I’m currently waiting for a liver transplant and have been on the list for 3 months. I still really want to work but I just struggle to do so. I’m a nurse and have patients to look after, so if I’m always so exhausted, I can’t manage to do my job as well as I want.
My mum wants me to keep working as she thinks it helps me to take my mind off things. Thing is, all it seems to do is make me think how much I want to sit down and take a break. It’s mostly my body that feels drained, but i still get sleepy too.
I’m eating well and having enough protein. My partner works long hours so can’t look after me, but I don’t think he realises how exhausted I am. I do my best to keep up with the housework, food shopping etc. I’m trying to keep going but I’m really struggling. I just about manage to look after my puppy. I feel like I just need a break as I feel I have too much responsibility over my head.
Anyone have any recommendations as to how I get my family and partner to understand how and why I’m feeling this way?
Sometimes i feel I’m moaning or just being lazy for needing a break from everything but as much as I try, I can’t keep going like this.
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Oliviaamyprice
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My goodness, just read your post out to my hubby and he says 'How on earth is she doing anything at all?' He suffers from chronic fatigue due to his cirrhosis and sometimes can't even manage a trip round Asda with me without needing to either go back to the car and sleep or falls asleep on the way home. He can't do a bit of hoovering without a break and he isn't lazy it's the condition. Your liver robs your body of energy is what his consultant always says.
You are seriously poorly if you have been listed for transplant and my goodness you'd think your family would realise that. It's not like having a sniffle or a broken leg, this is serious ill health. I guess when it's not obvious like a broken leg or being bright yellow they might not realise just how poorly you are but you'd think your nearest and dearest would understand.
Do they attend clinic appointments with you? I basically had to give up my self-employment when hubby was on the list as he was so ill he couldn't really fend for himself and certainly couldn't have gotten the call whilst alone and coped with it. Perhaps mum or your partner needs to attend the transplant clinic with you to realise how serious this is.
Being in the health profession is there any chance of negotiating a reduction in hours? Perhaps no need to stop completely but some flexibility around your illness. My hubby can't work at all - he can't concentrate, fatigues easily, doesn't sleep at night and day time rest is non-refreshing. He describes it as both a mental and physical fatigue and it has lead him to make errors with meds, forget things etc. He also has minor HE symptoms. Hubby was a welder in engineering so couldn't do the lifting, bending and crawling about anymore or indeed be safe enough to work on the shop floor.
Really feel for you and hope you get some respite soon and that your family show a bit more understanding.
Thank you so much for the reply! I’m so grateful that someone understands.
My dad and mum have both been to my appointments but partner can’t take time off to come at all. They haven’t been to any recent appointments, so maybe that will help to understand.
I’ve just taken my puppy for a walk but had to stop a couple of times after feeling exhausted or shakey from low sugar levels. I was too tired to go food shopping today so worried about not having anything decent in for my partner to eat.
I work 16hrs per week but on my feet all day. I’m tired as soon as I get there as I have to get jobs done in the morning. Im not sleeping well either but I’ve never felt this rubbish before.
I feel a bit trapped and afraid to ask for help. I’m so unsure what to do with work as even after cutting down my hours, I’m still not coping physically and emotionally. I hide it well but I think I just want to stop and sleep all day and night.
Has your hubby experienced a loss of appetite or wake up in the morning drenched in sweat? I don’t know if I’ve experienced any HE but find my mood is up and down, forgetful, mumbling, lack concentration and slow with most things I’m doing.
You need to make your hubby go (even if he has to take a day off) you should talk to OH about reducing your hours or better stil stopping work for a while!
You can also try having high carb snacks (especially before you take the dog out or have to go shopping- take snacks with you so if you feel your energy dropping eat some sugar eg sweets to have while you’re doing tiring activities)
You must rest when you’re body tells you, or you risk making your condition worse.
