Following my previous message where I'd been to A+E with abdominal pain,and general unwell. I was told by doctor that liver looked very cirrhotic. This was last Thursday. I only get pains now if I move a certain way and felt a bit odd this morning on waking up but my Husband says you gave to pick yourself up. So, since last week I've contacted the Liver Trust a few times who have been great. I'm eating to the letter as too scared to eat anything else. Today I joined a new gym that's a 24 hour gym. Hard to get to the gym with 2 special needs kids of 10 and 13 but I've also spoken to my manager yesterday to ask about reducing hours from 35 a week to 25. This way I can build the gym in everyday and still support the kids when they come home instead of coming in at 6.15pm to find my Son on You Tube, not wanting to cook, so not eating right and nit having any time. My Husband is a bus driver, the shifts are terrible and I work in a really stressful nhs job. Both kids have autism and adhd and one has Oppositional Defiant Disorder too. My Dad has blood cancer and had chemotherapy.all Summer and Mum.had a severe head injury on the hospital corridor when taking him for results. I don't drink excessive but lately life has been too much so had had a bit ore than I should have, although I'm not an alcoholic. I haven't drunk since 31st Dec and am super healthy eating and trying the best I can. Its just so hard to stay positive and not worry about cirrhosis as I keep beaking down crying ad having panic attacks. I've got an mri on 25th and dreading it.
Trying to pick myself up: Following my... - British Liver Trust
Trying to pick myself up
It sounds like you are doing the right things with diet and exercise. Keep up the good work. Hopefully you will get more information and direction at your appointment. One day at a time!
Thanks so much. My Husband said I need to adopt a positive mindset, but it's hard when you just feel so down about everything. As you say, one day at a time. I've been being so careful watching I have been eating too and the gym showed me how unfit I am.
I think you will start to love the gym. It is a good time to clear everything out of your head for a bit. And it not only helps with weight loss but it lifts mood and improves the ratio of muscle to fat!
Thanks Sunnyskies, I did feel in a better mood when I got back from tge gym yesterday. Today I'm going out walking with my kids. Only a few miles but to get out of the house and not sit here worrying about things. Might see if I can go gym later as it's a 24 hour gym so doesn't shut at 5pm like my old one used to.
Hello Skye48.
You mentioned that you have a MRI on the 25th and you are dreading it.
I am sorry to hear you feel that way about it - that is a strong emotion to balance by yourself - dreading something can feel particularly lonely for some people - but you are not on your own - we are all here (and you have been heard).
I didn't want to make assumptions based on what I would think about having a MRI appointment ahead of me; please may I ask:
- is it the prospect of travelling to the venue /
- sensations of being in the Clinic / Hospital setting /
- the experience (or the unknown) around the imaging taking place /
- your concerns about the potential range of test results /
- something else (which my imagination has failed to consider) /
- all of the above
...which you feel fuels the spiral of your anxious anticipation of the 25th to the level of dreading it?
Hi there thanks for your message. I'm scared and worried what they will find and what I will ge told, results. I have 2 kids 10 and 13 who I dearly love and don't want to leave and I'm scared of being told I've got 2 years or less to live. Trying to improve things now so that it will hopefully improve things but there was no guidance from the hospital apart from not eating red meat or chicken. I never eat fried chicken anyway and the liver trust said chicken breast skinless is fine. I don't like tge way A+E told me that and said you can go now. Not told anyone at work apart from general manager as I have put in to reduce hours from ASAP so that I can get to the gym everyday. Getting time for me has always been an issue due to my Husbands shifts, 2 kids who I can't leave because of their age, and they have learning issues and special needs and of course work. I've been silly not making time for me and now it's backfired in my face. I'm going out this morning with the kids walking just to not sit in the house dwelling on things. Think it's affecting my mental health to s certain extent, the worry of it all.
