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NonprofitWe are three lifesaving unrelated Bone Marrow Donors AMA!

Jan 29th 2018 by LifesaverReady • 13 Questions • 80 Points

We are: Simon - In September 2013, I was working for a medical device company which actually sold the products used for the bone marrow procedure, and this inspired me to join the register. In early 2016, I was contacted as a potential match, I was the best match for my patient and went on to donate via the bone marrow method in May 2016.

Nick - I went to university in September 2014 to study biomedical sciences, and my brother told me to get involved with everything! So I discovered my University’s Marrow group – they signed me up to the register and really quickly I was identified as a potential match for a patient, by September 2015 I donated through the bloodstream method (also known as PBSC).

Katherine - I worked with someone who’s life was saved by a stem cell transplant, and she did loads of work to spread the word about joining the register in our office. So I signed up! That was in March 2013, and just six months later I was identified as a potential match for a patient and by March 2014 I was donating my bone marrow to a stranger.

Our proof: https://twitter.com/AnthonyNolan/status/957569026355597312

More proof: https://imgur.com/a/Hek6c

If you're interested in joining the register you can find out more at www.anthonynolan.org/join

EDIT:

Simon: Thanks for all the questions. I hope that people found it useful. One final plug from me - SIGN UP TODAY!

Katherine: Lovely to chat to you all... and thank you so much for all the questions. Please sign up... and get your friends to sign up. I promise you won't regret it :)

Nick: Thanks all! Great to hear all your questions. I'm off for a salad sandwich. Sign up please!!!

Anthony Nolan: Hope you enjoyed asking our amazing donors about their experience! If you'd like to find out more about joining the register, check out this link: www.anthonynolan.org/join

Q:

This is something I've always been curious about, I've always wanted to donate and help save a life, but I hate needles, especially big thick ones lol. What's the procedure like and how painful is it? And do they really drill into the bone?

A:

Simon & Katherine: We both donated via bone marrow harvest and neither of us found the procedure painful. You don't see the needles as it is under general anaesthetic and it's all over really quickly. Yes, they do go into the bone but it's not something you would be at all aware of happening. Simon likens to a bruise after playing football and that was about as bad as it got! :)


Q:

My procedure is scheduled for February 14th. I'll be donating to my Mother. She was diagnosed with leukemia just under a year ago. If I wasn't a match her chances would be significantly slimmer. You guys are heroes

A:

Katherine: That's great you're a match and really hope it all goes well on Valentine's Day!! You're doing a great thing :)


Q:

I believe the bloodstream method involves collecting stem cells that a pre-treatment stimulates the release of into circulating blood. See https://www.anthonynolan.org/8-ways-you-could-save-life/donate-your-stem-cells/you%E2%80%99re-match-what-happens-next

A:

Nick: They take the stem cells from your blood stream, through your arm/wrist rather than from your pelvis.

There's an animation of the different processes on this page here: https://www.anthonynolan.org/8-ways-you-could-save-life/donate-your-stem-cells


Q:

I know this might seem a silly question, but Simon & Katherine, when you donated, were you scared about being put under general anaesthetic? I've never been scared of the process, but my grandparents have concerns about the procedure.

A:

Katherine: I had never had a general anaesthetic before so I was a little bit nervous about that. The hospital were fantastic though, talking me through exactly what would happen at every step of the process. In the end it was incredibly quick and simple. I had some mild nausea after the op because of the anaesthetic but they gave me some anti-sickness tablets which worked immediately.

Simon: I'd had a few anaesthetics before so I wasn't nervous going in. The consultant asked me loads of questions to make sure I was happy to go ahead. Everybody in the hospital was fantastic and I felt really looked after.


Q:

I’m a haem-onc nurse in the UK and started administering stem cell transplants last year, such an overwhelming experience so I can’t imagine how you all feel; bravo! My question is, how often do you find yourselves thinking about your recipients? And if you could, would you like any updates or would you prefer to not know? Thanks guys

A:

Simon: I find myself thinking about them quite a lot. I guess I would want to know about them and I know that Anthony Nolan would give me updates if I asked for them. For me, I end up second guessing myself - what if its bad news? What if the recipient doesn't want me to know? I would say that I think everybody will think differently and I would always say to liaise with your contact at Anthony Nolan and they will help you.


