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A donors perspective

Hi all,
I'm not sure whether or not I can bring anything to this forum but I just thought I'd introduce myself.

I was a donor in 2008 and have since gone on to meet, and become friends with my recipient. I am also a volunteer with Anthony Nolan and get involved in as many things as my time will allow.

If anyone ever has any questions about the donation process from a donors perspective then please feel free to fire away.

Keep On Keeping On

Andy

Comments

  • Hello Andy
    I was really interested and pleased to read your discussion.
    I haven't yet reached the 2 year point of being a recipient but I often think about my Donor.

    I have been wondering about how appropriate it would be to make contact in the future.
    The Donor has done something special for me and I would like to communicate with him personally when the time is right, though I would always respect his wishes if did he didn't agree.
    We do communicate by letter via Anthony Nolan and of course we are still anonymous to each other at this stage.

    It would be just great to say a proper thank you and let him know what a wonderful selfless thing he has done.

    Cheers

    Peter
  • Hi,
    Good to hear that you are recovering post transplant.
    I can only speak for myself but I would imagine that if your donor has been happy to communicate via anonymous letter then they'll be only too happy and relieved to meet you when your two years is up.

    From a donors point of view, they'll be humbled that they were able to help by doing something so simple.

    Hope that's of some use. Anything else, feel free to ask away

    Andy
  • Hi,

    Thanks for that response it was really helpful.

    Couple of months or so to go yet so I'll see what develops.

    Will keep you posted and many thanks to you and everybody on the Anthony Nolan register who are willing to help people like myself.

    Cheers

    Peter
  • Good luck. No need to thank me. I was lucky enough to be in the right place at the right time.
    Donating is really easy. People just need a reason to join the register. For some it will be for personal reasons and for others it will be because they've been educated and had it all explained to them. Hopefully by one of our wonderful register and be a lifesaver presentations.

    Andy
  • Hi Andy,

    I disagree - every need to say thank you to anyone who has signed up to be a donor and then, like you, have actually become a donor.

    Someone just like you has saved my life.

    Can I ask a question?

    I had my STC May 2008 and did exchange an initial thank you card with my donor. I have only just found out that I could have carried on communicating with him but never mind.

    I would like to get in touch again but am worried that because I have had ongoing problems with GVHD it will be very disappointing to hear that although the cancer seems to being held at bay my quality of life isn't 100%.

    I am really grateful to him for his donation and would like to tell him so but is this just for my selfish benefit?

    What do you think?

    Jean
  • Thanks For the comments Jean. Sorry to hear about the GVHD.
    As for contact, I guess it really depends on your donors view of things.
    Personally I would be absolutely delighted to hear that your cancer has been defeated, despite the gvhd.

    Very early on in the process I told myself that whatever the outcome, I'd done all I could possibly do. If it had failed, I wasn't going to let myself feel guilty. On the other hand, if it worked, then I wasn't going to take the credit. I've said repeatedly that it is the process that saved my recipient's life. I was just part of the process.

    I hope that makes sense. If I was your donor I'd be thrilled to hear from you.

    Let me know if there's anything else I can tell you.

    Andy
  • V interesting. How do you go about contacting your donor? My husband (who is just a year post-transplant) would love to write. If someone could post a response that would be really helpful.
  • You can contact through Anthony Nolan. Anonymously until 2 years post, and then you can meet up if both parties would like to. I think I have that right, Amy, Annie?!
  • Hello
    Do contact Anthony Nolan, Amy or Annelese will put you in touch with Donor Wefare Section or speak to your transplant co ordinatior if you have one. I've always handed my letters to her and she forwards them to Anthony Nolan.
    I started off with a letter saying thank you and an update of progress. My donor replied and was genuinely pleased to hear from me, we have since exchanged a number of letters. The letters are annonymous for 2 years post transplant.

    In my last letter I asked him what he thought about me contacting him personally by any means, letter, email,phone call as the 2 year anniversary has just passed.

    Yesterday I was at my transplant clinic being checked over with a persistent cough and flu like symptoms and feeling pretty sorry for myself. I was given a letter from my donor which had just arrived. It really cheered me up as always.
    To give you an idea of its contents, he calls me an inspiration, he says I don't owe him anything, he says it was a pleasure to help and would love to get in contact and meet up. He says he sees me as a friend or distant family member.

    I' m sure a note to say thanks and an update would be well received, give it a go.

    Peter
  • We've recently updated our information about getting in touch with your donor on our web pages for patients: http://www.anthonynolan.org/blood-cancers-and-disorders/information-you-and-your-family/getting-touch-your-donor

    Hope it helps.

  • Yesterday I was sat waiting for a check up at my transplant clinic following a short admission last week.

    I got an email from Anthony Nolan giving me the identity do my stem cell donor, I was extremely pleased at last to have a name and means of contact and knew that my identity was being passed to him.

    I'm very grateful to Anthony Nolan for the part they have played and liaising with us both, their timing is amazing as always, twice before I have been passed letters from my donor whilst waiting anxiously in the out patient clinic.

    I contacted the donor by email and got a fantastic reply, he even sent a photo of himself in hospital at the time of the donation undergoing the process and proudly showing me his stem cells.

    I'm glad I made contact, he has clearly got a lot out of it himself and rightly feels proud of what he has done.

    Peter

  • Met my donor yesterday together with his parents, family and a friend who accompanied him to London for the donor process. We met at an hotel , it was a very friendly and relaxed meeting and not a bit emotionally charged as my wife and I were expecting.

    We had been in touch by email for a few weeks and I think this helped the process plus the relaxed surroundings, we had a lounge to ourselves and were able to talk freely. I really wanted to know what had made him join the register and what he had actually gone through in the process. He had been encourage by his grandmother when he was sixteen. She had seen a TV appeal for bone marrow for a very sick child.
    He described the process of donation and made light of it. He was full of praise for the care and attention he was given by staff from Anthony Nolan during the process. He was very pleased to have had that opportunity and to have helped a stranger and was rightly proud of himself as were his family.
    They were very interested in our side of the story. I was able to describe the ups and downs that I had never referred to in my letters to him.
    My donor and his family were really caring people, we all got on very well, we spent the afternoon and evening in their company.

    I am very pleased that I made the decision to meet him, it was something I wanted to do and had the support of my family. We will hopefully keep in touch from time to time and we can do this easily now by email.

    Peter

  • I'm glad things went well Peter. I wrote to my donor for the first time recently via my transplant nurse. I haven't heard anything back yet but it's early days so I still hope they will write in return. I do realise some donors might not want to get in touch but from my point of view I wanted to let my donor know that I was ok and thank them for their generosity.

    Steve
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