Needing hope

[muffins7]

Is it possible to live 15 or 20 years with compensated cirrhosis if you remove the underlying cause and start taking really good care of yourself with diet and excercise? I've googled myself into a despair hole and I feel like I thought that was true for some reason but now I'm not sure. I guess I was hoping someone with experience or with knowledge from their doctors could weigh in.

[MINTVCX]

I think yes. May I ask if you have been diagnosed with cirrhosis?

[Hidden]

Hi muffins, I'm In the same boat as you with the worry only I've been more silly started drinking on and off while compensated also on strongest prescription options in opioid.

All cases are different from body to body but your doing the best possible chance for your compensated liver by not drinking, eating healthy and exercise that's all they told me and sent me on my way. Keep up the good work but if your still worried please ask your Gp or key hepatoligist what's best for you. Wish you all the best x

Ash

[muffins7 in reply to Hidden]

Thanks Ash. I appreciate you responding. Your story has been an inspiration and hope you are doing well. I guess I will just try and stay calm and keep focused on the things I can control.

[Kl61]

Yes my partner has had it for 20 years, 10 with no problems and a few issues since then that he got over well. He is decompensated now requiring regular draining and waiting for treatment for another condition before being assessed for transplant.

He stopped drinking as soon as he was diagnosed, and follows all advice, medication etc.

[muffins7 in reply to Kl61]

Thank you for your reply. This really gives me hope so I appreciate it. I hope your partner receives his transplant soon and is feeling better as soon as possible.

[Hidden]

Hi,

Have you been diagnosed with compensated cirrhosis? are you under the care of a liver specialist?

Best wishes.

[muffins7 in reply to Hidden]

I had another ultrasound in December and the results came back with increased echogenicity and mildly coarse echotexture this time. My GP put in a referral to a gastroenterologist since there are no heps here for more specialized testing. She won't say if its cirrhosis or not. My appointment isn't until the end of February and I'm very frightened. I'm only 31 and I just want the chance to live as long a life as possible with my husband. I quit drinking completely 2 years ago although had only binge drank on occasion for the year prior to that and excercise pretty regularly however prior to that i was a pretty heavy drinker for a bit over 5 years. I just am so scared and disappointed in myself for drinking so much when I was younger and would do anything to go back and change it. I keep spotting tiny spider angiomas or what I am pretty sure are tiny spider angiomas and GP said they may be as they blanch under pressure. I just know the diagnosis is coming and am very frightened and trying to cope.

[muffins7 in reply to muffins7]

I'm so frightened I almost don't want to find out for sure but I guess I need to. I guess there are things that need to happen if I have cirrhosis that can help give the best chance at staying healthy for as long as possible?

[pushthrough in reply to muffins7]

Hello Muffins, welcome to your safe place to talk about all things liver and emotion related. I'm very much like you except I was actually diagnosed at 38 this past December after 8 months of tests and waiting. Since you really haven't been diagnosed yet try not to worry so much because it's not going to change anything. Feel free to read my story by looking at my first posts because I was in a panic too. From what I have gathered on this wonderful place as well as my Mayo specialist I can expect to live a rather normal life for many years as long as I take care of myself and follow their diet, exercise, never ever drink again and don't take things that can damage my liver further. There is one person on here (I believe Katie) who says her husband's specialist has many people on the books that have had the disease for 20+ years and are still going about their day.

I had those veins you speak of after I got out of the ER but they went away pretty quickly. They could be from a variety of things and I'm pretty sure even severe stress and anxiety can cause them so do yourself a favor and stay off Dr. Google. They give worst case scenarios and are not accurate. You have to understand this, most of the things on Google are meant to scare the crap out of you so you don't drink. The doctors even sometimes do it in the states. I have compensated cirrhosis and have probably had it for some time now. Do I wish I could go back in time and not drink as much... sure I do, but I can't. You will find people on this forum that are in better shape, feel better, and look better having cirrhosis than they did before having it.

Everyone's liver is different so don't put a timeline on it. I feel great, I just have to sometimes take a nap. But show me one person who doesn't love a nap.

Keep us updated after you get checked out by your doctor!

