Just thought I would say hello to everyone. I think the group is grate.
I have a new diagnosis of alcoholic cirrhosis, however I did have liver issue before the alcohol.
Been sober for 3 years now and had cirrhosis for a year.
I have learnt more on this site than my dr said in the last year. My consultant has, not given me any support. its really BAD.
I have just been referred to a dietitian today after begging for the last six months, however I,m now stuck on a 3 month waiting list to see the dietitian.
I have been trying to keep my weight steady as I don't seem to hang on to fats and proteins etc, and I lost a lot of weight over the last year.
Has anyone got any tips while I waste away waiting for a dietitian.
Thanks
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chadwell
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Its normal to be malnutritioned but i found i put on 10 stone 23 stone in total and im 6 ft 4in and i was a bit taken aback when they said i should eat more due to malnutrition...i thought they where taking the piss so i told the specialist to bite my fat arse. It was funny at the time, i promise, lol. i used to have to wee in kitchen sink for months prior and had to settle for a sofa for a bed whilst waiting for my first hospital stay. I got more sympathy as a fat bastard than i ever get as a cirrhosis sufferer strangely enough.
Also, after initial weight gain, when getting sober and eating healthy, sometimes alcoholics lose weight because alcohol breaks down to a simple sugar, thus causing bloating and a lot of weight gain. So, when your burning regular calories, your body changes. It can take a couple of years for alcohol to really come out of your system.
I also got sick after 3.5 years sober, but had been diagnosed with early cirrhosis and Hep C years before.
My dietician at Addenbrookes says I should try and eat something every 90 minutes or so to 3 hours..even if it's something small. She's prescribed numerous supplements, none of which appealed to me, but I had no appetite for nearly 6 months, and only ate soups, etc and other liquid type foods. Recently, because I'm afraid they will put me on IV fluids, I am forcing myself to eat. Yogurt is good and she says anything with pasta, rice, and other carbs for energy. She said that because I have zero body fat now, my liver (which is in charge of energy disbursement) is attacking or going after muscle for energy. So, I am forcing food. Protein, like someone else mentions is good also, but I have heard it's harder for our livers to break down red meat. A perfect protein is egg. So 2 or 3 eggs might be good, with toast?
Hope all this info helps. But if your really worried, go see a new doctor..really. We also have to be in charge of our health. I'm surprised, if you have drastic weight loss that they have not noticed this? Where are you located?
I sure hope you feel better, and also, they will tell you to stay away from any extra salt and sodium. This is bad for the liver and it's a big no no for Cirrhosis. Fresh fruits and vegs are good too..but things like pickles, olives just be careful or have minimal.
Well, I cannot imagine what he would have meant..but, I know for me, after I got sober..I found out just how bad the alcohol had effected not only all my organs, but my brain, and emotional well being. For instance, after 10 days sober, I laid in bed and cried for like 8 hours straight..because although my father and my previous partner had passed a few years prior (within an 8 moths period..that was a very bad year) I actually had numbed my grief. With the booze. So, I had some very serious grieving that came up right away..it was like my body no longer had its protective armor of booze..so, it flooded out. I knew about meditation, so, First, because I was still very weak, and could not do anything physical yet, I started meditating. I started with 5 minutes a day and worked up to 30 minutes every morning. For me, this consisted of listening to a playlist I created, of soothing music and sounds. I would focus on good and healthy things, like how happy I was now that the booze was gone..or some days, I'd focus on nothing and try to quiet the storm in my head. It really worked! I'm not much of a prayer type person, but every morning I asked the universe to help me stay sober and be a better person. At night I would say thank-you. Because, as a drunk, I often blamed everyone else for my bad choices, and had no gratitude, and would obsess on how bad I felt, etc, a friend said do a gratitude list. So, on days where I'm feeling sorry for myself, or focusing on my illness to much, I make a gratitude list of ten things. It really helps and puts my focus elsewhere. I also keep a looking for god or looking for good things journal. I still do this, nearly 7 years later. I 'Look' for amazing things everyday. Some days they are big things..like getting on the transplant list..and other days it's because I saw a butterfly in our back garden..but I write those things down and keep track of them. I also sketch in that same book..put my hopes and dreams in. A good healthy attitude can never be underestimated..really..The body follows the mind.
The brain thing was important too. So, my doctors then recommended reading daily, anything really..I love science, and some fiction also. So, reading, and I would do brain type puzzles. If you like maths..Sudoku, or hidden words, crosswords. It helped me start to focus again and to concentrate.
I started eating very healthy. Cut back on caffeine and sugars. I still drank coffee, but cut it way down. ALSO, and the health benefits of this can never be underestimated..water..I drank glasses of it every day. It flushed out toxins and continues to do so. When I did finally get sick, I followed the doctors restrictions. In the US you get a list of what is healthy for your liver and liver disease..I can probably email you photo copies of that, if you want?