Q:

Did you find you experienced any vivid dreams whilst donating or beforehand? Did it affect your sleep at all?

A:

Nick: I didn't experience any vivid dreams myself, and my sleep was unaffected - good news because I love sleep!


Q:

Yes would be my likely answer, but I think it is best not to downplay what's involved if you want potential donors to make honest informed decisions. The bone marrow method involves a general anaesthetic, a stay in hospital, and potentially a short time off work. Again, not something that would stop me if I was fit and healthy and had been properly briefed on the risk of any complications, but it is important that potential donors are aware of everything. I understand 90% of donors don't need to do the needle-bone-anaesthetic thing.

A:

Katherine: I do completely agree that it's a decision you should give a lot of thought to, and do your research... but I honestly would do it again in a heartbeat. It didn't feel like a big thing to go through at all.

Nick: I did a kind of cost-benefit analysis in my head. I'd happily trade a few hours of discomfort for the opportunity to give someone a second chance! It was a no-brainer in my head.


Q:

Honest answer, if presented with only those two choices, of course I would choose to help someone. However, I believe donors should not be pressured in any way or made to feel guilty if they choose not to donate for personal reasons.

A:

Simon: We just had a chat and none of us felt pressured at all. That's not something that the team at the register or the hospital do at all


Q:

Are you given a choice between PBSC and bone marrow harvest, or is that decision made based on other factors?

A:

Simon: see the link below as we answered this just before you got here....

https://www.reddit.com/r/IAmA/comments/7tstjh/we_are_three_lifesaving_unrelated_bone_marrow/dteyusb/?st=jd0epr69&sh=4e8f27a9

The guys with the numbers told us that 90% donate via PBSC and only 10% via bone marrow.


Q:

You are all massive heroes (a transplant from a no-longer anonymous donor saved my life). Do you know how many stem cells you donated?

A:

Simon: Interestingly we have just found out! I was 2.6 million :)

Nick: I gave 4.2 million stem cells, I was really bad at donating on the first day so had to come back on the second day to top it up (they put me up overnight in a hotel).

Katherine: I donated before records were digitalised so can't find out!!!


Q:

Were any of you under the false assumption that it would be a painful and dangerous procedure to donate marrow? I had believed this until my cousins son was diagnosed with severe aplastic anemia last year and needed a marrow transplant. I signed up (even though I wasn’t a match for my cousins son) because I felt it wasn’t right to ask for a donation if I wasn’t willing to do it myself only to find out it’s fairly painless and safe, and I should have signed up a long time ago.

A:

Katherine: I didn't think it was going to be painful and dangerous... but I definitely thought it would be more uncomfortable and unpleasant than it was. I was surprised at how easy / painless it was and how little discomfort I had. Great to hear that you've signed up :)


Q:

How much did any of you know about the science about matching stem cell donors to patients when you signed up? How much have you learnt about it since?

(Also, obligatory thank you for doing this - it is an amazing gift!)

A:

Nick: I signed up for the register as a university fresher studying biomedical sciences, so I had a general idea about it, but the Marrow group gave me an info pamphlet to teach me more. I feel familiar enough about the process now that I could put together my own pamphlet :)

Simon: Like Nick I had a fair knowledge from my degree and job but I leave the real specifics to the experts here at Anthony Nolan. I was told that it is generally rated out of 10 with a 10/10 being the ideal match.....here endeth my knowledge!

Katherine: I didn't really know anything about the science of the matching to be honest... and actually still don't really :-S ... now feeling like I may need to swot up on this :)


Q:

Do any of you know anyone who’s needed a bone marrow or stem cell transplant? What made you sign up in the first place?

A:

Nick: I don't know anyone that has needed a transplant. I signed up through my university's Marrow group, because I wanted to do something good, for someone that needed help :)

Katherine: A friend from work has had 2 bone marrow transplants and she was the one who made me aware of the register. She's got a blog which is well worth a look if you're interested to find out more...

https://emmafightsmds.wordpress.com/

Simon: I didn't know anybody personally but I had seen plenty of patients in my job. It was seeing them and hearing about something that I could do to be of some help that drove me to sign up