Hi Olivia, I dont know how you do it. My partner is the one with liver problems. In July last year he was fairly good when we went on holiday. Then he was hospitalized for 7 weeks with kidney probs caused by his liver. I gave up work in October. He has HE and gets confused, is very weak, I have to help him a lot. We also have a dog, who keeps me going. My partner cant walk the dog anymore. Dont worry too much about walking your pup, if u can play games with him indoors to train and tire him out. My partner has an appt at the Royal Free tomorrow. Good luck and take care x
You definitely need to speak to your Gp and get an appointment with OH. You shouldn’t be working when you are so exhausted. Don’t be so hard on yourself and admit to others that you need help and support.
Hello Olivia, I've just been reading your journal at oliviaamyprice.wordpress.com/ which makes interesting reading. With you being in the medical profession, I most certainly would't try and teach you how to suck eggs when it came to medical matters.
However, I totally understand your loyalty to your work colleagues and patients even though your now working part time. There is a saying that, "Doctors and Nurses make the worst patients". Your body is trying to tell you that's it's struggling to coupe with the work load and demands your putting upon it. So, I really think your going to have to make some changes. until your liver transplant happens, and even then as you may well know, your not going to be able to return to work for at least six to eight months afterwards. There are going to be times you may well feel fit and able, but with having had your immune system turned down in order to prevent rejection, your body will be vulnerable to infection. You'll defiantly be having to make some life style changes.
It's none of my business of course and I understand that your partner is having to work long hours so he can't be with you. I wouldn't mind betting though that if the shoe was on the other foot, and your partner was the one with this condition, that you'd be doing everything you could to help, support, and be there for them ever step of the way. Besides, you will need to have someone there at home to help you after your transplant. That is one of the terms of your discharge after transplant.
People become Doctors and Nurses because they want to make a difference, they are unselfish, loyal, and dedicate. They are both passionate and compassionate people. But they are only human too. It would be nice to think that when you guys are in need of some help and support, then you above all else you are the ones who deserve it in spades.
If there's anything I can do, then please let me know.
I agree that drs and nurses can be the worse patients, however I finally realise after 4 years of pushing myself as much as I can, then soon ending back in hospital, isn’t going to help things in the long run. I’ve been told to look after myself by my colleagues but when I see them running about trying their best to manage time, I can’t help but feel bad and do my best to help them. Unfortunately at the moment, im not as efficient as them.
I think back to the time when I was able to work full time in A&E, go to the gym 3/4 times a week and have a great social life, and wonder whether I will get that energy back. I’ve always worked hard and able to keep up with everyone else until everything changed in 2014 when I developed ascites. It was from then, I started to go downhill unfortunately.
Thanks for the advice and support. I’m glad I have someone to talk to who have been in my shoes.
You will get back to full fitness but you need to listen to your body if you’re going to maximise your recovery. I was a nurse in renal dialysis and I had to stop and am applying for early retirement (I’m 54 and worked in busy London units, then I moved to lovely quiet Norfolk and have managed to improve my outcome predictors!
Wow your burning yourself out.. I couldn't even walk up my stairs I was knackered constantly, you really need to tell them you can't do it and that you need help ... Show them this site if you have too at people's old posts and current ones of what people actually go through ... Your liver is struggling to keep everything going but it's broken so it can't keep up. Loss of appetite is normal I can't remember being drenched in sweat but anything is possible with liver disease as it controls our internal thermostat.. I hope you get your call soon and more importantly some more support from your family x
I’ll speak to my boss if she is in tomorrow. I’m dreading going in actually. It’s crazy because this time last year, I was really active and coping well at work. Now I’m struggling to do the simplest of things.
It’s easy to forget because I look ok on the outside, but not feeling that way on the inside. My first day back at work after having 4 weeks off. I had energy to do my job reasonably well, by the second day, I couldn’t work as well. At the end of the week, I was so drained. It seems as if my energy levels are short lived.
Are you in your union? Not to stir up a fuss, but more for the advice they can give how best to move forward with this.