Next, walking. I love walking. So I did more of that, when I could, and then added swimming. Fresh air and exercise are just incredible!
I did other things also, that probably only apply to me..like practicing silence daily..because I was so angry and depressed..no one wanted to be near me..So, I practiced silence..learned to keep my big mouth shut, and saved the bad stuff for therapy.
I also went and still go to a 12 step program..that, more than anything changed my life. I did exactly what they told me to do. period.
I owned my own company, and sold it..so, I needed something to do. I chose to go back to school and get my PhD in anthropology. That has been my greatest loss, getting sick. I can no longer handle that schedule..but going back to school at a later age is so great, I cant tell you all that goodness that came from that.. I hope to return to it!
BUT, after giving that up, I decided to start sketching again..I had stopped doing that as a late teenager..it was my dream as a child, to be an artist. Now..I have been sketching and doing paper art for a little over a year..lololol..and this is insane..somehow, it has become a business..after all these years..I design Miniature Paper houses..other crafters buy my designs and make them..At Christmas we did so well, I had to start a company. We're selling in the US and all over the UK and Europe. Sorry for the long reply..but, I wanted to answer your question thoroughly..I tackled all aspects of my life..and I added things, not all at once, but as I could. Its been amazing..this journey into a new life and I'm so grateful I am here now..and living it. I hope some of this helps XX
I get what saying about the emotions. I lost my wife and kids, then got made homeless. Then ended up in a rehab as I was in a bad way mentally and physically and I think it took about a year once I came out of rehab before I was able to do things.
I started collage as I'm training for the drug, alcohol service to be come a counsellor. And I meant to be working in prison soon. However I'm I think my health will let me down now. But I'll see what the Dr say on Monday.
I do mindful sometimes however I should do more.
But again you have lots of helpful tips. Thank you.
I do have one more question I had a ultrasound about a 2.5 years ago and it came back with a fatty liver. A year ago they said I had hepatitis and cirrhosis this was VBL. Then I had an ultrasound again and they said I had pre cirrhosis and needed a biopsy . 1 months ago they gave me a liver biopsy which conformed cirrhosis . i wrote a letter to my consultant saying some of the symptoms I have been having with regards to my legs filling with fluid, and some memory loss (however this could be because of Epilepsy) and the weight drop which they are aware of. Plus I seem to get catch colds and infections a lot theses days.
Now I received an urgent appointment for Monday?
Can you think of any questions I should ask the consultant on Monday? - Thanks
Thanks, that's brilliant reply. I live in Essex and I already change Dr once as the other one was worse.
That makes sense about the weight lose. However I don't have the blotting. But my legs are starting to get a bit of fluid in. Especially in the evening. Which is making my weight jump about 4kg from morning to evening. In the past year my Bmi gone from 28 to 16.
I do have a good appetite at the moment however despite eating the weight drops I've been looking on the net a lot last night and I'm going to try the things you said. I did read about the red meat.
So far i have only blotted out when I have had jaundice in the past.
Sodium going to an issue as I take sodium 2000mg of sodium Valpourate for Epilepsy per day.
WOW - my liver consultant has just phoned and he needs to see me on Monday?? Grate a whole weekend of worrying
thinking a good thought for you..try not to overthink it though..it will make you miserable all weekend sweetie! just remember..whatever it is..it already is, and there's nothing you can do to change it. If your in Essex..so am I..I went to Broomfield first..the head of Heptology sent me straight away to Addenbrookes in Cambridge..they specialize in the liver there, and have great success rates for transplant..doing about 80 a year. We live in great Totham, near Maldon..and Longfield is our GP. I got my referral from my GP there to go to Broomfiled..but he had been a fellow at and had studied at Cambridge, which is why after he saw all my paperwork and all the medical files, immediately sent me there..saying that's where I would end up anyway. I don't know if that helps? But if you read some of the other replies to my original post..you'll see quite a few of us are patients at Cambridge and are extremely happy with the care we get there..they are just the best in the nation..really. Have you seen anyone from there? or maybe ask your GP for a referral there?
The leg fluid is something I get really bad too..although, not lately, because I am having drains every two weeks, and so they are getting 18 to 21 liters of fluid every time. Not sure about the memory loss..or to be honest, most of these things..I'm just guessing, from what I know about my illness..I'm not a doctor..lol..
My girlfriend, before she died from this illness a couple of years ago also had the encephalitis..from too much ammonia getting to the brain..that's from the liver not being able to process the ammonia..but that was late stage. I have the memory loss sometimes, and some fogginess..but again..that's another reason why I do all that reading and mental quizzes..it helps.
They say after being diagnosed, it will take up to 20 years to really get sick..but that may have changed..It was 5 percent..It's however your body does what it does. So, until they see definite signs..there is really not much they can do..if that makes sense? I also have the trifecta..Fatty Liver, Hepatic and Alcoholic Cirrhosis. They told me, given my health at time of diagnosis and the three types, they could expect to see me showing some serious changes in 2 to 4 years.
