Finally going to be activated on Transplant List 😬

Hi everyone,

Sorry not be in touch for a while...I hope everyone is well?

So we FINALLY moved house 2 weeks ago. It was decided by my team at Royal Free that I am to go on the waiting list and would be "activated" once we moved house (a big enough stress in its own right). Had so many last minute problems with the completion of house and getting our BT landline put on. My husband and my mobile signal has not been great here either so needed a guaranteed phone signal/landline so we can be contactable.

I am being activated on the list tomorrow! Like many of my forum friends, I'm sure the feelings of fear, worry, the unknown, scared, nervous, excited, relief and "the next big step" are all natural feelings....right?

i know my health is becoming worse. My last bilirubin was 170 mmol, my eyes are very jaundiced, skin is an off yellow colour. I can't even run the Hoover round or mop the floor at the moment as it causes me so much pain to my right hand side.

I'm back to see my consultant for my monthly appt this coming Wednesday.

i packed my bag today which is now in my wardrobe and something I will not be looking at again until the time comes. Now, I don't want to sound girlie but if anyone has any tips of things they found useful to put in their bag, I would appreciate your input.

I know I'm going to be in a hospital gown but I've just packed some baggy pjs, slippers, dressing gown, loose fitting joggers and vests (for when I'm a but more mobile in hospital), toiletteries and my headphones - any other suggestions?

I know I'm in for a long wait (I'm blood group O positive) and need to somehow put it to the back of my mind once I make the call tomorrow.

Don't know what questions to ask the liver co-ordinators tomorrow?

I'm so relieved to have found you all on this forum. My family and friends are amazing but don't know what to say to me sometimes about the whole PBC/Liver Transplant bless them.

Knowing I can chat to you all for advice, reassurance and hear your experiences is a calming influence, I know no two people are the same and no two recoveries are the same.

I'm staying positive with the mindset that I will have a successful operation and get back to being ME - Nicki, 41 a wife and mum to my twin sons. I want my energy back and be bubbly and looking forward to a healthy future as right now I'm down, no energy, lost my self confidence (with the Jaundice) and not feeling well at all 😒

Sorry for long post.

Much love to you all πŸ’ž

17 Replies

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  • I've been listed nearly a month, I'm blood type O something, so the long haul for me too.

    We've bags packed and have sorted out some plan A and Bs to cover looking after daughter and animals, as my partner is aiming to come in when I get the call.

    I didn't go mad on loads of stuff to take in, pretty much same as you but probably in boy colours!

    I'm really focusing on keeping as fit as I can, just some basic home exercises to keep the muscle loss at bay, my bilirubin peaked at 280, has dropped last blood test to 243, but was on some bile acid pills to help with the jaundice, I been told to stop those so they obviously effected something else. My blood tests are a mess, but I can carry on with life, actually I'm starting to forget the numbers and focus on how I feel, my ukeld score was 61 so nearly at priority listing, will see if that changes at next clinic visit.

    I can say I'm ready for this, it's been 3 years of build up to this point.

    I hope it all goes as smoothly as possible.

  • Haha your message made me laugh as most things even my hairbrush are pink πŸ˜‚ My twins are nearly 15 and starting their GCSEs when they go back in September so not ideal. School are aware of my health and allowed them to have time off at the start of my operation for back and forth to hospital with my husband as one is type 1 diabetic and although he handles it so well, the stresses and worries of his mum is going to a struggle for his sugar levels.

    I know my assessment results score was 56 but I don't really understand the gradings.

    Like you, I try and stay as fit and well as I can. I've noticed lately by 8pm or 9pm at a push, someone pulls the battery charge out of me and I'm ready for bed with zero energy πŸ’€

    Keep me posted with your appts and hope you don't have too long to wait x

  • Basically very similar symptoms, but then since I have a mechanical obstruction leading to secondary Billary cirrhosis I guess it's going to be.

    I have found that if I can stay more active I'm better through the day, but if I have a lazy one I'll be in bed around 5 ish for a couple of hours, then back up again, I have noticed that it feels some nights like the plug has been pulled out, not sure I want to know where it plugs in anyway!

    I have a 4 year old daughter who starts reception in 2 weeks, she is my world, my weakness when I'm low is thinking of the what ifs, but it's not a place I find myself in too regularly.

    Next bloods are on the 1st, then in clinic on the 15th and again on the 27th.

    Ukeld score will be the figure you were given, it's a way to gauge your medical position, helps with the who's first thing, the higher the worst, 49 is minimum criteria, 63 is start of the priority list, so you middley ish.

    As I've said in other posts it's a number it doesn't mean a hugh amount as far as I'm concerned, if I change 1 point up I don't believe I'd notice the difference.

    As a typical bloke if the packed bag was left to me It would still be in the cupboard, although this does mean all my stuff is in a Disney eeyore bag, at least he is the grumpy one so that is representative!

  • Hi nicki, first of all glad to hear you are in you're new house, hope you don't have to wait too long on the list, girlie tip for hospital bag is a mirror, vain I know but in a ward with 3 other females my mirror was much in demand, another thing I found useful was a small fan as I got so hot with the medication and stuff and also a light dressing gown for the same reason , good luck I will be thinking of you πŸ’œ

  • Hi hunni πŸ’ž

    Lovely to hear from you. I haven't even packed my make up bag but will pop a mirror in my bag πŸ‘πŸΌ

    Seems to be common with everyone but I've got a warm dressing gown as I'm CONSTANTLY COLD. The only day I felt OK was last week when it was 31 degrees. My husband says I'm like a radiator in bed with the amount of heat that I generate but I am always freezing cold!!!!