[muffins7 in reply to pushthrough]

Thank you so much for your reply pushthrough. I've been spiraling and this calmed me down a lot. I am glad you are feeling better and will definitely update when I have a definite answer. The waiting is so hard, I am trying not to worry as I know it won't change the outcome but it's so difficult to focus on other things with this hanging over me. I guess I will try and focus on the thi gs I can control right now like my diet, activity and how I'm using my time. I guess I just was hoping that it may be possible to have 15 or 20 years ahead of me as opposed to just a handful of years.

[pushthrough in reply to muffins7]

Hello Muffins, you are very welcome. I understand the anxiety believe me. I even take medicine for anxiety and this disease pushed right through that medication in the beginning. I can't say for certain obviously but there are plenty of people on here that know or have relatives that have lived 20+ years with cirrhosis. Some of them even started off decompensated and then reversed back to compensated with far more trials and tribulations than I have had. I expect to live 20+ years longer and I'm hoping in the next few years science will finally figure out a way to repair our livers without having a transplant. They are already making progress so I'm hopeful! Wait until you hear from Zuko on here, he's a hoot.

[YvonneM60 in reply to pushthrough]

I have been diagnosed Chronic pancreatitis for 4 year . Nothing has been done . No interventions even though they can see 5 stones in my pancreas along with one blocked bile duct . I have just had a scan ,apparently I now have a few blocked ducts , thanks gastro for nothing ! I was diagnosed with portol hypertension with extensive varacies , again I was left .told me I would recieve app for a endoscopy but no urgency ! I had a massive life threatening bleed! I felt I was drowning in my own blood ! It was at this hospital in Bedford that I was told I had chirrosis !

I had bedn asking my specialist for years did I have chirrosis . Always told me No . He sent me for a fibro which told me No ! I was later informed at the Bedford hospital that the scan won't show a true feeling coz I have acities , hence the ultra sound today.

I have banding every 4 weeks .

I believe that if the 1st specialist had treated me for my portol hypertension then I wouldn't have had that bleed .

He could have given me beeta blockers as a preventative measure but didn't! I'm lucky to be alive . Thanks to a lovely specialist at Bedford. Mcr have done nothing but left me to deteriorate !

[Hidden in reply to muffins7]

Hi,

We appreciate that it can be very stressful waiting to see specialists and not having a diagnosis and it is very easy to think of the worst case scenario.

You have obviously done so well in stopping drinking alcohol, you should feel very proud.

We would suggest to focus on the fact no one has said you have advanced liver disease yet and to try to be kind to yourself.

Maybe you could speak with your GP to explain your worries and see if they can expedite the appointment, although this may be difficult due to how Covid has impacted the NHS.

If you are UK based and want to call our British Liver Trust nurse helpline on Monday we are open at 10am on 0800 652 7330 and we can have a supportive chat.

Warm wishes

Trust1

[Aotea2012]

I was diagnosed with cirrhosis in March 2021. I had no idea I had liver disease. I was admitted to hospital with a deep rooted infection which was when I was diagnosed. I was very sick. I’m quite an independent kind of person and I wasn’t able to walk or dress myself I was so unwell. I was terrified. That was my wake up call. They stabilised me and got me well enough to go home. I was determined to get better. Within a month of discharge I was up on my feet, a bit breathless, but had a flat tummy and normal size ankles again! Within 6 months, normal bloods and running a few miles. It’s 10 months on now and I feel better than I have for years. Knocked the alcohol on the head, haven’t drunk a drop since I was admitted to hospital. I’ve had to change my diet to a high protein, high calorie diet. I’m have a perfect BMI now. I’m reasonably strict with myself on diet but I can’t say it’s an awful existence. I keep everything in moderation. I’m exercising more and that helps my mental wellbeing too. My muscle mass has all come back and I’m fitter than I was in my 30s. My consultant says I have decades ahead of me as long as I carry on as I am now. If you walked passed me on the street you’d have no idea I have liver disease. Obviously, I still have a consultant follow up every 6 months and I take some medication, but it’s not onerous. Try to get an official diagnosis. Press them to explain to you how far things have gone. You may have fatty liver which is completely reversible. Worst case you have cirrhosis but the outlook is good as long as you follow the doctors advise and do all the lifestyle changes needed. Stopping alcohol is the key. Hope things go well. Keep us updated.

