It looks like you're new here. If you want to get involved, click one of these buttons!

Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

Please read the house rules and keep this community safe for yourself and others.

Transplant Nerves

Hi, just wondering how everyone coped/felt in the last couple of weeks pre transplant? I'm 3 weeks away now. Partly excited that it could (sorry WILL) be an end to all this and partly scared of the process, after effects and result.

Would be good to know I'm not unusual feeling like this and any advice on getting through the next few weeks and what to take to hospital appreciated!



  • Hi Josie.

    I'm sure everyone here was every bit as nervous as you are feeling.

    My transplant followed three months of chemotherapy which had left me feeling really weak and totally unprepared for the transplant. I felt like I wouldn't get through it as I felt like I didn't have the strength I needed.

    Thankfully I did get through it, but put that down to staying positive about the outcome. You must do the same and always remember that you need the transplant to make you better. Set yourself little goals along the way to give you a target to reach, and celebrate when you achieve them.

    Good luck and please keep us posted.

  • Hi
    You are normal if you feel nervous and excited, it would be easy for me to say keep calm now 3 years down the line, but do try and stay positive. I finished work 2 weeks before transplant and was able to retire at the same time. My wife and I went away up to Cumbria for a few days to chill. When we got back time seemed to pass very quickly before admission day.

    I had a root canal issue with a front upper tooth, this had to be dealt with in the week before admission by way of extraction,something I could have done without, because of low platelets that had to be an overnight stay. We had a couple of days out with grandchildren and a family get together and meal. We tried to keep occupied which helped.

    I took an MP3 player, books(they had to be new), obviously a phone, I ruined mine by spilling water on it. One of my children replaced it with a basic job. My children urged me to get an IPad, I couldn't see the point I had a lap top, which I didn't take. When I started to get better my children again encouraged me to update and I got a pad and pod, best thing I ever did, I'm lost without them. Sweets and chocs even if you don't feel like eating them the staff will help you out. I had photos pinned up and get well cards as they arrived.

    You will be fine, one of my sons used to tell me to 'take the pills and do the drills' nothing else matters but getting better.

    Best wishes, keep us updated, if we can help and support you we will.

  • Firstly good luck. I found with mine my iPad was a lifesaver as it kept me in contact with everyone and injected a bit of normality. I took DVDs and books and never looked at them once. I subscribed to audible and had loads of audio books which were really good. My room had a small fridge freezer so everyone brought in lolly ices and ice pops which were great when my mouth was sore or when I didn't feel hungry. I found just little home comforts worked, pillow spray helped me sleep and take an eye mask and ear plugs.

    I had my transplant in Liverpool and went to the unit just before I was due in to meet everyone and look round that helped too.

    Let us know how you get on. Good luck.

  • They are good tips from Jon, I had forgotten the ice pops they really do help if you have a sore mouth. The nursing assistants also used to make up milkshakes with ice cream in them and did the same with Complan, the nutrition drink if you lose your appetite.

    I too lost the will to read and watch TV, I had a newspaper delivered every day and just got through the first page, it was always there for visitors if you didn't feel like talking.

    I have spoken to patients waiting for transplant day via transplant staff and they have said it was helpful, one chap I spoke to was worried about the pain associated with the transplant procedure, I was able to put his mind at rest. There is no pain with the actual transplant. Lost of feelings of being unwell and maybe sickness and fatigue, but all these things are managed by experienced medical staff.

    Try not to worry, not everything you may have heard or read about will necessarily affect you.

    Best wishes, Peter
  • Hi Josie, I came on here to ask pretty much the same question! My transplant will be a few weeks after yours but I'm finding I too am partly excited (which feels weird!) and partly scared, I do also feel strangely calm about it - I've been told I look serene!

    A friend bought me a 'list' book which I'm noting down everything I can think off - from what to take in clothes wise, toiletries etc, to things I need to do beforehand, partly to prepare me and partly to keep me occupied. I'm thinking to take my kindle, iPad (I've subscribed to one of the monthly film clubs too) iPhone and try my hand at the adult colouring craze maybe for days when I'm feeling stronger.

    At the moment I'm concentrating on doing nice things like catching up with friends & family having good times, and having a good clear out at home so I don't return to too much chaos! It's all just distraction stuff I guess
  • Thanks all, great tips. I think I'm struggling because I'm still an in patient at Worcester as I'm neutropenic. They are letting me out during the day but I just want to be at home, tucking my kids into bed and doing all those little jobs to feel like I've got things organised before I go in. Even though the transplant team have said I'll only be in 3 weeks (significantly shorter than the 14 weeks I've spent in Worcester so far) I know I wont be as fit and active afterwards and as the transplant has been bought forward I feel desperate to spend time with family etc before hand. Think I'm just a big old mix of emotions at the mo, excited one moment then feeling angry and upset that I'm missing the summer hols with my kids the next.
  • Hi Josie – I just replied to your other thread, before reading this one! All the best to you, and Lola, for your upcoming transplants.

    Personally, I made sure my transplant day (Day Zero, my 'second birthday) was a celebration, so my wife and dad brought in balloons, party hats and fizzy cordial... It definitely helped me to see the transplant as a wonderful, positive opportunity worth celebrating.

    All the tips the others have given are great. Good luck to you both :-)
  • Hi Josie

    Good luck and best wishes from me too for the transplant which sounds like it may be soon.

  • Hi LolaB

    Sounds like you are doing all the right things at the moment, good luck and best wishes to you also.

    Don't forget to keep us updated.

  • A week today until I go in Peter, transplant in the 18th. Having a lovely week spoiling my kids and spending time with family, like you Lola I'm also trying to get the house in order so I don't come back to chaos (while also trying not to over do it!) I'm sure I won't be completely useless and I'm taking my laptop etc with me but I just want to make sure finances etc in order for hubby before I go in. Plus my daughter starts school in September so I'm madly buying and labelling school uniform so it's all done for her! A real mum thing, I need to do it myself!
  • Good luck from me too Josie.

    Great that you're taking your laptop. I had mine all the time I was in hospital and it was really useful for keeping up with the outside world when you get bored with TV. Make sure you've got plenty of music on there and maybe some movies (or DVD's if it has a drive). I kept people posted with my progress through Facebook and wrote a blog for people to follow which saved my wife updating people constantly.

    I hope you'll keep us updated here too. This forum wasn't around when I had my transplant in January 2013 but I know I'd have found it useful.

    Fingers crossed for you and all the best,

  • Hi Josie, just wanted to wish you all the best for next week, good luck x
Sign In or Register to comment.