liver cancer.

So, in any way, cirrhosis is a really serious condition and can get you in the long run - but still, he got 25 years in good health and without a transplant.

NinaNon
NinaNon in reply to NinaNon

A small note about hope: when I first got my diagnosis, a doctor told me I'd die soon. I asked if I stopped drinking, I could survive. He said no, it's too late.In your words, he didn't want to give me "false hope", right?

Well, I didn't believe him. I stopped drinking, went to see my hepathologist, she's still treating me. At first, she didn't say much, and I'm thankfully for that. When I look at my results and symptoms back then, with all the knowledge I now have, I have to say that the doctor was right. Death was not far away from me.

But how can hope ever be "false"? When you have no other way left, hope it's the only thing to hold onto.

You can still not be successful - but at least you've tried.

I wish that doctor back then would have been able to give me some hope - my way would have probably been a little but easier. I've been scared a lot. I've been sad a lot. Still, I got the strength to fight - but I'm thinking about others who maybe don't have that.

So, I feel it's my duty to give some hope. And it's not false. Because I'm here. Alive and tremendously thankful for that.

Dotandken
Dotandken in reply to NinaNon

You have a fantastic attitude and outlook on life, your kind words and encouragement should lift a lot of spirits! As you will understand, some days that positive mood seems like a very distant memory, especially at the moment. Hopefully if every day life returns appointments will be made and consultants seen. Until then I will have my scan and keep having monthly bloods taken, and be grateful that without the demon white wine, things will continue to improve!

NinaNon
NinaNon in reply to Dotandken

Thank you 🙂I know what you mean, I've also had my dark days. Concentrate on all good things, celebrate every improvement.

Dotandken
Dotandken in reply to NinaNon

Well done you! Have you done anything other than stop drinking? And what meds were you taking?

NinaNon
NinaNon in reply to Dotandken

First of all, stopping alcohol is really, really important. 🙂 But even one glass, nothing. I've also tried to avoid any other toxins. I've never smoked, but as liver cirrhosis is my "only" disease, I also never needed any pills. During the first two and a half years, I had blood tests and ultrasound every three months. The results were really very slowly improving. That condition knows how to test your patience!

My blood was also tested for various vitamins and minerals, and supplements were given when needed.

My observation is that the liver is highly linked to mental well-being. My liver specialists told me to rest, to concentrate on myself. I took that serious and changed my lifestyle a lot.

You asked about medication - at first I took furosemide and spironolacton to treat the ascites. After a few months, I only needed spironolacton. I could stop taking that and so now I'm without any medication.

My spleen was enlarged, it's normal size now.

Blood tests are "normal" for a person with cirrhosis. Major problem are still low platelets. But they are confident that'll get better in time, too.

But as I've said, it's not a miracle, it was a lot of work, and, probably most important: patience!!!!

cammeag
cammeag in reply to NinaNon

I am really glad you have done so well. On here, as you know, we see the bad as well. Your story actually is quite inspirational but no the norm. As someone in the same position you were, I do exactly what you did. I was given no direction on this from my consultant and dietician but prayer, determination and a lot of study made me keep going. I am now 19 months after my liver failure and diagnosed with decompensated liver. My kidneys were close to failing too. Slowly I feel well again. But my diet is strict, my lifestyle modest, my rest invaluable and my prayers still take precedence. Please, keeeep going and encouraging all you can. Regards, David.

NinaNon
NinaNon in reply to cammeag

Thanks for your reply. 🙂 I know how hard it can be. And really, I'm so thankful each day. I just want to give some hope, especially as it's such a hard disease. Each day I'm blown away at how much the body can achieve - it surely is incredibly hard work, but it's in fact work for the only person you can't live without - you. 🙂

I wish that your work pays off, too. Keep the faith! And feel free to contact me whenever there are questions.

How long after being listed have you all waited for transplant?

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