After liver transplant

Hi nearly 3 weeks after having my liver transplant and doing fine up to now x can't wait for pain to go away though feel like I've been knocked over by a bus lol would love to hear from any one else who has had a transplant as this is all new to me . Had it done at Leeds st James home after one week love been in hospital longer with a urine infection in past lol. still feels surreal can't believe it . Thanks for reading.

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  • Should say have been in hospital .

  • Ok matey early days long way to go but u r on the right road now

    Lucky to b home so soon my hubby was nearly 1 month in

    Just had 5year traniversary.

    Doing ok

    At least better than being dead :we believe"

    Good luck

  • Home after 1 week!!! Blimey. I've not had transplant yet, not even made the list yet, is that average time in? What have other people spent in after op?

  • Hello and welcome to our exclusive club !

    Would have prefered to have not had a liver transplant - but glad I'm completely well after 9 months

    I do think one week is a bit hasty. I had to insist that I stayed until I was completely ready. I was discharged 18 days after the operation. I fully understand that they want you to be mobile and fit for discharge as soon as possible, and they need the beds. Another issue is, the risk of infection is far higher in hospital and the infections can be quite serious. But I think we should be discharged when we feel we are absolutely confident in our ability to function at home.

    My advice is, take it slowly and you will be surprised how quickly you return to normal. I did a 5k walk charity walk for the Royal Free 9 weeks post op. I'm now gearing up to play competitive table tennis.

    You will find, hopefully, if all goes well, that it is literally a new life and a better one.

    Take care,

    Jim and Lucy

  • Thanks for the reply. I am taking it slowly but steady. Had a little walk today with the dog and my daughter . It was lovely to get some freash air there's only so much day time tv any person can stand lol

  • I'm so glad to hear you recouperated so soon. Unlike myself I had my transplant in 2015 after waiting 5years. I have had numerous complications re other conditions. Before my transplant I had encephalopathy several times and ascites of the stomach, then seizures I also had to have my gallbladder removed. Numerous lnfections where I was placed on a life support machine. Fractured a bone in my spine learned how to walk 3 times after several incidents caused by seizures. 3 blood hemorages on my brain which are still there. After my transplant I had a seizure then a stroke. I now am anemic, have epilepsy, ataxia constantly tired sore joints and continuous UTI'S. I feel like I have been to hell and not back yet. I see 2 liver consultants, neurologist, occupational therapist, starting physiotherapy, health psychologist apps, I know I should be grateful I'm alive but I have no quality of life. The consultants say I'm a complicated case. I think it's their own way of saying they are unsure how all this is happening to me.

  • Hi, Glad to hear your doing ok. There will be a few ups and downs but you will get through them. Just take it steady and rest , enjoy your new lease of life and keep posting..

  • Thanks I will .

  • I too had transplant in Leeds and spent 11 days in hospital. Pain diminished over time and I was supported by meds. Like you, I returned to exercise as soon as I felt able. Five years down the line, I am still well and enjoying life. I hope the same for you.

    Mike

  • Thanks I hope I do as well as you have. Up ward and onward 🙂

  • I'm almost 4 years post transplant. I'm over all doing well, but I do remember the pain!! The only thing I kept saying was, it won't be forever and I'm sure the donor families pain is worse. I too stayed in hospital for exactly one week, don't feel like I needed to be there any longer.

    Wishing you loads of luck, remember pain won't be there forever..in the end I started whistling!! It regulated breathing, helped when I sat down or got up lol!!

    Keep smiling

  • I'll try that . Lol and your right about the family I think of them every day . I even speak to my liver doner maybe that sounds weird . And complaining is not me I'm your typical get on with it northern woman lol

  • Not wierd at all, every Christmas, anniversary I go to Lichfield cathedral to light a candle for my donor. (I'm not at all religious but some how take comfort), I also buy flowers and think how old he would be now. It helps me remain positive, he died at 15 but his selfless act saved me and 2 others. Puts things in perspective, all donor's are heros and all recipients are extremely lucky.

    I also used a small cushion or rolled up towel to press gently against wound, it helps a little if you cough or feel a sneeze coming on.

    I to was stubborn, wouldn't really let on how much pain I was in, but do tell someone and try to let people help. Do a little yourself to make yourself feel normal but let someone take the strain for you. In a few months you'll be feeling like you can take on the world, and everyone will step back, make the most of it...4 years on people forget what you've been through and you'll wished you made more of it ;)

    Take care and don't watch any comedy programmes, I watched Peter Kay after transplant, convinced he was trying to kill me...pain was too much 😂.

  • How lovely what a nice way to remember him x

  • having part 1 assessment 20th February so keen to do what I can to prepare myself. I assume that the tests in part 1have to be okay before you can progresdto next stsge?

    congrats on your surgery and doing so well... any tips on the whole process gratefully recieved.

    were you long waiting. best wishes caxer

  • Hi had my assessment in November it's just tests to see how your body is doing and where u need to be on list if accepted . u go for an afternoon where they discuss with you and family what to expect when a doner is found and to sign consent form . I got my call on 2nd of January , I was on top of the list though even though I felt OK and expected them to say I'd got ages to go before I needed one . Good luck on your assessment keep me informed if that's ok .

  • thanks v. much seems to vary quite a lot from one hospital to another. cheers cazer

  • I was only on the waiting list for 7 days and in hospital for 7 days so you can realise how overwhelming the experience was for me. You can expect an uphill battle and a few of side effects. I had my transplant last March 2016 and had problems with my prostrate, diabetes, anemia, high blood pressure and CMV infection. This past 6 weeks I have felt fantastic and on top of the world. Ironically you do get used to being down in the dumps knowing that things will pick up and that you have had a massive operation. To all of you waiting, it is well worth it and you will receive 100% support from the NHS staff, they are professional and brilliant people. Good luck Gaynor in the future. Don't forget every patient is an individual who will experience a different experience..........Dave.

  • Hi have started with high blood pressure and low potassium diet . I know every ones different and it's still early days . I'm taking every day as it comes still in shock though feels like a dream so it must have been an even worst experience for you . Good luck to you too and thanks for the words of encouragement .

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