I took you quite literally! I am very dizzy and nauseous and keep falling down, tho nowadays I cannot get up as my left leg (stroke) will not let me. I have stage 4 colorectal, spread to my liver and lungs, yet, after the big op a few yrs ago, nothing, as yet has developed! It is a kind of miracle, yet I feel dire, but,my attitude in life has always been about making lemons! Your hubby is right, tho I m certain there are times when it is very, beyond, busy for you, very! No matter what you are enduring, you are still a mum and wife and, I am sure an example to us all! I have not drunk for over ten yrs, I suddenly decided not to; I am very lucky! Every person has a lapse sometime, It is not a capital offense, and with your workload, who would blame you! Life is hard enough without all you go through! All the very best to you and yours! Jon
Hi Jon thanks so much for your kind reply. I'm Sory to hear you have been having such a bad time of things. I don't want to worry my parents either as they are not in good health my Dad especially with blood cancer, so am going to try and manage things myself. I'm blaming myself as I didn't work harder to look after myself but st the time we needed the money with tge kids and mortgage too. Now I'm just really scared that I've ruined my life and my kids and Husbands too. I've come out today walking as far as tge kids can feeding donkeys along tge way and bringing healthy snacks eg walnuts which I hate and fruit. I think everything got on top of me and I allowed it to. I'm just hoping I can improve things the best I can. I wish you all the best for your health and hope you've got a really good support network too.
Dear Skye, I do well, Thank yo fr your kindness, but, if I may, it seems that you are giving out, all the time! Nor do you give to receive! One never stops being a parent! For the moment, it's about you , going through, a hard time. Please, at least give your parents a chance, because I am sure that they would want to help you! If they are local, then that is good? A call to your mum, asking if she could prep something, or switch on the oven, etc, take a look after the kids, Or the same with your dad, Or, one or both of them alleviating things, by listening or being there, for their daughter, strength will be found and for their grandchildren, too! You parents might even be worrying why you have not said as much. Give them a chance to feel wanted and useful, please? It would be a change for your children, too! Also freeing you of some of the heavy stuff can help with fun times with the kids! Help you remember who you are and not only a sick woman! Stop, stop, stop, with the self recrimination, see what happens when you lose sight of who you are? You have not ruined anyones life. Do not give in because that could! Imagine your kids without a mum! You would fight for that not to happen! Here is some music to lift you, I hope
I pray you a long and more manageable life!
Hi there thanks so much for your lovely message, everyone on here is so kind. Sadly myself and my Mum haven't always seen eye to eye and although they live local it was made quite clear when the kids went to school that she had done her time with going to the school so that was that, no help with anything school related. When my kids went nursery I worked 3 days a week. My parents used to look after 1 day a week but nursery fees killed me. At one point I was spending £710 a month for 2 kids 2 days a week at nursery snd got into debt. I got myself out of this when I took on the extra hours 3 years ago but life has been far from easy. I know my mum would blame me as she said once about George Best and people who do it to themselves don't deserve second chances. I'm not an alcoholic but over the years have enjoyed drinks with friends but I don't have a drink problem. I discussed with my best mate who was so supportive but said, at the moment you need support, not criticism. Over the years ife had so much stress dealing with the kids. They've only ever slept over at my parents house once I think. I don't expect help but considering tge help I've given since 2019 with my Dad's cancer and my Mum had a fall at tge hospital and fractured her skull too so had to look after him, them when she come out looked after her too. I think it all has taken its toll on me, especially with 2 kids with additional needs. If I felt I would get support or understanding I would tell my Mum but at present I don't feel this would support me and would cause me even more stress. Thanks for your kind words and the music which is lovely and relaxing
What a dilemma you face, day after day. I am used to dealing w The Macmillan Team, which has contingencies for such as this! What is available to you, I wonder? Who here knows about these things? Have you your own nurse?, or the team looking after you? Brave face and keeping quiet does not help. I have not been able to help, there must be others! . I am happy you liked the music, the other piece is rousing and difficult! From a period when my hands worked. I pray you even more stamina and all the best in the world!
Thanks so much for your kindness. I now have to find the strength I have found for everyone else.
I pray it will not be slow in coming to you! All kind things, Jon!
Thanks for your kindness. Just got back from the gym and walked about 4 miles with the kids today
That is wonderful! That really is seizing the day! Well done! 
Please don't assume it's all alcohol. I have had PBC autoimmune disease for 18 years, which has now caused Cirrhosis. Just remember the most important thing is no alcohol, to me it would be like swallowing arsenic, it's a poison. Good luck you are doing the right things.
