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Is this normal?

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Mrsb83 Total Reaction Points: 2
I'm now day +16 post transplant and am feeling a bit worried, im doing very well having got my apetite back, I am able to do things in the day and my energy levels are fairly normal and if I'm honest I feel really well. I am being cautious with hygiene and setting up good routines and am remaining in the house until my counts improve further.
I am worried because I can't quite believe that it is possible to feel this good having done so much research before as to what to expect and having been given info from the specialist nurses etc... I feel like it's too good to be true and am on borrowed time before something happens, I'm normally quite positive and embrace every good day without worrying about what may never happen but this is bothering me and I don't know why.
I feel guilty for even writing this when I know that so many people do feel unwell after their SCT.
I am wondering if anyone else has had a similar experience?

Answers

  • greg777 Total Reaction Points: 59
    Hi Mrsb,
    I am not sure there is any "normal" in an SCT process. However, it's great news that you are having a good time of it and you should definitely celebrate that. It is still likely to be a long road ahead and as many people say it can be like a rollercoaster with lots of ups and downs, so please continue to take it easy and look after yourself.
    I have had two transplants and on both the transplant itself was pretty ok for me. I was out on Day 12 with the auto, Day 13 with the allo. With the auto I continued to sail through, but with the allo I got hit with GvHD around Day 50 which knocked me off my feet. Everyone is different in their reactions but you should take great comfort in the fact you are doing so well - I would still encourage taking things slowly and carefully as I have learned recovery can be a long road.
    But well done so far and long may it continue!
    All the best,
    Greg
  • Mrsb83 Total Reaction Points: 2
    Thank you Greg, I think my worry could be trepidation about what lies ahead, I had a donor transplant so know that GVHD is likely but it's the not knowing and lack of certainty as I am probably a bit of a control freak and like to plan. I will take it easy, have got the time to recover thankfully.
    I just need to enjoy each day I feel good and take it as it comes, it is great to be through the chemo and I feel so close to the end of this... but there's still a way to go.
    Thank you
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 241
    Hi,

    As Greg says we are all unique and react to our transplants in different ways. Some will find it straightforward and recover quickly whilst others will struggle and have difficulties.

    Hopefully things will continue to go smoothly and you will recover without any complications, but don't get too hung up on any setbacks that might occur. Try not to get complacent either or ease up on being cautious about protection from infection. Your immune system will still be developing and you must be cautious for a long time yet.

    You're obviously staying positive and I think that's part of the key to recovering, and if you get any hiccups in your recovery try and stay that way.

    GvHD is not guaranteed to happen but is a real possibility we must all face with donor transplants, but it's not the end of the world if you get it as it can usually be controlled and treated. Remember also that if GvHD does occur that it is a good sign that it will also be working against your original disease and keeping that away.

    Keep watching your counts climb and enjoy life as you've been given a new start. Celebrate every milestone and enjoy your recovery. Please keep us updated.

    All the best,

    Steve
  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 57
    Hi
    I am the nurse specialist in patient services. Thanks for posting, its very early days at the moment and to be honest D16 can be a bit early to have some of the side effects like fatigue, GvHD etc. The main risk at the moment is infection and side effects of chemotherapy like nausea and diarrhoea. It is great that you feel so well and that may continue. While you feel like this make sure you eat and incorporate some exercise in to your day. Nothing to much, walking would be good but don't over do it. This will better prepare you if you do experience any side effects later on.

    Please don't feel guilty, everybody has their own experience after a transplant and some are easier than others. It can be hard feeling like you are waiting for something to happen and unfortunately know one can predict if you will get any of the side effects. If you focus on looking after yourself by maintaining your diet and exercising this can be a way of regaining some control too. Hopefully you will continue making good progress but take it one day at a time.

    Keep in touch
    Hayley
  • Mrsb83 Total Reaction Points: 2
    Thank our for the advice, I have settled into a routine now and getting out for a walk daily as well as doing jobs in the house and being active. Trying to get out of the habit of napping in the day as I wake up in the night but otherwise doing well and bloods are improving which is reassuring. I know they will fluctuate but as long as it's the right direction over time.
    My Hickman line is coming out tomorrow, bit nervous as I don't like the thought of it but will be glad when it's over and it's a good sign that I can start putting some of this behind me.
    I know I should avoid gardening, how long roughly is it before I can get into the garden again.
    Many thanks,
  • Rachelj01 Total Reaction Points: 16
    Hi MrsB83

    Congrats on feeling well & I hope you continue to gain strength. I feel many people have addressed the GvHD & how we all react differently.

    I really just wanted to wish you well with thecremoval of the Hickman Line. I was SO happy to have my mine, like you I was nervous but compared to many procedures you will have already endured it's really very minor. I hope you enjoy having a bath or shower once the wound has healed, for me it was a very important moment. Another step in having control.

    As for the gardening, I do believe the advise it to avoid it until you have had your tetanus & when you can have that varies depending on the regime your hospital advise.

    Best of luck

    Rachel
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