[muffins7 in reply to Aotea2012]

Aotea, thank you so much for sharing your story. You and pushthrough have really helped me so much today with your experiences, you guys have no idea. Your progress is inspirational and it's super encouraging to hear that your consultant said that to you regarding your changes and outlook. I'm so glad you're feeling better and it sounds like you're doing amazing. I hope to be feeling as strong as you one day.

[Hidden]

Im 27 and have decomp cirrhosis and I can say one of the best things I’ve done in past 7 months since it was diagnosed & I left hospital, is to just stop googling and talk to the liver nurses or consult about any worries, I know the worry gets overwhelming! It’s awful, I’ve come to the realisation all I can do is exactly what the doctors tell me, I hope your ok! x

[muffins7 in reply to Hidden]

Hi Lars,

Thank you for the advice. I need to follow your lead and not Google anything. It just causes such distress and won't change anything. I hope you are on the mend soon!

[kensimmons]

Muffins you posted some numbers of yours three months ago.

healthunlocked.com/britishl...

None are consistent with Cirrhosis. Platelets are almost never at the level of 370 but three or four times worse. If advanced they can be less than 10. Albumin at 5.0 is a great number. Bilirubin you worry about when it is over 1.2 or so and you are at 0.3, again three or four times away from typical worry numbers.

You also mentioned worries about ALT AST. A previous poster with very good numbers (like yours) was worried that the ALT AST enzymes were low and reducing because (as he had read on the internet just like you) his liver wasn't functioning and wasn't able to produce any ALT AST (that is why they would be so low - it is when the liver is pretty much kaput, like 3 percent is still operating - it can't make anything anymore).

His hepatologist he that he does not have cirrhosis or advanced liver disease.

The doctor said with advanced liver disease if enzymes like ALT AST were not being made anymore, other tests such as albumin , bilirubin, clotting, platelets, etc, would be very abnormal whereas they are completely normal for him. Just like they are for you.

I believe you are suffering from health anxiety and not any level of cirrhosis - at least per your numbers posted three months ago.

Please let me be absolutely clear that I am NOT a doctor, just some guy on the internet, only listen to a doctor, not to someone like me. However if I were a betting man I would bet you are fine at this time.

But I do advise you to read these and relax and have a great weekend! Take care!

ps - Please don't take the following links as a message that I am teasing you or anything, I just want you to know you are not alone and probably okay - but again, I am not a doctor, go see the one you have scheduled next month with all of this in mind - you might want to ask him about what is linked - all done so only the best intentions! - Be good!

liverswithlife.com/454-what...

npr.org/templates/story/sto...

uvmhealth.org/healthsource/....

[Dogbot]

Hi muffins7 Ash said everyone is different so true so to that all I can say is what has happened to me. Liver failure on the 28 th September 2003, now the doctors have had to work on me at the start to keep me alive then I spent about 15 years without to much intervention but the last three years I have been in and out of hospital and the fantastic doctors and nurses at King College Hospital have dragged me back from the edge three times at the moment I’m living a reasonable normal life waiting for my transplant. So short answer it is possible to live after liver failure but at times you will need help . I hope this helps and gives you the hope you want, good luck 😊Stay Safe All

Dogbot 🐶🌈Dave

[ballie52]

People that have liver cirrhosis and the underlying reason has been stopped then the liver can slowly heal over time!Liver cirrhosis can and does reverse in a lot of people!

I have had liver cirrhosis for the past 8yrs and the underlying cause treated..my cirrhosis is now reversing as I no longer have portal hypertension or bleeding issues and platelets are going up !

So yes it can reverse if the cause is taken away!

[Smegmer]

You have NOT even been diagnosed with Cirrhosis and the ALT/AST ratio isn't really important if they are in the normal range which yours are. Cirrhosis is the final stage of scarring, the Liver can heal if its not at F3/F4 scarring. Low Platelets are sign of scarring and yours are no where near. You have serious anxiety

You say you were drinking for 7 years, what amounts are we talking about ?