Thanks, no I'm not having alcohol or fat, but I'm just so scared. When I try to talk to my Husband he seems to clam up too. My hours have been confirmed to change from 3rd Feb which will help with exercising, but not waiting till then. I started at the weekend with this and planning to try for 5 x a week at the gym. I just feel so down and depressed about everything. I've never felt like this before, it's awful. Thanks for your kind message and I'm sorry to hear you now have cirrhosis but hope it can be managed gor you.
Oh my love my heart goes out to you. You are under so much pressure and it sounds as if everything falls on you with little or no support. You must be such a strong person to tackle all of this and you are doing so well to start your new regime. I hope your results bring you some positivity because you so deserve it. I understand that you are dreading your results, it is a natural reaction, but whatever the outcome, it means that it can be the beginning to the road to recovery, even with cirrhosis as you are doing all the right things. It is not necessarily a death sentence and there are several success stories on here with people living many healthy years. I wish you all the best and I hope you can get some support to help you through this.
I am so sorry that you are going through this - it sounds like absolute hell - please try to find some time to be kind to yourself - even if it is an extended bathroom break at work to sit quietly.
Many here will empathise with what you are experiencing. And it isn’t just your health. BLT is a great starting point but don’t be afraid to find other sources of support to help you.
It might not look much but you do recognise the challenges and that is part of starting to deal with them (it is a cliche I know but it is also true)
You seem to spend a lot of energy looking after other people but don’t forget yourself in all this
Take care
D
Thanks so much for your reply. Everyone on here is so kind. Sadly I work for the failing nhs and have done so for 28 years! There are only 2 toilets at work between about 50 people so you can't even get a break in there! Im hoping this week brings news of my requested hours change so that I can start properly looking after me. Part of it is that I didn't try harder to put me first but also there's been huge obstacles in my way also and none of this has helped. At the end of the day, I'm only human. If I can make changes, gym as often as I can, eating cleanly, ie none of the kids sweets or anything with fat in and completely cut alcohol forever I'm hoping I may have a fighting chance. It now looks like I've got my own fight to deal with after fighting for both kids, and helping my parents I think I need to focus on me. So hopefully if I reduce my hours I can support the kids of an evening but fet to the gym every morning. I work in a very stressful environment and you barely leave your seat so this hasn't helped either.
Here’s hoping you get those few hours extra - that would help enormously from what you say. And it is another easy thing to say but sounds relevant - go easy on yourself - you are human, not ‘only human’ - seems you are doing the heavy lifting of a team of people just now - maybe that’s unavoidable at the moment
Thoughts are with you this week for some respite
Thanks so much. Just got back from gym. I have already walked about 4 miles today with the kids as didn't want to stay in dwelling on things. Trying to ge more active and eating to the letter.
Keep going!! And you know where to find a supportive group of people!
Thanks so much
You should be so proud of what you have achieved. I had a similar experience with parents, kids and a stressful job. If you can manage to talk to a doctor, ask them to refer you to the mental health nurse and the liver clinic at the hospital. I self referred myself to Pheonix futures in Coatbridge and so Happy with them. At work have they given you an occupational health referral to support your change of hours. If you have cirrhosis and/or mental health issues-stress/anxiety you should be protected by the disability act. Good luck.
Thanks so much. That information is really helpful. I need to contact HR for an occupational health referral as I cant self refer. I give up with management in my place, the nhs, it's a useless and awful place to work. My kids still need me as they are 10 and 13 and I need to help with their special needs.
It might also be an idea to read about Access To Work (in case HR might mention it too) as this includes: physical / disability / mental health challenges support (to support you in being able to stay in the job you have / the format of job you are about to start):
Thanks for the advice that's helpful
Thanks for your lovely message
This sounds a lot to be dealing with on your own! Could you try making an appointment with your GP to discuss your feelings? With all you have on your plate and now your own health worries, they may be able to refer you for talking therapy with or without medication to support you through this difficult time. It is not weak to ask for help! It takes courage and the benefits greatly outweigh any embarrassment! Sometimes ‘pulling yourself together’ requires help when you are being pulled in every direction! Now is the time to focus on valuable you and your needs! Xx
Hi there my GP is as good as useless. When I went there a year ago saying I couldn't lose weight she shrugged her shoulders and said its your age. I then got told I'd be referred to the gym. That never happened. I think there may be a counsellor at work so I may enquire about that. Last week when my Husband was on late shift and I felt so alone I rang Samaritans. I just needed to talk to someone without judgement who would just listen to me. I've not been sleeping either and I really do feel under a high level of stress the entire time which I'm sure doesn't help your liver anyway. Yes I may have had some drinks when out with friends etc but I'm not dependent on drink. I do have a sweet tooth though, but now terrified to eat anything. No support with ehat to eat apart from what the Liver Trust told me. A+E said what it was and then it was, you can go home now!! At times I feel so alone, my Husbands job is awful. Sadly he can't do anything else that brings in enough money for the mortgage. Feel I've got myself into a right mess. I feel embarrassed about it too and the kids are young, they still need me.