I can understand the desire and need to stay in work as long as you can, there are actually advantages in doing that. However, if its getting to the stage where that is no longer possible then you need some good professional advice on how to move forward and what options are available to you. Have you had an occupational health assessment? Is there other work you can do for your employer?
You are strong no doubting that. I believe if you haven’t taken them to visit your doctors it’s time. I as long with all the others here we understand your exhaustion there is medical reason to rest so do it , take a nap , I have a hard time sleeping until I am totally exhausted then I sleep. You should rest with pride you deserve it.
Hi Olivia, I am in a similar position to, but in my case my cirrhosis is compensated, so not on Tx list just now. I have severe fatigue and aching joints. My wife ( a retired Matron ) even with her medical experience, does not really understand how cirrhosis symptoms can affect the sufferers. I have mild HE, and did have ascites ( although mild), but having to do all the jobs she wants doing really tires me out. I think you should get your family to accompany you to your next appointment, and ask the consultant to explain to them the resultant effects of cirrhosis you are suffering. Speak to your line manager and Occy Health, and they will, I am sure sort out a way for you to continue to work as and when you can. You really must look after yourself, and show them your post here, and the replies from fellow sufferers.
Olivia, i've read through your amazing blog. My goodness you've been on a roller coaster ride of being on and off and on and off that list. My thinking having read all that is you need to take care, don't absolutely wreck yourself. You don't want to become too ill for transplant. At this stage you need to be looking after yourself, exercising a little to keep your heart and lungs healthy, eating well and enjoying life a bit. You certainly got yourself a pup that needs plenty exercise ............ (my brother has a sled dog team of huskies).
Hope today goes well and you can take the time off you need and fingers crossed that call comes soon and you get well on the road to recovery a.s.a.p.
Hi Olivia I am facing similar problems although different causes I am going through complex to for hep c I’m a nurse I have cirrhosis partner also cannot look after me and no family I am sick , tired all the time weak like a newborn kitten can u ask work to reduce hours ? Take some time off to gather yourself and have a rest ? Your family HAS to come to the understanding you are seriously ill and hopefully act accordingly can u afford to have someone to help with house keeping I also have a dog and have had to hire a dog walker money is a problem as we r nurses and wages are disgustingly low. I have gone off sick as I work for a private hospital sick pay is shite and I have run out of sick time . You have to do what’s best for you . Having a puppy is a strain think about what’s best for you and the pup . I wish you the best I feel your pain I am here if you need to talk it’s not moaning you have legitimate issues try to accept help from wherever you can get it . All the best
I have spoken to my parents about what will happen post transplant and have come to an agreeement that I will be at home to recover. I’m planning to bring my pup with me as I don’t think he can be looked after whilst my partner works. I’m not sure what his plans will be with work as he will be hard to replace at his company.
I have occupational health on board along with the Matron covering the ward. I’ve been put to work as supernumerary and not currently fit to do drug rounds. This has all really helped, but at times as you know, we are low staffed. Maybe I should start drinking cofffee as I have heard it benefits the liver in some way?
My pup gets enough exercise and I fully make sure of that. My parents now are starting to realise how much I’m struggling, so have offered to have me and the pup over for the weekend. They live in the country side and my dad is always in the field somewhere, so will be happy to take my pup along. He will no doubt get plenty of exercise.
Thanks for reading my blog everyone!
Much love
I have had AIH for ~9 years now and despite numerous hospital visits, it has taken until very recently for my other half to get to grips with my exhaustion and tiredness. I have whole periods of time where everything is ok and then bam! I have a setback and the tiredness etc takes over. He still doesn't fully get it when I say I need a break (and I mean now-rightaway) and will continue exploring the city we're visiting, oblivious to the fact that I am some way behind. He is not a bad person, but unfortunately when you look well enough, it can be difficult to convince people (even the nearest and dearest) that the energy tank is empty.
