I am new to this so just saying Hi...
I was diagnosed with cirrhosis in September 2021 and spent most of my time staying in hospital. It never even crossed my mind the damage I was doing to myself until it was too late.
Anyway, I am hoping to be able to connect with others that are also battling this terrible condition.
September 2020 rather not 2021 doh!! 🙄
Hello Sunflower, and welcome. You'll hopefully find plenty of useful help here and many of us have damaged our livers due to alcohol-abuse. You are amongst friends here, and no one is judgemental. Many of us have been where you are now, so don't be afraid to speak out.
However, if you prefer, if you would rather speak with someone in private, you can just click on a person's profile, and then in the right hand corner you can select, "message" and send a private message.
Once again, welcome. I'm Richard by the way.
Hi Richard,
Thank you for your response and kind words.
I do need to be able to talk to people that are not going to judge me and that can relate to me.
I don't want to burden my friends and family with what I have done to myself, they are there to listen but they have no understanding of the physical and mental pain I am going through. Although I don't expect them to as I only have myself to blame, so in that sense, I am feeling very alone. My specialist, nurses and doctors have been my absolute angels, they saved my life.
When I was in hospital I went from 9 stone to 7st 2lb within weeks. I was bringing up blood, I was rapidly deteriorating. My stomach looked like I was constantly 9 months pregnant, my legs and arms were like sticks and my face all drawn. I didn't want to look in the mirror, what was looking back at me wasn't me, I can't even describe.. I was diagnosed with decompensated cirrhosis with a MELD score of 51, I had no idea what that was. I had drainage nearly every other week, the pain was unbearable, along with loads of other procedures.
Since being back at home, being a vegetarian I have been on a strict high protein diet, very low salt intake, lots and lots of veg, fish and fruit. No alcohol since last August, and that's the way it will be for the rest of my life. I am now 8st 4lb, looking a bit more human, I have now gone from decompensated to the compensated stage with a MELD of 48 (still do not understand what that is). So, I believe that my journey of this life-changing condition has only just begun.
If I lose a couple of pounds but have a bit of a belly, I think oh god here we go again! I have an ultrasound and blood tests in a couple of months time and am seeing my specialist every 6 months, so just have to go from there..
Anyway, that's my offload for now..
Thank you again, I appreciate any support through this journey and I totally understand what others are going through too 🙂
Welcome aboard!! Lots of help and support on here!! You are not alone!! 😊👍
Hello Sunflower 🙂
It sounds very familiar 🤗
Well done for posting I was scared stiff the 1st time I wrote anything on here with fear of Judgemnt and shame. But it's the best thing I ever did!
Stay positive, take all the help you can get, things can get better,Write any questions down, I knew very little and had a list as long as a fishing line (as long as I could remember it).
I was in the postion same as you, except I was never drained! The 16 month pregnant look stayed with me for what seemed like an eternity, the jaundice and the ascites fluid, the weight loss ..I WAS a cross between Homer Simpson and Skeletor!
A sense of humour is a must! Stay strong 💪and believe it can get better...because by the sounds of it you are!
Well done, keep going!
Take care and keep posting 😊😊😊
Hi,Thank you for your response.
I can totally relate to the Skeletor look 😕 was awful and am petrified that the ascites is going to return.. I eat healthily and stick to the nutritionist advice. I am on no medication just take vitamin D and multivitamins which seem to help, GP advised this is fine, it's always best to check with the GP before taking any supplements as it may not be for others.
But yes, I have a long list for when I next speak to the consultant, last time I spoke to him he was very impressed with how well I have progressed. But you just never know what lurks around the corner!
I like a good sense of humour to keep you going .
Thank you again, hope things are good with you..
😄
👍 It sounds like you are doing really well. 😊
I was on 300mg of Spironolactone for the ascites. They didn't drain me as I was seen by the TP team, as they were thinking I may need a TP. However that was not the case, the medications and a long old slog of slowly slowly thankfully I now have a compensated liver.
Regarding the Meld and Ukeld scores, if you know what your blood are you can work it out but to be honest, I would must wait for Consultant as it can be a bit tricky, wait for Consultant is my advice.
Accept the praise, you are doing really well.
I am as good as can be ...might slap the old goose fat on and have a bash at the channel in a mo! 😃😆
🎶🎷Music, 🤣 laughter and a 💃 mad little dance is the best medicine in the world and should be on script for everyone!
Look after, stay strong and poz!
Hi Sunflower and welcome. Everyone on here has had a reason in their life for them to be here, don’t worry no one should ever judge you. You sound like you are doing fabulous! Any good news from the doctor is a plus, a good reason to feel proud and good about yourself.
I don’t know enough about the meld score but if you search in the top right search button, you will find many posts on it. I think Richard once did one to explain what is looked at and why (I apologise if I have the person wrong) but there is one there.
Hi Jazzjam,
Thank you for your response.
I have my proud moments and then I have my oh what have I done moments.
Totally keep going, I am in no way going to let this beat me.
As for the MELD score, I think I may have got that wrong, I will have to revisit that one too much to take in 🙄
I Hope alls good with you
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