It is good you were able to ring Samaritans.
Sometimes people can find themselves in an environment (or situation) which makes it more difficult to feel able to initiate a phone call.
If anyone were to find it difficult to speak to someone by making a phone call; there is also another organisation available (in the UK) by Text (it is a Text Support Service):
Shout 85258
This is a free, confidential, 24 hours a day / 7 days a week text messaging support service for anyone struggling to cope (e.g. anxiety / a wide range of other mental health topics).
To start a conversation,
text the word
‘Shout’ to 85258.
(Messages to Shout won't appear on your phone bill).
Their website also signposts resources useful for supporting a range of topics (e.g. anxious, panicked, stressed or worried):
giveusashout.org/get-help/r...
It goes without saying, but for avoidance of doubt, I will say it anyway; if someone were to feel their life is at imminent risk ...it would be time for (in the UK):
999.
Thanks for your advice. I will bear all of this in mind. I just needed to talk to someone. Spending so much time on my own doesn't help but talking with someone who will just listen often does. Thanks for your kindness
I hear you. Please call the GP today and let them know you are feeling very low and have called the Samaritans. They will take notice! Maybe call the BLT nurses to guide you if you feel it’s an uphill struggle to get them to listen. It’s no wonder you are feeling so much overwhelm with all you have to deal with plus your scan coming up this week. We are here in this group to talk to of course, but we are not professionals and it seems you need expert support. Please let us know you are ok and how you get on. xx
Thanks so much and thanks for your kindness. I have contacted my work for counselling also as I think talking helps me, even if I cry.
Hi there, went for an abdominal ultrasound today though it was going to be an mri but it wasn't. I was fine till sonographer asked why I was there, then I got upset!! The first thing he said is I just see fat in the liver. I explained why I was so upset and he said he understood. He said its OK, he said there's a lot of fat in tge liver snd I've been doing this job 5 years and I see no nodules what you get with cirrhosis, he said he's seen many bad livers but saw nothing like this. He reckoned it's tge start of it geing bad and said if I worked hard I could improve it. He said I will be referred to liver team but told him I'd googled after my ct scan on 9th jsn and being told the liver looked very cirrhotic. They are not supposed to tell you anything, if it was really bad I think and hope he wouldn't have lied and would gave said I can't tell you and the doctor will be in touch. Have changed diet completely and been 5 x to gym this week. When my hours change I will go every morning before work. That poor sonographer, he even gave me a hug
Hi Skye48, I’m glad the sonographer was understanding and you are now being referred to the liver team. They will get to the bottom of it. Keep up the good work at the gym and stick to your healthy food options! This will not only help your liver but your overall sense of wellbeing. Keep going Sky48!!
Hi Skye48 you are not alone, for flexible working in the NHS try the guidance. Also use your union if you have one.workforce.nhs.scot/media/yp...
Thanks so much. I have gone through my work benefits this morning to ask for counselling sessions. It may help to talk to someone. If I don't get a yes from work then I will take it to the union to reduce hours. It's in health and wellbeing grounds so my Husband thinks tgey have to agree.
A scary time, being told you have a possibly life limiting condition.
Are you under a consultant for the liver side of things? If not, you need to be referred to a hepatologist, so that you see a specialist with knowledge and experience of liver disease. They will be able to help with what you should/shouldn't be doing, eating, etc. You can ask to see a dietitian that specialises in liver disease, so that you get the right information that is relevant to your condition. They will also look at what needs putting in place to keep an eye on things.