We recently tried to explain to my in-laws what was going on, as the situation of being listed for tx has recently been mentioned and they did not get it at all. I honestly don't know what the answer is to this situation, but many others have given you some good advice, so I don't need to venture there. Suffice to say, you are being hard on yourself, when the energy tanks are empty, you cannot force yourself to be Wonderwoman. Listen to your body and accept that if people have come to visit you in your house, then they have come to see you, not your immaculate carpet!!!
I really hope all goes well for you with regard to the tx and that your energy levels pick up when your body (if not your mind) is ready. Your attitude is very positive and perhaps you look as if you are coping too well (if that makes sense). Your dad taking the dog for a walk is a step in the right direction, just keep on going. All the very best
Well done you ! I was an O.T. And didn't manage to work while I was on the waiting list I was to exhausted and believe you me I loved my job and wanted to work. I guess I couldn't do it justice so had to give in in the end. I would definitely consider not working as your testing yourself and others by continuing. It's almost an avoidance strategy and no one is going to believe how sick u feel until u allow ur self to really feel how u feel. Post transplant u will have a new lease of life . Good luck hope ur not waiting long x
I think you have things well in hand there. Sounds like a good plan. I'm also pretty sure that the company your partner works for will also be understanding with any request he will make to support you when you have your transplant. Most companies are these days. He should take advantage of that. If he hasn't spoken to them already it would be well worth his while doing so. I'm sure he'll want to be with you when you go for the transplant.
I must admit whilst i was still in work when i got the call for my transplant, i'm not sure i would have been able to for much longer. My little bouts of falling asleep at the desk were starting to get noticed, lol.
Whatever happens, good luck. I hope you get that call soon.
I’m on standby for that call every day and realise that it may be a while. I think I’m doing my best to find things to distract myself with. I’ve taken up knitting, looking after pup and work. I thought that I’d be able to find a good balance with work/life. After trial and error, I realise that due to not knowing how your going to feel each day, it’s almost impossible.
I feel a tremendous sense of support through my blog readers, friends, family and Health Unlocked community, not to mention QEHB liver team... so thank you so much everyone.
Kristian - I think at times I’ve almost fallen asleep on my break. I also remember falling asleep completely, with my manager watchIng me during handover. She sent me home straight away as she could see how exhausted I was.
Denise15: are you back to work as an OT? I bet that must be a demanding job as you are constantly moving between wards and visiting patients houses to asssess living arrangements.
MC1189: I think due to ever changing situations and energy levels, it’s easy for people to think that it’s just an average persons sleepy day. Just one to recharge and relax after work or a busy schedule. It’s not just sleepiness, it’s complete full body exhaustion, where even getting up to get a cuppa is too much to face. I mean I can look after myself, but I know that I could benefit from extra help. I worry about how my partner will cope when I’ve had my transplant. The decision to go home, is the best idea as it’s fair for everyone then. My dad will be retiring soon and mum has planned to reduce her hours.
L444: I’m now on half pay so have to work a few more months to get back up to full pay again but despite paying bills and mortgage, hopefully I won’t need to spend much. I’ve been putting away some savings to ensure I have a bit to keep me going as I’m never sure what the future brings. You are right though! Nurses pay is dire!
I’m sorry I haven’t replied to everyone, but I truest appreciate all the advice and support you have given me. I’m feeling much more positive and lucky to be alive.
Thanks for taking the time to reply. Sometimes you wonder if the post has been read or worse still you have upset someone with your comments. You have a good head on your shoulders and I am totally convinced that you will come through it all with flying colours. The fact that your family are actually pitching in already is really positive. Don't worry too much about how well your husband will cope, he will do his best I am sure and if the housework gets neglected, then I'm sure that if you asked one of your colleagues to help out, they would . After all you did say on your blog what a great team you are. People always want to do something to help and usually something practical. I know it's hard to ask, but it may just remove some of the worries.
