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PRE SCT TESTS

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had0171 Total Reaction Points: 3
Hi everyone.
I am due to go in for my SCT at the end of July - this was arrange with my consultant in Dec 2016 and I've seen him once since then in early June when it we confirmed this - but no set date was made.

We are now at the end of June - and I am getting twitchy. I know there are a number of tests I need to have done and so far I have only had a BM biopsy. I am definitely supposed to see a cardiologist due to a small hole in my heart. And then there is my sister who is my donor - she needs tests too and to be shown how to do the injections to get the stem cells into her blood etc. Neither of us have heard anything and no appointments have been made. And then there is work - they need to know when I'm off for tests and when my last day in the office will be.

So I just wanted to ask - is this normal? At what point did you all have your pre BMT tests done before admission into hospital?

I am seeing my consultant on Monday - and I don't want to go in nagging if this is perfectly normal and I should just be a bit patient.

I just want some set dates now it's getting so much closer. I suppose I have got myself so mentally prepared for the end of July it will be really annoying to extend beyond that.

Thank you!!!

Comments

  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 66
    Hi

    Thanks for posting on the forum, I am the nurse specialist in patient services. I think you are right to want to have a date for the transplant and there is nothing wrong with asking for one when you go on Monday. Its good to try and plan for the next few months, which you are trying to do and you need a timeline. Your sister needs this too so when you go take a list of questions for you both.
    Its completely ok to be involved with the plans and you should receive a schedule of when the tests pre transplant will be so please don't worry about asking. If the transplant is at the end of July then these tests should start soon anyway. You might find that when you get there on Monday they have it all ready to give to you anyway, but have your questions too.
    It might be useful to look at the seven steps which you can get from Bloodwise https://bloodwise.org.uk/sites/default/files/documents/Anthony_Nolan_Next_Steps_Digital.pdf
    its a great resource that will help prepare you for the transplant.

    Keep in touch when you have the transplant.

    Best wishes
    Hayley
  • had0171 Total Reaction Points: 3
    Thank you Hayley - that was really helpful!!!
  • greg777 Total Reaction Points: 62
    Hi Had0171,
    I was in the slightly unusual position that I chose to have my transplant and the hospital said they needed about a month's notice to arrange it, so around about now should be the time things get sorted out. I had all my tests about 2 weeks before admission, the same for my brother who was my donor. Hope this helps and very best wishes for the time ahead.
    Greg
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 254
    Hi there,

    Just to add to what Hayley and Greg have said I seem to remember having my tests about a month before my transplant. I had ultrasound on my heart to check that my heart valves were functioning well and to measure them, and was also due to have a lung function test, though that was never actually arranged. I seem to remember having a chest x-ray, a CT scan and an MRI too, though I had those a few times so I can't remember whether it was a prequel to the transplant.

    If it's some time since your last appointment make a note of the questions you want to ask and by all means make notes while you are there. It is worth knowing what tests you will have before transplant and also where and when they will be. They may not necessarily be at the same hospital as your transplant as my heart ultrasound was done at my local hospital in Northampton and the lung function would have been Glenfield Hospital in Leicester, even though my transplant was done at Leicester Royal Infirmary.

    Good luck and please let us know how you get on.

    Steve.
  • had0171 Total Reaction Points: 3
    Thank you everyone - that's been really helpful!
    My sister (my donor) has just text me to say she has been contacted by the donor team at Kings College Hospital - and she will be going in the next couple weeks for her bits...so that very reassuring!
    I just had fears of it being cancelled or postponed for months - I just want to get cracking on with it - silly fears though :-)
  • had0171 Total Reaction Points: 3
    I have been contacted by one of the transplant team nurses - and I have dates for tests and a provisional 'check in' date for hospital - all going well this is July 29th, with Aug 8th being the day I receive my sisters stem cells...happy days :-)

    Although relieved I have the dates now - it all seems very real now and rather terrifying but I am concentrating on the positives as much as I can. Thank you again everyone.
  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 254
    Stay with the positive vibes. I know it's daunting but you can and will get through this as some many of us here have done, and you should be no different.

    It's good that you now have a date and are clearer on what is happening, so now you can plan around your transplant and prepare yourself.

    Best wishes,

    Steve
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