Then they put me on the fluid pills, and eventually I let them give me pain medication, and I followed the strict diet. It was just about 2.5 years after I was diagnosed with end stage (not the original diagnosis, 20 years prior of Cirrhosis and Hep C) that my health really started failing. that was last November..since then, it has been a tumble down. Thankfully I am getting the greatest care!! I'm so blessed
I would ask the doctor..if you are really worried for a referral to Cambridge. If he says no, ask for Broomfield. The head of Heptology is good there and worked at Cambridge..He''s a little abrupt for my taste..but, he'll know what he's talking about.
Ask your GP about your diet and the fluid. OHHH!! Here's another thing..take a notepad and a pen. Take notes. A lot of notes. you wont remember all they say, and then you can ask questions from the notes next time.
Plus, to be honest, if they have called you in for Monday..they obviously have stuff to talk about anyway..so having the pen and paper will help. I'll be thinking of you this weekend and hoping that all is well. sorry I dont have all the answers..to be honest..I'm afraid I've been giving you advice that really, only a doctor can. I do not know your situation and am not a doctor or nurse.. you know? I'm worried you might take my situation and try and fit it to yours..each one is different..everyone is different.
But I sure hope it's all good news..in the end, we are all getting older anyway..so, stuff is bound to break down..
Thanks for the kind words, I will take a pen and paper, and take notes.
My Dr not a liver specialist, he's a Gastro?????? And I go to Harlow which again is not a liver specialist place, However I have heard from other Dr's that my consultant very good.
I was thinking of asking if I could go into a London hospital because its easy for me to get to. And all my family live in London.
But If Cambridge is better I will talk to the Dr on Monday about it. + I will keep Broomfeild in mind.
Its true what your saying about, what will be, will be. And this weekend I decided to give the weekend a K.I.S.S - which means keep it simple silly.
Thank God for internet and peoples advise and tips because this morning I got up and my legs and belly have Hugely gone down in size?? and I had no idea how blotted my belly was. and I have had to burn another whole in my belt . And this is just from a diet change In the last few days, and I though i had a good diet. But yes you are right because Dr's should be telling me this.
Instead of a one line letter in a whole year saying "Unfortunately you have cirrhosis , strictly, do not put on any weight, do not drink, and do not take any paracetamol". And that the only letter I’ve had in a year.
Anyway I hope you have a lovely weekend and I really pleased that your on the transplant list, and your have to keep me up to date. And i let you what happens on Monday
hi there..oops. sorry, heptology..that's me referring to something else..lol..Gastro is what you need. I don't know if London specializes in the Liver? but I do know that Addenbrookes at Cambridge does..and they REALLY are excellent. That's great if the diet is working
KISS is a great thing..I use it often..lol..but I say keep it simple stupid..lol..one of my problems is I think I'm too smart for my own good..it gets me into trouble! ha ha ha.
thinking a good thought for you, and hope to hear from you on Monday..you can always message me also, in this forum..that way if its anything private..no worries!
Gastro not what I need but it's all they hospital have. And in the U.k if you can't be offered a liver unit you end up with gastro.?? speak to you soon...lol. PS i can be stupid and silly at the same time.
sorry, I meant, in the states, when I was seeing the liver specialists there..they were all part of a Gastro team. Some were consultants, some surgeons..but they were all part of that family..I believe it's the same here? Liver falls under Gastro, all the digestion stuff..which the liver is a big part of. ( fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery.) So, I know there are the specialists also..that's who I see at Cambridge.
I also have endoscopic and belly varacies..that's where my liver is not doing its job, so my blood vessels are getting overfilled..this can cause tears in the esophagus and tummy and lead to internal bleeding. I take propanal for that..which lowers your blood pressure, so your heart does not pump as hard, to help keep the tiny creatures carrying blood to and fro in my body from exploding! lololol.
That's another thing they watch very closely when you have Cirrhosis and you start getting sick. They give you an endoscopy every 6 months, put you kinda out of it, stick a tube down your throat and look for tears, or stretching. I actually had to use a 24 hour pull cam once..lol..I swallowed a huge pill that had a teeny tiny camera in it and it took pictures of everything that happens when you swallow something..went through all my intestines, stomach..I don't know..lol..it was crazy cool..like £1200.00 for one pill !
Gastroentology is the right dept as far as i know in the uk. It covers a lot of illness but thats where they used to put cirrhosis sufferers in leeds LGI at least.
right! it's Gastro..I kept using Heptology..my mistake! ugh! lol..
When I was first put in hospital all the doctors that came to see me were from Gastro and they knew about my Hep C and Cirrhosis. They went on to become my normal specialists' team, in the US. They handles all procedures, my ascites, all of it.
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