Hi Olivia, I have been on the waiting list for 15 months and feel the same. I do still work full time which does include a fair amount of driving. I have arranged with work to work from home on a Monday which really helps me with the rest of my week. I work 8am - 4pm, I struggle in the mornings to get up, but I put that down to lack of sleeping that night. I eat as well as I can I have a problem with my spleen at the moment along with the Liver Cirrhosis, Blood cancer and portal vein thrombosis, so eating is a challenge, but what I eat is full of nutrients and protein. I drink lots of water throughout the day - Ice cold as I find it easier to drink.
I have explained to my family that I kinda need them to back off a little and let me see what I can do myself. If I had too I would drop down to part time hours, however I really don't want to go down that route. I do have the advantage of working at home when I am poorly. I find the weekends is where I catch up on most of my sleep, spending days in my PJ's are great. I would definitely recommend chilling at the weekend and doing what you can throughout the week, you need to explain to your family that although you look 'well' in actual fact you really don't feel it and you need to start resting of an evening when you come in from work.
If they don't understand it point them in the direction of this group so they can ask the questions that they potentially have. My other half is in the Royal Marines and is working away, he has been for three years - I don't like him seeing me not well, I suffer though when he goes home, I am super tired, feel sick etc....to be honest with you he wouldn't be fussed if I was ill with him around.
With regards to you doing everything, housework, shopping etc., you need to tell your partner that you are in a relationship and that means he has to take the strain, when your in recovery from your transplant you won't be able to do it all yourself. But remember you don't have to do it all, if you didn't do these things may be he will notice something's not quite right and step up.
I know I am a bugger for ignoring my body and then suffering the consequences, but it's not big or clever. I think your Mum's right about you working, it's been a huge help to me, and I know others that have worked all the way up to there calls. You need to stay focused on something other than tx or you will spend your day googling or looking at your phone wondering when the call will come......
Whereabouts do you live? Maybe if your close enough we could meet up for coffee and a cake (Caffeine and sugar the best remedy)
Stay positive and talk to your family - call a meeting tell them all in one go, let them know you need some help, if it were your partner or family member going through it all you'd want them to talk to you! xx
I can't believe you're able to do so much with end stage liver disease. When I was waiting for my transplant, all I could do was a couple of hours work on the laptop and the occasional driving to the shops. My wife, who I am so lucky to have, was doing half my work, looking after me, our daughter as well as herself and housework.
You're an inspiration! Hope you get that call soon x
I was flat out for 18 Hrs out of 24 before my transplant. We are all different, each journey is unique. I suggest you get your unbelieving relatives to attend a special meeting with your transplant co-ordinators with nothing on the agenda apart from ensuring everybody involved truly understands your position! I send all my love and best wishes, just get those "hangers oners" up to speed with your illness! probably doesn't help you being a nurse, determined and not giving up (which is good!) BUT the others need to be educated! keep strong (as you can)
How you manage full time hours Chelle, I don’t know. I live just outside of Birmingham btw. 15 months wait too? No wonder you’ve kept up with work as I’d go crazy without it for that long, however, I have taken everyone’s advice on board. I realise that no one is going to know fully how I’m feeling which is why I need to start fending for myself by giving myself a break when I need it.
I’ve also learned not to plan anything as much as I can as you never know how you’ll feel that day. One min I’m up, next I’m down.
Wow. I felt exhausted just reading your post. I was working with small children when I first had cirrhosis and had to eventually give up because it was far too exhausting. Ended up spending more time in hospital than in work. So you’ve done really well to carry on for so long. Exhaustion is one of the things that a lot of people with liver disease suffer from. Is there anyway that you can cut back your hours? Also maybe ask trusted friends or relatives to help out with the house cleaning or walking the dog etc just so you can get some rest when you are at home. I wish you luck and hope you get your call soon x
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Real tough time of late
Liver Transplant Waiting Times
Must be running out of time
Hi all, I'm back again but struggling 
