Back to work post transplant

Hi all, thank you all for your help and support previously :-) How long after transplant have you gone back to work /normal daily routine? Online it says to wait at least 3 months, my liver consultants say give it 6 as I was very unwell. It's been nearly 4 months since my liver transplant, as I've been sick a while I've been worried about money. I don't think I'm entitled to any help as I'm not disabled even if I have health problems and I would quite like to get back and be around people. I'm an accountant so it'll be a desk job with no manual labour. My health condition can still cause problems such as severe nosebleeds because of HHT and fainting because of anemia. I'm also worried about finding work as how to explain the gap of not working (I was on a contract and my maternity leave ended at my previous place). How has everyone found their experience of returning to work after transplant? Xx

14 Replies

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  • I don't know what your family circumstances are as regards your partner's employment status etc. - this might impact on the payment of benefits like Employment & Support Allowance (this is the benefit which is payable to those whose health condition prevents you from working). ESA is means tested.

    Although you arn't disabled you do have a long term health condition which impacts on your daily life so you might be eligible for Personal Independence Payment - you can get this if you are in or out of work and it is meant to cover the aditional cost that a disability or long term health condition brings.

    My hubby who has cirrhosis gets both ESA & PIP.

    Your local Citizens Advice Bureau ./ council Welfare Rights Officer or the Job Centre should be able to advise you on what you can apply for.

    You certainly shouldn't be rushing back to work before you are fit enough as it will potentially set you back with your recovery.

    Katie

  • Hi Katie,

    Thank you for your reply, You're right, I should contact the CAB or someone who can offer advice on what I could claim in terms of Pip or ESA, I always feel like a fraud even when I was at my worst. I think it's as in my mind I don't think there's anything wrong with me (stubborn) but when I try and do things I'm proved otherwise.

    My boyfriend works in IT for a local University. My mum has moved in and doesn't work, but is helping me with the baby and 2 older children, she gets carers allowance for this. Sometimes I feel tired 😴 and I nap a lot whenever the baby sleeps I sleep so not sure how I'd handle a full days work!

    I suppose I want the feeling of going back to normality almost like nothing happened, if I wasn't on a contract at my old work and was still there I'd ask to go back part time to test the water. As it stands I have to find somewhere new, it's good to hear that people are very accepting of having a transplant. I guess a job interview works both ways as I wouldn't want to work somewhere that wouldn't let me go to a hospital appointment because it's month end etc..

    How is your husband doing?

    Alicja xx

  • Personally I was back to work after 6 months. Physically it could have been 3 months and I started looking after about 4.

    I recovered quite quickly and only really had a minor setback when I came off predisolone after 3 month's.

    I was getting about £100 / week on ESA, I never really qualified for PIPS as I was independent a few weeks after surgery. So financially I had to get back to work.

    Be warned about the citizens advice bureau. I had a terrible experience with them, and I think the quality of their advisors is varied.

    Probably a major factor is what your job is. I'm in IT so I'm at a desk the entire day.

    I explained the gap in my CV honestly. I actually thought it was an achievement to be back to work so quickly. However I appreciate your concern because I know that some employers would be concerned that you might be constantly off sick , and wouldn't take the risk.

    I was honest and upfront about future hospital visits, and the time I would need regularly for these appointments. I think I offered to take them as holiday, but that wasn't necessary.

  • Thank you for your reply. I remember you saying before you do a lot of fitness things like cycling? I've done good after transplant.. I think but don't think I'll be running around anytime soon. I went to a play centre the other week with the kids and went down one slide and I was knackered!

    I have been living off a fairly small amount of money which is just statutory maternity, but luckily expenses were low for a while as I was accommodated in my hospital cubicle for a few months.

    I have had some bad run ins with CABs in the past too. Generally they just seem very busy (maybe that's just a reflection of the area I live in!) or sometimes not completely knowledgeable but It's probably my best bet in finding out any entitlements in the interim before working. What problems did you experience?

    I agree about answering honestly, it might be difficult as if competing for a role with someone healthy I do worry they'll think I'll take time off sick a lot, but I do need that time for appointments and don't want to feel pressured to go into work when unwell. At my last work place my boss drove me to A&E as I felt too stubborn to call in and admit I was ill!

