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 💞