How do people deal with being on the waiting list for a transplant? also silly question but what do I need to have in my transplant bag?

I got put on the list on Friday last week. I was really relieved but im also feeling a bit weird and worried about the fact that they could call whenever? I've been backdated to july - when I was first assessed - so dr's said I may not have to wait very long, just wondering how people deal with waiting in general..

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  • Wow you look young to be on the tp list! Fingers crossed for you. I haven't had a tp but was in hospital for a liver resection. Generally you cant take much in with you as there is very little storage space and I would guess you will be completely 'out of it' in intensive care for a few days, so maybe it will be up to family to bring stuff in for you as you recover. But I would suggest nice smellies for washing as soon as you feel up to it, a mini fan or atomiser spray for water as hospitals get very hot. A small amount of money for buying odds and ends. And whatever you feel comfy in in nightwear, slippers, dressing gown. Most hospitals allow you to use mobile phones now (not so sure about ICU or HDU) and once you get transferred to a ward there are bedside TV units but you need ££££ to buy a card to operate these - they have headphones and can help stop you get very very bored during recovery.

  • Yeah i'm 18 so fairly young I guess! And thanks they're good suggestions I just keep feeling like I've forgotten something but I think that's probably just nerves! Thanks again :)

  • Going on the transplant list is a strange experience. I went on in June 2011 after a diagnosis of cancer in March that year. In some respects, life continued as normal because I had no overt symptoms so was not "ill" in any way you would expect. This did mean that I was able to continue to work and to go out. Because of travel restrictions - no more than three hours from the hospital - we did spend a lot of time exploring places on our doorstep and that was good. The waiting, however, can be frustrating and I did have one false alarm (November) before the real thing in December.

    I hope you don't have a long wait and best wishes for a speedy recovery post op. Life for me two years (and 1 day) down the line is good and I am writing this from Tenerife as travel is now back as an option!


  • Yeah I'm still going to college and work most of the time which is a good distraction. I'm only allowed to travel within an hour of my house because I have to travel to London for the actual op too so the restrictions make it a bit awkward but its a good idea to explore the places near me so thanks for that :) Yeah its getting easier with Christmas coming because ive got something else to focus on but it is still really strange too not know when im going to be called!

    Thank you, that's great! I'm glad everything worked out for you

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