    It sounds like you found a nice and understanding place to work :-)

  • Hi Alicia, I think the best answer is "It depends" - largely on how well you feel, what sort of demands (mental as well as physical) your job makes etc. In my case, I made a gradual return to largely home office-based work after about 6 weeks but my situation allowed me to stop and start when I felt like it etc.

    As far as work history is concerned, I think you have to explain your situation openly - if nothing else, this enables you to make time off for hospital visits etc. as well as accommodating those days when you don't feel too well.

    Katie's advice re allowances is spot on - get some financial advice and you may well be eligible.

    Mike

  • Thank you Mike, I will definitely look into more detail about allowances and possibility of taking more time off. Not sure if I would be too distracted to work from home!

    Alicja xx

  • Hi, I waited 12months before returning to work, I had some issues but I also had a good contract which allowed me the time off on full pay for that period of time. When I did go back I worked for 12 months then retired ( manual heavy work ). Take time to recover , folk have different recovery times, no job is worth your health. I hope you recover quick.

  • I am self employed, running a B&B with my wife, I still experience fatigue, (18 months past tx) in fact about to go to bed (13:00 Sunday, breakfast done and cleared, regular P.M. nap) if I was at normal work I simply could not consider it. Every journey is unique. There are no rules or norms. other than treat yourself gently, it has been a massive event, even if you are superhero material, you need to be gentle....I planned to run a 5K run 6 months after my tx, for me NO chance! some do.........good luck.

  • Pcbnpbc, I'm not surprised you still have fatigue. I've been told by the hematologist's that transplant will not cure the fatigue caused by pbc as the anti mitochondrial antibodies cause problems on a cellular level. We will always have the ama, even after transplant. Fatigue is my worst symptom, I find it very debilitating, so I feel for you. I think you just have to listen to your body, and rest when you need to.

    Take care

    E

  • I'd be happy just to walk 5k! I'm far from superhuman, I just worry this is as well as I'll ever be so might as well get on with it!

    Alicja xx

  • Alicja, you nearly died, i cant believe you are thinking of work! You wrote on here that you couldnt even hold your baby - who is now presumably still under a year old. Enjoy your life, enjoy living, enjoy your baby. If you really must work, research doing home-based book keeping or something. Dont try to be Superwoman, you nearly needed a triple transplant and we though we might lose you.

  • Hi Bolly,

    You sound genuinely concerned! When you put it that way it does sound too early. I showed my boyfriend all the messages on here and he said Bolly is right. My boyfriend definitely wants me to spend more time with the baby and he nearly lost me too.

    I should of perhaps put more updates on here (just in case anyone was concerned) when I was unwell but I really didn't know what was going to happen I was in a cubicle on my own 150 miles away from my family with my boyfriend staying one night at the weekend. I don't know why the doctors took so long to decide I just needed a liver transplant (should of done the assessment quicker), the main thing for them to decide to go with it is I'm young and the lung op I had really helped my heart (apparently I only had a 50% chance of surviving the op before this) I remember first getting to Newcastle and being terrified they were going to do a procedure that was likely to cause me more harm than good. The time I lost my cool was when a lovely lady who I chatted to a lot passed away without warning on the ward. Sorry I'm rambling... Not sure I'll ever get over the psychological side of those few months :-( I'm thankful for this forum to talk about this with. (sorry I've gone off topic).

    Alicja xx

  • Alicja,

    I was too in Freeman, 220 miles from home, with Angie my wife left to run our B&B in N. Wales on her own...spent many weeks alone, but pre TX was so "out of it" I might as well have been on my own, of course Angie spent November 14 up there it adds to the stress if home is a long way away.

    Now! You ! Take it easy for a few more months! discuss issues with your consultant and TX team, you are not the first and will not be the last who might need some help in addressing issues post TX. enjoy the new life you have just been given, take care , love xxx

  • That sounds tough, was there a reason you had to go to Newcastle rather than somewhere closer? Before transplant I was completely aware of everything but I was physically useless. My liver blood results kept improving and HE went and jaundice was reducing , it was that tedious abcess/s in the end. Thank you for your advice. I probably do go on about everything that happened a lot.. especially to my partner(and on here! lol) . I just think the transplant team are quite busy to find time to talk to them when I go to clinic, the social worker I haven't seen around on the last few visits. I sometimes visit ward 12 on clinic days to say hello to the nurses, they comment how different (and bigger!) I look now.

    Alicja xx

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