The main things are avoiding alcohol, eat healthy as much as possible (not always easy juggling work and kids) and try to keep yourself physically fit.
I found out I had cirrhosis and Primary Sclerosing Cholangitis after a massive bleed from varices caused by a build up of blood pressure in the portal (liver/digestive) blood system. I am on medication for the hypertension that has reduced the frequency and severity of the bleeds. I have mild hepatic encephalopathy as my liver isn't filtering out toxins properly, and my body has formed its own shunt between the portal (liver/digestive) system and renal (kidneys) system to reduce the pressure which means not all of the blood goes through the liver either.
I am on annual surveillance - Liver/MRCP MRI every March, Liver/Abdo Ultrasound every September endoscopies (OGD Gastroscopy) every October, bloods every 2 months, occasional CT scans when they want more detail. I also see the consultants at least twice a year, and speak to someone at least every 3 months. I had a transplant assessment in 2023, but was deemed too healthy at the time, with the preferred option being a shunt in the liver. Last year I had a CT scan that ruled out the shunt route, so I will be asking the consultant what the next option is when I see them in April.
I too made the mistake of reading dr google, instead I read research papers on the disease, symptoms, etc. and get a verified source of information. My consultants at Kings are great and answer any questions I ask.
Hi there I'm hoping they refer me to King's as I live within the South East London area. Terrified of scan today and terrified of being given a death sentence. I've joined the gym and Bern going this week. Considering a personal trainer there too, changing my hours at work from 3rd Feb, eating as health as possible and no alcohol. I will never drink ever again. I'm just mentally not in a good place. Have the MRI today and I'm dreading it. Physically I've improved to how I was on 9th Jan attending A+E but it hasn't helped being left hanging with no guidance and not knowing what's happening. I've tried to act normally at work as I don't want anyone to know, I'm to embarrassed and ashamed. I just hope I can see my kids grow up as tgey are only 10.and 13 and need me.
I've been thinking of you. Best of luck today. You did nothing to feel embarrassed about. Great on the healthy diet and exercise. You'll be around for those kids! That was my first worry too even though mine are young men now ... so I do understand. Getting the answers will help.
Thanks for your reply. I want the answers but scared also. Scan is at 4.20. I know tgey won't tell me anything today but I'm just so scared of it all. I'm determined to try and smooth things over at least. I'm trying to follow a diet for cirrhosis as I think this is safest. If I want get to see a dietician I may pay privately for one. I wish I'd taken proper action a long time ago but all tgey ever said was eat healthily and exercise. Nothing more was ever said and it was brushed off. Liver Trustsaid I should have been referred then but tgey didn't. I asked about support for possible irritable bowel and never saw a dietician either. I'm pleased I found this group as everyone has been so kind. I'm dropping 10 hours a week from 3rd Feb so I xan build the gym into everyday. I want to do everything I xan as I don't want to die. I work for nhs and it's really stressful, I can't stand the job!! I've only told my Husband and best friend don't want anyone else to know as don't want to be judged. It's my birthday on weds, normally I love my birthday but can't go for a drink, a meal, or even have a massage feel really miserable.
Maybe a nice baked or broiled fish and veggie dinner and a bottle of San Pellegrino sparkling water. I actually enjoy dining out now but it took me awhile...I get excited about different foods now. Roasted brussel sprouts are a favorite! Ha ha. I am going to be in Southern Europe soon for 5 weeks (I am in the US) so it is good I have learned to eat healthy away from home! Perfect place to get the Mediterranean diet though. I think these healthy changes you are making will really make you feel so much better...not just your liver but everything. I had also neglected my own health while helping others and having a lot of stress. I feel so much better now. Waiting for tests is the worst though. No matter what, in time you will build confidence in your body again.
