I've been on here for a couple weeks reading peoples comments/stories. but have not posted anything until now.
Hope you all are doing ok.
Im looking for a bit of advice if anyone can help please.
Back in august last year i was diagnosed with Liver cirrhosis from drinking.
for the most part i tried to put it out my mind as best as i can. but its the first thing i think of when i wake up and usually the last thing i think about when i go to bed.
i live with my mother, Dont really have any friends and find it hard to socialise.
fast forward to 2 weeks ago. I noticed my eyes were slightly yellow and was having pretty bad memory loss. I was doing things in the kitchen, i would turn around to grab something and forget what i was doing. I ended up going to A&E to get checked out and got admitted for 4 days. MY LFT's came back pretty high. Bilirubin 61. alp 65 and alt 97. They told me i had hepatic encephalopathy. and was also told my liver is now Decompensated. Thats the one thing i never wanted to hear. Before discharge my Bilirubin has dropped about 25 points and my alt dropped by about 40 points ( over 4 days) and i got discharged with lactulose. Im on thiamine, Carvedilol for portal hypertension and now lactulose. My urine has also turned back to mostly clear. as i noticed it was almost dark golden and had a very strong smell.
It was a big wake up call telling me that if i dont look after myself better my time on this earth will be reduced drastically. ( also im only 33).
i guess one of my questions is, is it possible to get out of the decompensated back to compensated?
Im eating much better than i did before. Im eating every couple of hours, Increased my protein intake. walking around 4 miles a day to lose some weight ( as im overweight) im seriously worried im going to have to get a liver transplant maybe within the next couple years? and if im still over weight on unfit i might not be eligible for one. ( any info on that would be greatly appreciated) drinking plenty of water. No fizzy drinks or anything bad. I dont have any fluid build-up in my tummy or legs. but i do find sometimes during the day that my legs are itchy which is something i was told to look out for. Eating more veg, Eating a tuna sammich as a snack, or a chicken sammich with lots of salad. Eating rice most days and drinking 1 protein drink a day usually first thing in the morning as a breakfast as ive never really been a breakfast person. im also eating 1 protein bar a day as a snack to keep the fire going.
Another thing that terrifies me is that i dont want to die before my mother ( i know it sounds horrible) I just dont want to put her thru the loss of her only son. She is such a kind loving gentle person that i know if i do pass, it will destroy her. I will do anything in my power to try and make sure that never happens. I cant do that to my mom. i just cant. so i need to do whatever i can to try and improve my situation. which is what im trying to do. and hopefully i can get some advice from you lovely people on how to do that and extent my life.
Thats all i can really think of right now but i will edit the post when i think of other things to add.
Thank you for taking the time to read this and if you have any suggestions/comments/advice i would very much appreciate them.
i hope you all have a lovely day and have lots of laughs throughout the day too
My Kindest regards,
Ben
Written by
StokieB
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Hi Dave. Thanks for replying. For the most part i do feel pretty good.
i feel much better than i did when i was drinking. I dont really feel sick or unwell. Its just more of the mental part knowing that ive done damage to my body that gets to me/upsets me. you saying just listen to your body is really smart advice. I think i should focus more on that, than the overthinking and worrying about what might happen.
Also saying it is possible to get out of decompensated has gave me quite a bit of relief. Thank you! I will keep on doing what I'm doing.
Thats really good to hear that you moved back to compensated. That must of been amazing news when you received it. Well done Dave.
I do know from now i will be focusing on eating as healthy as i can. aswell as keeping up with the daily walks. Eventually i hope so be able to add some running to it when ive dropped some of this weight. And ive swore to myself i'll never touch a drop of alcohol again. I know if i drink again i wont be able to stop. i see that as part of my past now and working on a positive healthy future.
Congratulations on your 5k run. Thats a great achievement. i hope your very proud of yourself. I know i would be over the moon to be able to do that.
Oh yes i also have been diagnosed with varices. They are very small but it seems they still carry the risk of bleeding. Hence the carvedilol.
Thank you for the kind words Dave.
The world needs more kind people like you. Your a good egg.
If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
We also 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
Thank you very much for that information. I will jot that number down and give them a call sometime to talk about things that are going on with my health. its nice to know that their are support lines out there.
Also the online support groups with people who also have liver conditions sound like something that i would very much like to join/check out. Thank you for the number and the link.
Your doing everything right to get back to compensated it can be reversed your bloods went down only after 4 nights in hospital thats good l was not that lucky l had to have transplant but my bloods were way higher than yours my bilirubin was 500 at one stage keep up the heathy living thats you have to do good luck Lon
Hi StokieB. If you read my posts then you will see that almost exactly 2 years ago I was in a very bad way and given very little chance of survival. I was in hospital for over 5 weeks with de-compensated liver and while there my bloods were very deranged and I also got pneumonia and sepsis!
Anyway I have not touched alcohol since (it is anctually 2 years today that I stopped!) and now feel far healthier than I did when I was drinking and my liver is now compensated.
Just carry on doing what you are doing and now the better weather is coming, make sure you get plenty of exercise. The main thing is… please to not drink alcohol!
Hi Ben, It sounds like you are doing all the right things, keep going and good luck, it will get better and you can have a happier life without alcohol, you really can. I wanted to post because you sound like a really lovely, thoughtful person. I wish you all the very best x
Hi StokieB all the advice you have is great and you seem to be doing the right things keep it up well done. I didn’t do so well I had to have a transplant just over a year ago, so keep the go work going 👍.
Good advice by all and yes you can turn it around! I did. Always remember, quality of life trumps quantity of life. Many people are alive for many years but have truly never lived. Your attitude toward your situation can help you persevere. Worry and fear effect your physical condition. I rarely think of my condition anymore. Happier than I have ever been. Two years compensated!! Keep the faith brother. I will pray for you. God bless.
good morning, if you read my posts u will find am quite similar , I was told march 2023 that I had decompensated cirrhosis and the chance was slim but if I quit drinking it might go to compensated with in 6 month and if it does not go to compensated in the 6 month it won’t, 9 month later I had my scan and my liver was no better yet no worse, so it’s still decompensated but thankfully no worse, once again told it won’t compensate. I am quite like you with your mother but with me it’s my dog who is also a rescue greyhound so I need not say much more about some of his trauma in his life, I am doing my all to out live him and I can’t do any better than what am doing, but I do believe everybody is different and may be you could be a lucky one who’s liver can reverse, I wish you the best of luck, I to suffer the loneliness since quitting drinking it took me almost a year to want to socialise again as it all seemed boring without drinking, I don’t go out not much now and tend to leave early before everyone gets drunk! I joined aa purely to meet people similar which I did and I love it, it keeps me strong which I need cos I refuse to leave my dog behind, always here for advice 🙏
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