    We have a little fan at home so that can come with me.

    Hope all is well with you. I'll keep you posted xxxxx

  • YES to the fan!!! and Earplugs! lol

  • Hi, Kimberley, how are you hope you are well after your recent op, think about you often usually with a smile on my face, now with a wee cute pickle image πŸ’šπŸ’™πŸ’œ

  • Giggles

  • Good luck and I can only guess how it feels -scary relief etc. My husband is hoping to be added to the list next month -he has one more test on an exercise bike and then st James Leeds said he will be added. Interesting about the energy plug! He is the same -absolutely exhausted and in pain with his joints at night. He said it's like his body just seizes up at end of the day. Think his score is 51 and I want to ask the coordinators how long he could be on the list but my husband said that's a question they never going to be able to answer

    here's hoping you won't be too long πŸ˜€πŸ˜€

  • I too believe the answer is you just don't know how long you will be on the list...but you need to be ready any time day or night. Wishing your husband well with his other tests and keep me posted. Nicki πŸ’ž

  • I suppose I'm in a pretty good position to advise you as I had my liver transplant at the Royal Free on March the 11th this year. I had been on the list for exactly two weeks when I got the call. A very exciting blue light and siren ambulance journey is almost the last thing I remember before waking on the 13th with a voice saying "you have your new liver and everything has gone well"

    I was discharged home on the 29th (my birthday) On the 3rd of July I completed a 5k charity walk for the Royal Free charity, the money going to ward 9 North where I spent my recovery period.

    The nurses, doctors, physiotherapists all worked to get me sitting up, then out of bed and walking. All very hard work. They will not let you rest ! But you will be grateful afterwards.

    You will see the familiar faces of the nurse coordinators and lots of new ones. You will have a busy time getting used to being well again. I felt like new from the moment I woke from the operation.

    As for the bag. To be honest for the first week you wont really care much about belongings. After that anything you really need you can get relatives and friends to bring as required.

    As somebody already said the hand held fan is a very good idea.

    So, if your experience is going to be like mine - then you have nothing to worry about.

    Good luck,


  • Hi Jim. Wow, 2 weeks on the waiting list!!! Can I ask if you were very poorly which is why you only had a two week wait before getting your call?

    I really hope and pray my operation goes as smoothly as yours and the recovery. I thought all the staff were lovely at Royal Free during my assessments.

    That is amazing to be able to complete a charity walk so soon after your operation. Well done you πŸ‘πŸ»

    I'll be sure to message you Jim about any questions I have about Royal Free if you don't mind.

    Sitting up at 11.45pm with no energy but roasting hot as usual and itchy. Your reply has really lifted my mood πŸ‘πŸ»

    Keep recovering well. Nicki πŸ’ž

  • Hello Nicki,

    Glad my reply gave you a good impression of the experience of having a liver transplant at the Royal Free.

    When I was recovering from my op I met somebody having their assessment for listing. He was successful. About a month later I was visiting him as he recovered from his transplant. He is now home and doing very well.

    As for why I only waited for two weeks ? I really don't know why the short wait, I don't know the criteria used for when you get a liver. I only know the criteria for listing, which you already know having been through the assessment

    Perhaps this is something you can ask tomorrow.

    You asked how ill I was prior to transplant. The short answer is very !

    Dr OBeirne wrote in my post assessment letter to my GP referred to there being only one moth when I wasn't admitted my hospitalised for a full month in the previous year. In total I spent 80 nights over the year in Whipps Cross hospital in London. I was admitted with a spontaneous bacterial peritonitis with resulting sepsis. After that most admissions were with Hepatic Encephalopathy. I even attended one of my Royal Free outpatient appointments with Professor Jalan via an ambulance from another hospital. He was the consultant who recommended me for the transplant pre-assessment.

    My next appointment is on the 6th September. After that I expect it to be three monthly or more as I'm pretty fit now. My GP has prescribed an assessment at a local gym followed by weekly sessions. So I'm really looking forward to that.

    Hope tomorrow goes well and you have your list of questions written down so you dont forget to ask.

    Take care,


  • Hi Nicki,

    Wishing you, all the best for a speedy and successful transplant. My husband had his liver transplant 4 weeks ago at QE Birmingham and is doing really well.

    We organised our arrangements for the children & packed similarly to you. However, all he mostly needed his wash kit and some loose pjs.

    He too was O + was listed early in Feb and after 2 'false alarms' had his op at the end of July.

    Wishing you all the best, let us know how you get on.

    H x

  • I read your post, can't offer you any advice other than to say I so hope everything works out for you xxxxx

  • Hi Nicki.

    Thankfully I don't have much experience of this myself (yet?!) but my mum is currently in hospital and has been in the past for various things and from what I see around her the handheld fan is an absolute essential as others have is the warm dressing gown to use as an additional blanket when needed. Otherwise just having family who'll ferry stuff you need back and forth is the key requirement. Best of luck. I hope it goes well for you. Adele

  • Hi thanks for getting back to me a while ago about what u have to go through for the listing I don't go on here to much at the moment so I've just read it I think I'll stay in a hotel like yourself I'm due to see them for the first meeting on the 29th of Sept just to see them I guess then take it from there thanks for being so in depth about the things you go through on the testing hope it all goes well for u bri

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