Post Transplant

Hi everyone, first time in an online forum!! I have polycystic kidney disease which also caused me to develop a polycystic liver. My liver started to produce multiple cysts which caused my liver to push up my diaphragm, pushed up my lung on one side and had grown down to my hips, pressed on my stomach and I looked pregnant.

Anyway went through the assessment at Birmingham's Queen Elizabeth and ended up on the list in March this year. I was so very lucky because I was only on the list for two weeks and the call came at 22:30 on a Monday night (I think my blood group of A and my size, I am really petite, helped). As someone else said I was oddly very calm and the operation went very well.

It has been 6 months since the transplant and I am still not back at work, suffering back and joint pain, the wound site is still sore and I have just been diagnosed with osteoporosis.

I would be really interested to hear from other transplant patients as to the issues they had after their transplant and whether they went back to work.

Many thanks

Rachel

8 Replies

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  • Hi, I'm 18 months post transplant. Dr pieria was my surgeon at Birmingham QE hospital . I had hep c, then cirrhosis then liver tumours. I was in hosp 6 days and returned to work ten weeks later. I am a warehouse manager and have varied duties so I just avoided anything difficult or heavy lifting. Touch wood I have been fine since with no issues or pain at all. I do get tired easily and don't have much energy as I should and I'm 45.

    Birmingham are brilliant and I go back every 2 months for check ups.

    Hope you overcome any issues.

    Danny

  • Hi Danny, thanks for your reply, Mr Perera did my transplant as well, although he did the first bit in taking out the old liver (which was 19 pounds in weight) and then Professor Mirza put the new one in and closed up. I agree with you Birmingham are really good, however, I am now going to be seen in Oxford as my consultant does one day down there and its much nearer to us. I am very impressed you went back to work in 10 weeks. I left hospital after 4 days but 6 months later our company doctor says I am still not fit enough to return to work, rather frustrating!!

    Regards

    Rachel

  • My transplant has been a success after nearly 2 years post transplant. However my operation was very long(10hours) and I was so ill that I was placed in an induced coma for 2 weeks to aid my recovery. As a result I now suffer from an abdominal hernia on my operation scar but more importantly periferal neuropathy, which has left me with a variable amount of pain and loss of balance and coordination.

  • Goodness 10 hours is a really long time, glad to hear it was ultimately a success but sorry to hear you have issues.

  • I was in hospital for 11 days and I had a gentle, phased return to work about 4 weeks later. I work from home a lot and that made it much easier. I had my transplant in Leeds in December 2011 and I have been well since apart from a couple of medication related issues that led to weight loss. It might be worth checking with your consultant about what might be reasonable for your to expect. I would be inclined to want more than your company doctor's opinion: he may be looking after their perceived interests rather than yours.

  • Thank you Mike

  • Good Morning,

    I am sorry to hear you are still in pain. I would mention this at your next consultation as after six months the wound site should not still be sore. Your back and joint pain may be due to the osteoporosis but I would mention this to your consultant also as it wouldn’t hurt to confirm the cause.

    If you are in a lot of pain they may be able to recommend something to help manage the pain. Have the consultants signed you off to go back to work? Do you feel ready to go back? Has the doctor at work said why they do not feel you are ready to return yet?

    Kind regards

    Sandy

  • Hi Sandy, the doctor at work is saying no to work due to the fatigue levels and pain that I have. I also don't feel ready to go back, I wake up fatigued so the thought of going to work and having to concentrate is too much at this point.

    Regards

    Rachel

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