I have decompensated liver not alcohol related ten years on methatrixate and fatty liver diagnosed at Easter and hospitalised six weeks ago with ascetics now on reduced fluid spirolactOne 50mgs lactulose 10 mils four times a day carvedilol 6.25mgs a day l have varices macrogol 2sachets a day and frusamideI feel overwhelmed by the medication trying to remember to order and take.it feel like a full time job along side working out my food l don't feel confident to go anywhere or eat anything out l don't understand the score things and blood tests l have been told l may have a year eighteen months and l feel sad and afraid.
My family and friends think I am doing magnificent job of coping but the truth is l am crying a lot l find it hard too sleep .l wonder if anyone can clarify for me should l be drinking coffee and why?should l be having small meals?and what should l be eating any suggestions would help .l read the posts and you seem like a good crowd and knowledgeable
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Missmanor2
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Don't worry bout crying,we have all been there at 1 time or another,and its still very early days for you....better out than in love.
I can't stand coffee...I will stick to mineral water!! And sometimes some nice fruit cordial.
My liver cirrhosis was caused by my own doing unfortunately, no one else to blame.
Ive suffered alot of your symptoms, varices,of which I still have, bad ascites , jaundice etc.
Have you been put in touch with a liver dietician??
Little and often regarding meals, high protein content. So chicken, turkey, quite alot of fish .alot will probably say to cook from scratch, but life doesn't always allow for that,especially if your on your own,and do your own cooking like myself,and your having some off days.was told to eat something late on in the evening to fuel my body through the night, as to not use my muscle mass,as I had lost all my weight and muscle,No salt,as to help with the ascites.
But,must remember we are each individual, and you really are best discussing your individual needs with your own medical team.
Regarding your bloods and various scores,that is your consultants, gp, liver nurses job to be interpreting them for you ,i always ask for them in layman's terms for myself. Liver nurses are great, so helpful. I usually ask after scans, bloods etc,is there anything I need to be concerned about.
Love, no one not even our consultants can say how long any of us have left with any certainty, my gastro consultant did not expect myself to improve as I have, Still here,4 years on🙄
Don't get me wrong,life has never been the same since cirrhosis diagnosis, but we must keep moving forward, even though some days ,even some weeks are not good.
Have you got a good daily medication organiser ?. Makes tablets so much easier, otherwise I would never remember 😀.
Thank you so much.seeing liver nurse tomorrow and will ask her to explain.its hard isn't it? Feel overwhelmed with it all l have always been a strong woman the one everyone else comes to and a wicked sense of humour both things absent at the moment.thank you for taking the time to reply it helps
Thats good your seeing your liver nurse.Get all the questions you want to ask down on a pad,as if anything like myself,I used to come out from appointments,and think,well,i didn't ask that etc😃.
Don't loose your wicked soh love,you will need that in times to come,that will help alot.
Thank you so much l am doing a list for the nurse.l am going to speak with the chemist about sorting my meds sometimes fresh eyes are what l need can't see the wood for the trees ect Have a good day
Like me I was terrified now 4 years on I am doing fine. All I can say about Carvidol is that it widens your blood vessels to help the blood get through. I have Carvedilol because I have what has been explained as reverse flow. So some of my blood is getting through (thankfully enough) but not all of it.As far as going out, diets etc I have found and really believe you are in control. I eat what I like and if it starts bloating my tummy, I make a note and don't have it. I eat a lot of fruit and veg anyway so no change there. As far as I was concerned I too was told a year to eighteen months and I am still here and happy. You really have to stay strong and positive, there's no point in letting it get on top of you. I had a week just after Christmas this year when I cried and cried as I didn't really know what was going on. I had a chance to see my Dr who explained all the different things involved. Each case is it's own so really they can't give a prognosis. I asked when I last went to hospital for a check up. My specialist said we won't give a prognosis but he did say, people can live a long time with this condition. So chin up, wipe away those tears and put your positive pants on. Don't look back. Easy to say I know but it's working for me. Xxx
Wow that's good to hear thank you!you really are a great help l don't feel so aloneKnowing you guys understand and help seeing nurse at 5so armed with questions as suggested l am feeling more positive will let you guys know how l got on thanks
hi, try to eat little and often concentrate on protein, rest as much as possible, the cardivol is help keep your portal vain open and reduce the risk of asiteas rebuilding. When you feel overwhelmed give yourself a treat ( like chocolate) yes can still enjoy your coffee. To begin with try to cook everything yourself with no salt and gradually you will feel more confident about eating out. Good luck, let me know if I help with anything else
I hope you had some help and guidance from the nurse you saw, if your medication is becoming over whelming do you have a family member that you would consider asking to help you, would anyone be considered to be a carer for you going forward, I say this because my mum was diagnosed at 73 with similarities to your diagnosis and I stepped in to help.
I would also recommend talking with the pathway team for pallative care, you should be able to ask your gastroenterology consultant for this service,they would especially help on counselling with how to deal with everything. Pallative care is not just for end of life they can help along the way with life limited illnesses. Iam glad you have messaged here, there is alot of love here for you and if you don't feel able to discuss with family yet then this forum will help along with the British Liver Trust nurse help line. Xx
Thank you for your suggestions l did ask the l.s nurse about palliative care she said l wasn't ready for that yet.My daughter is brilliant at taking me for appointment ect but she has a full-time job and l want to remain as independent as l can so don't always tell her how l feel which is why turned to you guys and so glad l did it's good to get different suggestions and advice the support is helping me a lot x
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