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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Hi!

This is all a bit new to me.. I don't even 'do' Facebook! After a few weeks of pondering I've taken the plunge and here I am! I'm currently waiting for a transplant, I'm on the waiting list and in the middle of a thousand and one questions flying around my head - reading other people's experiences on here is really helping when I don't want to bore my family with endless what, whys and where's! So thank you x

Comments

  • Hi LolaB and welcome to the forum. There are some amazing people on here that will help you and we, at Anthony Nolan, are here for you every step of the way.
  • Hi LolaB

    Welcome to the Forum and pleased that you are finding it useful.

    I had a transplant 3 years ago now and it is a major event and lengthy recovery but worth it in the long run. I had no idea I had a blood disorder, MDS, it was picked up in routine blood tests. I was working and winding down to retirement, enjoying life to the full with a grown up family and grandchildren to keep us busy.

    The diagnosis was a shock, as was being told a transplant was the only cure. There were so many questions we had and decisions to make it was a difficult time. My family were a great support. There are lots of members here who can share their experiences with you, so please keep in touch if you need a chat or a bit of support. Anthony Nolan are a great source of support too.

    Best wishes, Peter.

  • Thank you both for taking the time to post, I really appreciate it. I've found it really useful so far to be able to read all the things I haven't even thought of, I was diagnosed (also a shock as I didn't feel ill at all!) with AA & PNH nearly 8 years ago so a transplant has always been something that could but probably wouldn't happen, but things have changed now and it all feels a bit surreal at the moment.

    It's good to hear you feel it has been worth it -,can I ask how long you think it was before you felt reasonably 'normal' afterwards? do you still feel some effects now? I'm still working but vastly reduced hours and I've had to change my job responsibilities as I was struggling to keep up, which has been frustrating as I love my job.

    My husband has been amazing as have my parents and brother, I just worry about bothering them with all the small stuff and that days burning issue, they are great I just feel so guilty they are having to deal with this too.

    So many questions I don't know where to start!
  • Hi LolaB and welcome to the forum. It's great that you've plucked up the courage to post and I'm sure you'll find lots of welcome support. It is a really useful place and there are members at all stages of the transplant process. It's about two and a half years since mine to treat ALL.

    There's no denying it is a tough process to go through and it does take a long time for things to return to 'normal'. For me I was feeling close to recovered from the main effects about 6 months after my transplant, but I was by no means as fit as I had been before and was still regaining my strength. It was at about that point that I went back to work.

    Hopefully your employer will be flexible around your work and there may be other ways for you to work differently, depending on your job. It will involve minimising exposure to lots of people initially, so I don't know whether working from home is an option for you?

    Please stick around and ask what you need of us. We're here to help and back up the great support you are already getting from your family.

    Good luck,

    Steve
  • Thank you, it's great to hear from people who have been there. Unfortunately I work very close to people and can't work from home, but my employer so far has been great... I've stepped back from full time working close up and am doing admin a couple of days a week instead so not 'up close' to people anymore, as I was getting too many infections and getting too tired- so potentially I could go back doing that when the time comes. Thank you for sharing your experience.
  • Hi

    I had my transplant 3 years ago, you ask a huge question about how long after transplant you feel normal.
    I'm sure it varies from person to person and age. I was 63 when I had transplant my medical team told me from the outset recovery would be slow and could take 12 months. We prepared ourselves as best we could but I had a major set back with pneumonia 3 months after transplant which slowed recovery down. There have been other infections which I picked up mostly colds and flu the source was usually the younger grandchildren, we had to be vigilant when they had sniffles.

    My transplant centre at The Christie have a hotline number we can contact 24/7 even now for advice or any sign of temperature, we get advice over the phone or get asked to go in for a check up. I'm pleased to say when we have made use of this the problem has always been dealt with promptly and they always have a solution.

    Please remember we are all different and you will see that Steve's recovery was quicker than mine.
    I took the decision to retire before transplant. We are so busy now, we walk twice a week with a Macmillan walking group, look after grandchildren and have pretty well resumed a full social life.
    Patience is the big thing, you will be fine.
    Peter
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