Hi I am sorry to keep asking lots of questions but I think everyone on here is a great help can I please ask when you have been to the liver assessment unit and they have rang you to let you know you have been put on the list do they tell everyone to pack a bag straight away and tell you to keep your phones fully charged or do they job st tell you that you are on the list Thankyou
Donna xx
If I remember rightly, I think they did remind me about those things. Mine was quite an informal conversation
Hi Donna, Those are standard instructions. The nature of the list is we do not know when that call will come. For me it took 18 months but I did have specific requirements as they had resected my liver previously. When it eventually came first time was a false alarm, second time a few days later it was all systems go. You will eventually settle down and it just ends up being one of those things you have to be aware of. In the meantime keep yourself as fit as you can, eat healthily and avoid alcohol at all costs.
Hi we were told never to be more than half an hour away from home.if u want 2 go away you have to inform them and they will temporarily suspend u and reinstate u back where u were when back.
Have u actually been accepted yet?
Good luck
Hi carmik yes it is my husband who is in the transplant list the consultant told us that my husband needs a transplant ASAP they also said that his blood group is very common so to get things ready and don’t go away anywhere he had to stay near Home x
Donna x
When my mum got the call to say she had been put on the list she was told to have a bag packed and to make sure she always had her phone on her. She decided to pack her bag on a Thursday night 6 weeks after the call, 2am on the Friday morning she got the call to say they had a liver, ended up being a false alarm but then 5am on the following Monday she got another call. Make sure you have a bag packed because you never know when that call will come.
Thankyou very much for replying to me that has helped a great deal hope your mum is doing well x
Donna x
I was never told half an hour, anytime I was going away Cotswolds, and Somerset I asked if it was ok and both times I was told we can get you back from there no problems. I only once was suspended when I went away for a few days to Rome as the waiting was doing my head in.i live in London and am under the RoYal Free
My hubby was listed on a Tuesday and got the call on the Friday.The call was at 16.30 and he was told not to come in till 22oo.Transplant happened at 4am and home 8 days later.Hope this helps x
Thankyou so much x
All he will wear is a hospital gown for the first couple of days.You will need a drink a snack and a book.Dont know where you are but edinburgh has a lovely wee room for the partners to stay in for a few days.
Hi the hospital said that he would Just wear a hospital gown for a few days I’m not sure if they have a room for me to stay for a few days thanks for your response x
I am linking to a couple of leaflets we were provided at Edinburgh - I know they are about the Scottish Liver Transplant Unit but information will still be relevant & helpful in your situation.
nhslothian.scot.nhs.uk/Serv...
nhslothian.scot.nhs.uk/Serv...
We were told on the Friday of assessment that hubby was listed - discussions had taken place during the assessment week about what life on the list would be like. We made up a bag on our arrival home so we'd be prepared - we had also had the discussion about how hubby would get to hospital (in our case a 100 mile trip) and it was decided he'd be ambulanced there rather than me trying to race there - I would follow on.
In hubbies grab bag we had - wash kit, towel, pj's, dressing gown, slippers, a notebook, pen, wet wipes, ear plugs, a book, a pair of his glasses, list of and a couple of days supply of hubbies medication (if transplant doesn't go ahead you'll need meds for day of return home etc.), snacks (again in case t/p doesn't go ahead) also mobile phone & charger for hubby to contact me. We had sited our caravan near to Edinburgh so that I (and our cat) had somewhere to go and stay if the call came - it also proved ideal for the numerous clinic appointments which required us to stay over as hubby can't possibly do the journey there and back in a day.
As i've mentioned previously hubby was on the list for 10 months but delisted due to bloods improving and taking him out of criteria but we've had the trial run of 'life on the list' .... currently making the most of our freedom being of it.
All the best to you both, hope that call comes soon and all goes well.
Katie x
Hi love yer they told my hubby to have bag ready and always have phone on ! Karl never had bag ready or answered his phone so I made sure they had my number who they contacted . We had 3 no goes and the fourth was when it happened . We even packed a bag put it in his car and went in my car lol . Heads where every where. He went on list in September 17 and had op may 18 . Good luck 😉 xx
Thankyou hope your husband is feeling well x
Kings Hospital do. You must be available 24/7. The tricky thing for us is that local beaches are a dead zone for mobile network coverage....
Best wishes
John
Thankyou john x
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