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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

Waiting for a donor

Hello all. Hope everyone is well!

At Anthony Nolan, we’re working on a new project to better understand how it feels when you are waiting to find out whether there is a matching donor for you.

Can you tell us about that time between when you heard that you would need a transplant and when a matching donor was found?

How did you feel during this time and how long did you expect it to take? Did you know how many donors were being tested for you?

Your experience is really important to us, so please feel free to comment on this post with anything you would like to share.

Your views will help us with an internal project which aims to improve the waiting times between needing a stem cell transplant and finding a match.

Thank you.

Best Wishes,
Clare
Patient and Family Engagement Coordinator

Best Answers

  • Hi Clare,

    I remember it being an anxious time waiting to hear whether there was a donor for me but other than the fact that the hospital were looking for a donor I didn't get much feedback at all on progress. I was told that a donor had been found about 8 weeks before my transplant and only 11 weeks after I'd first been admitted to hospital, so in my case a donor was found what I think to be fairly quickly.

    Up until that point my sister had been tested to see whether she was a match, but proved not to be a suitable match. That was disappointing but I was quickly reassured by my medical team that the tests my sister had been having were in parallel with the databases being searched for a match, and they were confident that one could be found.

    I remember that when I was told a match had been found it was a big relief, but its also made me incredibly nervous as it now meant that I was going to have the transplant and at the time that seemed really daunting.

    I've re-read the blog entry that I wrote the day after I was told a donor had been found, and even at that time the timescales were fairly clear about what would happen when. This was the end of November, and I was told that my transplant would be early in the new year (I had it on the 10th January). I also wrote that I'd been told that it could mean a stay in hospital of up to 2 or 3 months whilst the graft occurred, but in the event I was only in hospital for 3 weeks after the transplant.

    I was never told anything about my donor, about how many potential matches had been found, where they were located, male or female, age, or any other details. I'd still love to know more about them if it were possible, but I totally respect their wishes for anonymity.

    I'm interested to hear others experiences, particularly from those who had a long wait for a donor. In my case I guess I was lucky as I'm not from an unusual, mixed or minority background and had a common blood group, but I know that's not the case for others and that some can wait a painfully long time for a donor to be found. I can imagine that must be really stressful.

    I hope this helps and look forward to reading about other peoples experiences.

    Regards,

    Steve

    Clare_AtAnthonyNolan
  • Answer ✓

    Hi, Clare, my son was told he would need a transplant on 30th October 2018. He has three siblings so they were tested, but were not matches. I think that by mid November we knew that there were a number of potential unrelated matches, and that some would be screened. We didn't get any updates but as the hospital was talking about admission in mid February so we sort of gathered that they must have someone lined up. In mid January we had a letter from the hospital with a date for admission, so that was exciting, but when we asked the CNS she said she had to book the hospital bed before she had final confirmation, so we still felt a bit deflated. A week or so later we heard that a German donor was happy to donate marrow - that was a real boost. In fact things were delayed by a couple of weeks to early March which felt like tightrope-walking at the time. The lovely donor then gave a top up of stem cells in June. Very grateful to him.

    Dieseldrinker62Clare_AtAnthonyNolan

Answers

  • Hello Steve and MotherAA,

    Hope you are both doing well.

    Thank you both so much for sharing your experiences.

    You have both shared some really interesting and insightful points for consideration.
    I have passed them on to my colleague leading this project in Anthony Nolan's Donor and Transplantation Department.

    Really appreciate your replies and honesty!

    Best wishes,
    Clare

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