Hi everyone. I have had cirrhosis since March 2014 and have a UKELD of 53 with possible referral for transplant depending on results this week. My problem is simply exhaustion!.
Sitting here crying and getting mad with myself for not having any energy. I am still working full time from home but am physically finding it impossible to keep my eyes open or to move very far. I take many medications such as Propranolol, Lactulose, Quinine, Vitamins, Spirolactone, Adcal, Chlorphenamine etc.
My life has always been so active and I don't want to give in to this, but am finding it more and more difficult to cope. Does anyone else feel the same? How do you all manage? Maybe I am not trying hard enough. Any advice would be appreciated
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SweetJaney
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I've been through this. I dunno really, I don't have any answers because it's hard. Really hard, I'm sorry to say that the only thing that got my quality of life back was transplant, have you had an assessment?
At the time of transplant I was Child Pugh C and MELD 25, I don't know how that compares to UKELD 51?
I think the one thing that kept me going was a very positive partner. She gave me the energy I needed to keep going. Also the fear that I might become too ill for transplant.
On the worst days I'd walk up and down the stairs in hospital on on the good days try to get out and walk a mile or two.
I have been having some tests to check if I am well enough for transplant but only at local Leicester hospital. I am having another CT scan on Wednesday then appointment with my Gastro Doctor at hospital on Thursday to discuss being referred to Birmingham for full assessment. Thank you so much for your reply, I felt so low this afternoon. Knowing I am not alone helps me more than imaginable.
I have primary biliary Cholangitis, an autoimmune condition of the liver and I have very bad fatigue, this has been extremely difficult to live with and I still find it very frustrating.However two things have helped me, being more honest with my family so they understand how I feel, this was hard to do but has definitely made all our lives better and I also have found having a non physical hobby to do helps me pass the time when I have no energy and means I feel I achieve something in my case I do complicated lace knitting I like this because it takes concentration and is not heavy to hold. A friend enjoys the intricate colouring books you can get now.Some days all I achieve is one row of knitting, but it helps me.And when I finish the knitting it gives me great satisfaction.
And when you feel tired rest, I don't really find I can do anything else, sometimes I will get up and go back to bed three or four times in a day. It is hard I feel guilty sometimes that I do so little but no one would choose to be this way, you need to find what enjoyment you can within what's possible.
Thank you jane1964, your reply does help. I am enrolling in an online course to do at home which should give me a distraction and something to focus on. It won't require physical strength either. I need to find new interests that are more manageable. Your reply is a great help. x
Oh bless you 😘😘😘❤️ I can only speak from hubby experience xxxx when he was at the stage you are - he didn't work at all 😢 he had his own window cleaning business and was a 'workaholic' - he was sleeping all day and awake most of the night 😫😫😫 another symptom of liver disease !!! Reversed sleeping pattern - so please don't feel upset at your situation - I think you are 'doing to much' 😘😘😘 are you able to stop working ?? I know that when it came down to it we had to decide what was best - for me to carry on working or for me to stop work and look after him 24/7 !! Benefits are available but it is a drop in income and for some they cannot manage but I know that we applied for ESA and DLA and he got both - DLA at higher rate for both mainly due to 'hepatic encephalopathy' HE xxx you should try and look into it and also contact your local council to see what services they offer 😘😘 as they can offer 'carer' support - my hubby was very poorly for a long time while waiting for transplant and he couldn't do his medication or prepare meals etc - so he needed someone to do it for him - not everyone is the same - we spoke to people that were still working right up until there transplant 😅😅😅 it depends on how this effects you - if you are able to then try working just on the days that you feel 'well enough' - don't push yourself to much as you are unwell and if I remember correctly then ukeld is 59 ??? For transplant assessment xxxxx hope that helps 😘😘😘😘
Sweetjaney, the fatigue is a very common side effect with cirrhosis plus you're also very new to this with such a recent diagnosis though you will have been ill for years probably without knowing it as your liver gradually go more and more poorly. You are in many ways similar to my hubby who one week was away on a camping holiday where we walked 16 miles in a day to the next week lying in a hospital bed learning he had advanced cirrohosis with portal hypertension and varices. He'd been a very, very active long distance walker covering many thousands of miles a year and had been a hardworking welder in heavy engineering.
He'd felt 'groggy' for a few years but had put all his symptoms down to the stress and anxiety of caring for his elderly father with dementia and never thought that he himself could slowly be becoming ever more poorly. He is life long tee total so had never thought in a million years that he would have liver disease.
Anyway we are approaching 4 years post diagnosis and he is chronically fatigue, not just a physical fatigue where he needs regular bed rest and a bit of hoovering leaves him wiped out but also mentally fatigued where he can't concentrate or stick on task, where he has no drive - just no energy to do anything and his interest in things has just wained. He was a driven person to the point of near obsession with some of his hobbies and now he looks at the hills and knows they are practically off limits. He gets very down in mood, often cries because the life he hoped to lead has been taken away from him.
He has seen a psychiatrist at the transplant unit who after seeing him for only half an hour or so has said that hubby has a degree of depression due to adjustment to his condition. His life was turned upside down literally upside down overnight one night.
Just to clarify the UKELD score needed to be listed for transplant it is any score above 49 not 59 and obviously the higher up the scale you are then the more urgent need there is for transplant. With a current UKELD of 53 I think you should be being referred to transplant centre - providing they feel you are fit enough.
For Clarification of this - direct copy & print of referral protocol for Scottish Liver Transplant Unit.