Thanks so much you are an inspiration. I blame myself that while I was trying to earn enough money for the mortgage in a very stressful job, dealing with 2 kids who I've really had to push for help with at their schools for learning difficulties, getting their diagnoses and even going private for our Son, also helping my Sister when she got sick with bipolar and psychosis, supporting my elderly parents, especially my Dad as he's had 6 months of chemotherapy this year and 44 trips to the hospital since May, my Mum had a Dall and fractured her skull too so supported with that also. I neglected myself, at best walking to work but was tired so didn't walk home. I tried to lose weight so many times, then got the hump as I'm almost 48 and perimenopausal, but I knew I had to support everything else so let exercise slip. I did go to Benidorm in the Summer and have drinks with my friends and have drinks when my Brother come over in October and December and sometimes we would have a bottle of wine between us once a week, but I'm not alcohol dependent. My main problem is my weight and the fact I've always struggled with it. Now I know I have to be first or I won't see my kids grow up, so reducing my hours so I can do gym work everyday. I hate myself right now and feel really down. Don't know how to eat healthily in a restaurant as the food isn't healthy. The mineral water is a great idea. Advised by liver trust not to drink diet coke.
Thanks so much for your support means a lot and just geing able to talk to someone else makes a difference.
Hi there just got back from the hospital. Thought it was an mri but it was an abdominal ultrasound looking really in depth at the liver and other organs within the whole area. I was fine till he asked me why I was there, then I just started crying. He was so kind and I know normally they don't tell you anything. I told him about the pain in that area and the ct scan and what the doctor in A+E had said and he said, there's a lot of fat in the liver but I don't see any nodules or cirrhosis. He said I see just fat. He said he's seen enough livers in his time to know what a cirrhotic one looks like. Yes he said they will refer you but he said that's good and he said I'd say this the start of the problems but if you nake lifestyle changes you have a much better chance of turning things around. He actually hugged me. I just hope he wasn't trying to make me feel better. My Husband said no he wouldn't have done tgat he would have just said I can't tell you anything they will be in touch. I still feel on edge and know I now have to work like stink and hope the fat doest cause further damage. I aim to get to that gym 5 times a week. My hours change on 3rd Feb, can't come soon enough.
That's great news! A fibroscan can tell the percent of fat so you can track your progress. It can also tell whether there is any scarring and how much (given what the technician said, you may not even have any but if you do it may well be completely reversible through your diet and exercise plan.) This is such good news. You must be very relieved!
Thanks so much. I am but worried he bent the truth. My Husband said it would be more than his jobs worth to do that as hes not really supposed to tell you anything. I don't feel completely relieved at present and following a diet as if it were cirrhosis, so boring. Just had grilled chicken breast with chestnut mushrooms, broccoli and green beans, lots of water and coffee with skimmed milk only, no sweetener. I wasn't able to eat since 10.20am this morning. I wonder how long I will have to wait for an appointment. In terms of everything I just continue my diet and gym work and when my hours change from 3rd Feb I will contact the personal trainer. We even walked to tge hospital and back today 1.9 miles each way, no taking car even though we could have done. I feel a tiny thread of hope but know I have to really work my backside off to get my weight down and fat gone. I also just need to get healthier, will never ever drink alcohol again and want to live and be healthy. I still just feel unsettled, but I guess I've got to live with that for now and work on what I can to improve things the best I can.
First of all I’m so sorry you are going through this and secondly a huge well done for going this far without a drink. You’re making all the right kind of decisions to give yourself a great start to help you on the road to better health. I’m sure this is all overwhelming right now for you and quite scary, but if you stick around here you will find some pretty amazing success stories and some amazing people who I’m sure will help and assist you with any advice and questions you may have. Lastly, you appear to be somewhat of a super mum, working, hitting the gym and looking after your kids, wow, you’re doing amazingly well keeping things together like that and I hear you on the kids sitting watching YouTube thing ha ha. I’m also sorry to hear of your mum and dad not being well, you’re having a tough time of it right now aren’t you, but hopefully better days are ahead for you and I wish you well and hope you get some good answers on the 25th, all the best and take care.
Thanks for your message. I've been to the gym 5 times this week. I'm feeling much better than I did physically but mentally I'm really struggling. I don't want to be on my own at the moment and have had a few awful dreams about things. I'm really struggling with everything. I spoke to 2 personal trainers at the gym who told me, you can do it, you have done the main things, trying to get active, changing hours at work from 3rd Feb. What to eat is a big problem at moment though, have cut out all sugar, eating berries and natural fat free yoghurt, porridge oats, salmon, cod, not battered, sweet potato, skinless chicken breast and skinless turkey breast. I've also Bern eating walnuts, chick peas, fresh fruit and veg, but am stuck what else I can eat. I'm terrified about today and what they will find and I'm terrified of being told really bad news. I'm prepared to make whatever changes are needed, no alcohol, healthy food, exercise. I'm trying to be positive but this is the side I'm really struggling with.
