worried about the future

[Hopeful85]

at what stage of liver cirrhosis, might you need a transplant?

does anyone have any experience of an iron infusion?

how serious is cirrhosis of the liver and is it a terminal illness; am I going to die?

sorry for the questions but I can’t sleep and my brain is whirling around . I’m usually quite positive about it all but lately I have been feeling quite weak and low and emotional.

Hope you’re all doing ok and look forward to hearing back x

[Aaron22]

Yes, I have had iron infusion. Do not worry . Half an hour, and all over, no pain 😊

[Hopeful85 in reply to Aaron22]

Thanks for your reply .

Oh that’s good to know, hopefully will help my low energy and mood

[AyrshireK]

Cirrhosis is of course serious but it is possible to live a very long life even with the condition especially if the cause of it is identified and whatever was attacking the liver is stopped. It is then important to try and keep the liver in a compensated state - this is when the liver (although seriously scarred) can still carry out most of it's 500 different functions.

The problems come when it tips into what is called a decompensated state and this is when it is struggling to carry out even the most essential to life functions and where the more serious, potentially life threatening symptoms arise.

Transplant is considered as the last possible line of treatment and will be considered if the liver is continuing to fail and all other treatment options have been explored. It is a life saving operation only and they don't do it just to improve your quality of life. Before someone is listed for transplant they undergo a very rigorous assessment which exams them physically and mentally to check that (a) transplant is needed and everything else that could be done has been and (b) to check you are physically well enough to actually go through the transplant and recovery. Transplant isn't always a golden ticket to life renewed as some folks on here will attest to, sometimes you feel more poorly post op, some people go on to develop issues that require re-transplant and sadly some just don't make it off the operating table.

The BLT has a well worded and not too scary page all about cirrhosis - it was where I first turned when my hubby was diagnosed with decompensated cirrhosis back in April 2012.

britishlivertrust.org.uk/in...

Katie

[AyrshireK]

Needing an iron infusion must mean you have low iron levels - anaemia ?? Have they identified the cause of low iron? Have you had a bleed? (have they done a gastroscopy, colonoscopy?)

[Hopeful85 in reply to AyrshireK]

Thanks for your reply

Yes I have very low iron. I was due to have an op for something unrelated and this is how it all got picked up. They are saying I am not well enough to survive an op so referred me for an iron infusion and to keep taking the medication I’m on as I’m at risk of bleeding out because my blood stopped clotting properly .

I have had a colonoscopy and endoscopy. They said I had mild varices stage 1 but barely visible

[Aotea2012]

I have cirrhosis and I’m living a normal life. In fact I’m travelling around Andalusia at the moment. I was severely ill in hospital when diagnosed. I had a deep rooted infection which had tipped my liver into acute on chronic liver failure. Mine was caused by alcohol and I stopped drinking the day I was admitted to hospital in March 21. Since then my health has improved immeasurably. I had anaemia to start with and had a couple of infusions. They were fine and I felt much better after them. They couldn’t find the cause and I had an endoscopy and a colonography. At the time I had 2 small grade 1 varices (these had gone on my most recent endoscopy) and they weren’t felt to be the source. The colonography was clear. I was having bad nosebleeds…my bloods by that point were ok, so INR and platelets were normal. They decided to cauterise my nose…the nose bleeds stopped and my anemia went too. So if they can find what’s causing it, it will really help. I don’t take any medication now. Anaemia is quite common in cirrhosis though. The treatment is regular infusions and/or iron tablets. I look after myself these days, good protein rich diet, no alcohol and a good long walk every day. I’m feeling better than I have in years. I don’t think about having cirrhosis until I come up for my 6 monthly check ups, and live a normal life. The anemia made me feel quite ill, hopefully they’ll either crack the cause as they did for me, or else get your infusion regime correct so that you feel well. Try to keep positive. Keep us posted.

[Hopeful85 in reply to Aotea2012]

That’s great to hear, thank you and well done

[juneblue]

Hi hopeful 85. All replies have been informative. I would add in the U.S. , The MELD score is typically used to determine eligibility for transplant, although other co- morbidities such as age, obesity, other health conditions etc are considered. It took my physician telling me” your going to die soon. If you don’t stop drinking alcohol “. Haven’t drink since. Alcohol is the easiest causation of liver disease to identify and treat. Stop drinking. Easier for some to do than others

You didn’t say the cause of liver damage in your case. I almost died twice in 1.5 years. At one time, I was in so much pain death would have been better. I no longer qualify for a transplant. That’s a good thing. My gastroenterologist said there is no reason I can’t live a long and healthy life” No more alcohol “.

I do still have severe scarring of the liver but it’s well compensated. Be sure to give your liver the best chance possible to heal. Your liver will fight for you, it just needs some help. Please don’t be afraid. And it is alright to talk about death. It makes it less scary. Remember we all are going to pass on eventually. I don’t know your beliefs but I do know it will be better for me on the other side. Just not yet. God bless you.

[Hopeful85 in reply to juneblue]

Thank you for your reply and well done 👍🏻

I think mine is pretty much alcohol related but they want to do test for a hereditary immune disease I think they said.

I haven’t drank alcohol for 5 months and I’m determined to never drink it again. I was stuck in a rut after covid and lockdown and things just spiralled .

I feel a lot better now other then the low iron etc.

I had a fibre scan last week to confirm it’s cirrhosis and need to get it to compensated. They referred me to a dietician/ nutritionist and said diet is very important and need to eat lots of green veg and protein.

Hearing it all in black and white and the talk of transplant or when you read about end of life really shocked me as I didn’t think it was that bad . I guess they have to be honest and did say that might not happen and I have a good chance if I follow their advice.

I am quite spiritual and I do believe in something, it’s something that really interests me .

I feel there is more than this and wasn’t meant to be here if that makes sense . Like you just not yet x

[Liver3]

Hi hopeful! It serious but not like your dying!!! I mean we're all dying at some point but living with Cirrhosis can be a long satisfying road! With little to no real side affects it you take care of yourself!I have not frank in 13+ years as mine is from blood transfusions!!!

My luck... either way Don't panic I did when I was diagnosed many years ago, now realizing if we take reasonable care of ourselves little exercise goes a long way!

Again with a reasonable diet, which I struggle with daily due to my craving for sweets!

You should be okay with a long life ahead stop the drinking and eat good. We should all enjoy life the best we can. You seem young with lots of life ahead of you!

God Blessings!

[cacld]

In my experience, iron infusion ideally depends on the dosage 1gm/20ml should be infused slowly in 3-4 hours.