Criteria to be fulfilled to be accepted on a UK Liver Transplant Programme:
Liver failure due to cirrhosis continues to be the commonest indication for transplant. Statistical analysis of the UK experience to date resulted in a mathematical formula using INR, sodium, creatinine and bilirubin to give a score termed UKELD. UKELD score > 49 is required for listing as this indicates > 9% mortality from liver disease within 12 months which equates to the 91% survival at 12 months following liver transplantation in the UK. The criteria for listing can be viewed on the UK Blood and Transplant website, and include variant syndromes where the UKELD score may be < 49 but transplantation is still appropriate, e.g. polycystic liver disease and hepatopulmonary syndrome.
Maybe it's the way its done in your hospital area the pre-assessment tests you are having but at Edinburgh where we go the fitness for transplant and the transplant assessement all take place during the transplant assessement so you may find there will be a duplication in tests or indeed your hospital is already in touch with TP unit and these are tests they have requested before you go up there.
The way my hubby copes is he has to listen to his body, when he needs a nap he naps, we try and go for a minimum 20 minute walk every day and some days when he feels he has more zip we go for longer - maximum we've done is about 6 miles. He no longer works - he couldn't bend, pull welding gear about or concentrate, he also now has mild symptoms of hepatic encephalopathy so gets mixed up, can't learn new things, can't concentrate, has a shake in his hands. He no longer drives either due to the fatigue and concentration issues. We managed to get onto Employment and Support Allowance [ESA] (Support Group) without a fuss at his diagnosis and later applied for PIP - Personal Independence Payment and after a bit of a battle got that too.
Hubby was listed for transplant for 10 months but his blood test results were only ever 'borderline' and when they improved a bit he was delisted because he doesn't currently meet the criteria for transplant. He is still being monitored at the transplant centre with a view to relisting if he deteriorates again.
Best wishes to you, hope all the tests and the assessment go ok and you get what you need to have your life renewed. You are not alone and all of us on here are quite good at listening to rants and giving a bit of support when you need questions answering so stay aboard.
MELD measurement , has been changed this January , it now includes sodium serum measurement and is exactly the same as the UKELD. In the UK you need to be >49 UKELD for transplantation, not barring exceptions for other reasons. In the states it varies from state to state, but no where is it any where as near as high as 49 or more. The inclusion of sodium serum measurement will however increase the MELD for many in the states.
This is exactly how my partner is feeling. He was diagnosed June 2015 & we thought that if he stopped drinking he would just carry on as he was. Unfortunately that's not been the case & the exhaustion is getting him down. The Doctors don't seem to be able to help so he just tries to carry on but it's heartbreaking to see him like this. He appears to have aged dramatically since the diagnosis.
Hi, I too suffer with cirhossis and in my case it is the exhaustion and manic sleep pattern I suffer with. 2 weeks ago I woke at 12.45pm on a Sunday and I was shocked. I had missed half the day. I have been ill since 2010 and still am at a stage where it is difficult to plan anything not knowing how I am going to feel. Whether to walk to the doctors or get transport etc etc. I have had my thyroid tested and was put on lowest dose of Levythyroxine and have just had it tested again - awaiting results. I always look tired. I will feel dozy after my meal for about half and hour then feel like vacuuming the next. I find I overdo it on my good days and cram everything in when I feel well - then I crash. I totally sympathise with you and understand how you feel. Am having a good phase at the moment but who knows how I will feel tomorrow? I too am on lots of meds and doctor picked up some muscle wasteage last week so I am trying a short walk when I can to build legs back up.
Best wishes to you and try to keep positive but I know how you feel.
What a wonderful response, your replies have given me lots to think about. I get confused and lost when I go out, i go to speak and the words I speak are nothing like what I am trying to say. I get so mad with myself for my mixed up mind, Dr says it is due to HE. I suppose we all struggle on some days.
I see my Gastro doctor at hospital tomorrow morning to get latest test results from ECG, CT scan and latest blood tests. He wants to discuss referring me to Birmingham for further assessment for transplant.
Thank you all for being here for me, it helps having others who understand. x
Oops Sorry 😢😢😢 - don't know how I got 59 then ??? Perhaps it was Robs 'score' - my memory is fab at some things and terrible at others - so sorry 😘😘😘 I wouldn't intentionally want to give someone the 'wrong' advice - luckily Ayrshirek was able to correct me ❤️❤️❤️
SweetJaney, hallo, don't worry! This is very important, as I realised, when sad or worried, exhaustion is much worse, much-much worse. Positive thinking is hard, but we consequenshould try all the time. For me some really enjoyed activities can help most. Best readings,
interesting (not long) cooking, best some interesting brain-adventures with some special goals. It was not easy last autumn, I lost all my motivation, could hardly read, and thought it's already brain fog, will never be better, and just by chance and possibly due to consequent continuation of trials I found something very interesting in my readings, and now I work with this. I feel much better, though I worked hard and stopped going out, miss fresh air. I have to tell You, that for 3 months I'm doing exercises in front of tv, sometimes I stop and leave the session, but more and more often do the whole hour. Of course not the aerobic kind, but beside yoga there are a lot's of different kind of movement. Sometimes after 5 min. I want to stop, but they continue there, so it's motivating. I found also dance classes on Youtube, there i make some minutes, then I just listen to the music, and after some rest try again. Any happyly made activities can help, when You are in better state. When feeling bad, we have to be not ashamed to have long rests. I stopped to care, what my family thinks about my laizyness. And learned not to care what if a guest enters our not so neat home. Only closest family and friends come, and I stopped to want to shine with shining house. Be of better thoughts, spring is coming slowly, we will have nice though short walks around My best wishes and very warm hugs!
Thank you for such kind replies. I want to start studying again, but think I should put that on hold for now, remembering the year is difficult enough lol.
I do enjoy walking, I have a small dog and love walks with her. Although I avoid going over the fields now, just in case I take poorly. I have done Yoga in the past, and that is a great idea to try it again, since it is nice and gentle. Smiling today. Take care of yourself and thanks again xx
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My best wishes and very warm hugs!
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