HI and I’m so sorry you are feeling this way right now but again it’s understandable and it’s good to share your feelings and talk about things if you can which you’re doing and food wise, that all sounds like the kind of healthy food list I set about getting into me after I left hospital and still like to stick to today. I mean I absolutely love berries of any kind for example and probably eat way too many actually ha ha. I also love bell peppers as another example and will eat say a red one for a snack like I would an apple.
And yes it’s a struggle at times to constantly have to think of what to eat or rather what not to eat or what you shouldn’t eat. But it’s critical the diet and nutrition aspect of it all and you are demonstrating that you are on the right path and all the foods you’ve listed will be super beneficial for you. You’re ticking the right boxes here.
And try not to be too terrified also, for which I feel for you because I’ve been there and it’s awful, I know it’s easier said than done to be told not to be scared, but you wont always feel like this and once you have a grip of things which maybe triggering you right now, which you seem to be more than doing with your diet, exercise, job and being such a good mum, in time it becomes less terrifying.
It does get easier and again you’re on the right path and I sincerely hope any suffering you’ve been through will lighten up for you and you get a bit of a break from it all soon enough and can start to look forward and be hopeful for the future which I’m sure will happen for you. In the meantime if you have any questions or need to vent or need a virtual hug, you’ll find a caring and friendly community here so good luck, all the best and take care.
Thanks for your lovely message. Went hospital this pm had an abdominal ultrasound. Thought I was having mri but it was this. I was OK till he asked why I was there then embarrassingly I cried, poor man dealing with that. When I explained what had happened in A+E and how I'd been so stressed he started looking and said I see just a very fatty liver but no nodules. He said you always get a different texture and it just looks fatty. He said after 5 years he's seen so many livers and can see a badly cirrhosis liver from a long way off. I asked him again before I went and he was adamant. He even hugged me which I thought was sweet. He said to be left from A+E like that is bad no wonder you have felt this way. He said you will be referred as amount of fat in liver but said if I worked hard he hoped coukd improve things. I'm going gym tomorrow after going 5 x this week and when my hours change on 3rd Feb will go everyday before work. I have to fight this. I hope he didn't bend the truth, but my Husband said don't be stupid he would gave told you he can't tell you. I have a tiny strand of hope, just a tiny strand and I have to work hard now. Wonder how long liver team will take, but no matter what I have to improve things. Even considering a private dietician and will fet a personal trainer too. I'm pleased to hear and hope I won't always feel this way, the whole thing really is pretty terrifying. I hope you are ok yourself and thanks again.
Hi there, and don't be embarrassed for crying, I’m meant to be some tough bloke who is used to feeling like I have to man up and take the stiff upper lip all the time (us men really do need to show our emotions more and talk more, it’s OK to talk and OK to share), and yet I’ve probably cried more in the last 2 years than I ever have, it’s natural, you are scared or have had a scare and how lovely if that person hugging you, that was really nice, sadly we don’t do much of that these days either and especially in the so-called world of professionals as most are fearful of the cancel culture or someone making a complaint.
When I was in hospital the NHS staff were the best and I’m sure they’ve seen it all before, someone coming in Ill because of alcohol, but I believed their sincerity so much that they displayed for me in terms of their kindness and empathy. As for him saying what he did when conducting your US, I’ve had a few and most wouldn’t tell me what they saw in mine and only one said he saw no scarring, the expert who gets to look at and analyse them will hopefully confirm what he told you and and while I’m in no doubt some do bend the truth just to make people feel better and maybe there is nothing wrong it that, if anyone can tell it’s likely to be that person so fingers crossed for you.
And I’m great thank you, it’s been a tough and long journey from where I was at, but it can be done and it’s really down to you now and I can sense you have the determination, will and wherewithal to turn this around so good luck and take care.
Sometimes, (holding my hand up to this one), particularly when there is so much information to take on board in a short space of time and big changes to routines, diet and exercise - in order to quell the mind racing too far ahead of itself with the "what if" strands - find it helpful to try and build in what I would describe as a "worthwhile distraction" (a new selfcare idea, preferably shared with others in your life, nothing to do with liver disease, at the pace of excitement to tune down the busy brain - maybe something to become a new valued tradition or pastime).
For example, thinking of your Birthday "can't" list - what about inventing a new "could enjoy" list as a bit of a laugh with your Family at home - setting up revisiting a few cartoons / movie choices which you would all enjoy? Each Family Member could take on responsibility for making a bit of the event happen / seem extra special, it isn't intended to bring "Mum does it all" into action. Maybe Husband has the furniture arrangements, setting up a coffee table ready for setting out the healthy snacks and nice glasses for some sparkling water (maybe some slices of different fruits / some berries for people to personalise and make more fancy / novel their own water choice). Maybe the Children could come up with some viewing suggestions and draw or sticker decorate a programme listing card (or something similar playing to their special interests and strengths - it is just about building a new Family traditional option of what "celebration" can mean and creating good memories as best suits you all). As a Family you could decide if you would prefer the style of "Sunday Best" outfits - because it is a Birthday, or perhaps PJs and Onesies "Sleepover" style. Get together some of your blankets / duvets / throws / favourite hats & scarves / cushions & pillows / un-zipped sleeping bags and then everyone settle down, as suits them, to enjoy the time together.
It might be a good idea to even build-in and say to everyone there will be an "intermission" - so nobody need miss out on the fun if they need to use the bathroom, would benefit from their Neurodivergent Breaktime (of unique style - how whoever might benefit from doing their own thing for a few minutes), re-supply snacks and water etc., play some tracks of favourite music for intermission too.
I have worked strange hours / been on callout rotas at different times in my life. Sometimes the Birthday "day" isn't the "right" day to hold the celebration - and that is OK (juggling shit pattern change overs etc.). Maybe open cards on the day and explain to the children (in advance) that we have chosen "x" day as the special celebration day - to be the best relaxing experience (or perhaps the particular Family activity you chose would benefit from the better weather forecast of a different day that week).
An example from my World - where I have been trying to find ways to continue connection with an elderly relative whose mobility is limited and who would royally stress me out if I were to share my diagnosis (trust me, they have regrettably poor form re: one of my other underlying conditions). I want to do something outdoors rather than at their house, I cannot cope with their idea of treat / being hospitable food & beverages, we are very different characters and it is best if our time together is structured and not too lengthy!
I recalled that: as a younger adult they used to be quite artistic, used to like picnics, have always been keen on birds and the natural World. They are independent and still like to drive their car. For recent Birthday / Christmas I have given them a few travel art supplies and a little stainless steel flask and some fun picnic cutlery.
A few times, on decent weather days, we have met up st an arboretum / nature reserve / reservoir / stately home / riverside (with facilities) and had a short walk or used a wheelchair to reach a further point of interest or sit in a bird hide. We both like photography and sketching or watercolor painting for a while.
Then it is back to my car to share the picnic together in the back seat this time of year (the healthy picnic which I bring (and each brings the beverage of their choice). My car is the larger of the two and I got some inexpensive front seat seatback organisers (like people use for children on long car trips) - for ease of stashing useful things while we picnic - tissues, hand gel, wet wipes and a bag for refuse etc. and another seat organiser which is a boxey fabric bag style - which goes on the middle seat between us - with 2 cup holders and a table type lid upon which to set down clip lock boxes or your plate while having a drink.
A few hours together filled with: wandering / looking at a change of scenery / taking photos / some art time / sharing a simple picnic / a bit of chatter ...but the level of novel occupation means it is less likely to stray into the persistent 3rd degree of "what have you been doing" (err, medical appointments etc. ...I don't think so, thanks all the same!).
We see each other for our worthwhile distraction, on neutral territory - probably encouraged to do something / go somewhere we might not have been motivated to do solo. It is an arrangement, time bound, I can not have to worry about unsuitable food, I can constrain my relatives high budget restaurant suggestions (I produce 8 really nice pairs of picnics to 1 of their fancy restaurant outing ideas). It keeps the conversation focused on the outing instead of trying to "drive my bus" ...and I plan in a quieter next day ...to recover from all the socialising!
In any event, I hope you have a god week.
Feeling frustrated
End stage liver disease
Liver function test
Trying to process
