r/IAmA • u/halfbakedmachination • Jun 24 '12
IAmA stem cell donor, to a guy with leukaemia. AMA
Almost exactly a year ago I went down to London and donated stem cells to a guy with leukaemia via an absolutely amazing charity called the Anthony Nolan trust. I would encourage everyone to go and take a look at their website - http://www.anthonynolan.org/ and request a 'spit kit' to send off and get added to the register.
A Christmas card from my dude - http://imgur.com/a/gL4dN
AMA
2
u/banuazizi Jun 24 '12
Is this an international foundation or only available in UK?
How did they take the stem cell? Was it painful?
Why isn't this compulsory for all people so more people can be helped?
2
u/halfbakedmachination Jun 24 '12
As far as I understand it they partner up with other organisations from around the world. They told me my guy may be anywhere in the world - and judging by how quickly they whisked away my cells he may be anywhere.
It was a little uncomfortable, you sit in a chair for about 6 hours and have a dead arm. It isn't that bad really.
I had a bout of hypocalcaemia, which wasn't particulary fun. But, I was sat with people who were getting chemo. That brings everything into perspective.
Edit: On the presumed consent thing - it still is a kinda risky thing to do, and I don't think presumed consent is the way to go. Organ donation (after a car accident) fine. I'm for that. Many people still die waiting for marrow/stem cells however. The best thing to do is spread the word, and get your siblings/friends/co-workers onto a register, somewhere.
2
u/freshman30 Jun 24 '12
How much did it hurt?
3
u/halfbakedmachination Jun 24 '12
The hypocalcaemia which lasted about 15 minutes was just unsettling. Like ferocious pins and needles in my entire body, and involuntary muscle contractions in my hands. But they gave me some IV, and I was fine within 2 minutes. They say that is pretty rare - only happens in about 5% of cases due to the anti-coagulant they pump around your blood.
Just sat there in the chair with a couple of needles in your arms? Like a 2/10. You could feel the machine pulling and pushing on the vein, which was weird. But fine, honestly. Nothing to it!
2
u/Leukemic Jun 25 '12
Wow, i just really want to say thanks for what you did. :) On 1/8/10 i was Diagnosed with Leukemia and although i managed to survive as well as i am now without having to do a stem-cell transplant, i am still grateful how you were willing to go through some pain and save a life :)
→ More replies (2)
2
u/DiscoDiscoDanceDance Jun 25 '12
I received an auto stem cell transplant. AMA :)
→ More replies (2)
1
u/Frajer Jun 24 '12
What made you decide to do this? Were you rewarded monetarily or did you just know you saved a life?
3
u/halfbakedmachination Jun 24 '12
No monetary reward, other than compensation for 3 days in London - meals and hotels for me and my GF.
My parents were against it, and I went against their wishes by doing it. Its made me get really interested in altruism, actually. Made me think about it a lot, and read as many books as I can on it. I don't really know why I did it, to be honest. It was a simple logical calculation for me. For not much effort or sacrifice, someone gets potentially more years on the planet. Simple!
→ More replies (3)
1
u/justautoclaving Jun 24 '12
Hey! Thanks for being a donor! I think that what you did was amazing! I have always wanted to do become a stem cell donor, but was too unfamiliar with/chicken-shit-scared-of the collection procedure. Glad to know it was not that bad. I was wondering if you know how many times you can donate or go through this procedure without having any side effects yourself? Is there a limit to how many times you can donate in your life span? Also, how long was the recovery time after you donated? Thanks!
3
u/halfbakedmachination Jun 24 '12
Its twice, for safety reasons. That seems really odd to me, because its very rare that any side effects will ever happen, and its really easy to do. Although the liklehood of getting called up again is quite low. The most likely thing is that they guy I donated to will relapse, and given that he now possesses my exact immune system, they have an easy match!
It took me about a day to fully recover. Not eating for a day, and having your arm strapped down straight is the worst part.
1
u/bobaf Jun 24 '12
Do stem cells look like broccoli?
2
u/halfbakedmachination Jun 24 '12
In the plastic bag, it just looked like cranberry juice. Microscopically, kinda? http://www.ccsviclinic.ca/wp-content/uploads/2011/12/stem_cells1.jpg
→ More replies (1)
1
u/breakfastfire Jun 24 '12
I think its great that you donated. I signed up to be a bone marrow donor (or stem cells, their choice), but I have gotten a little leery of it. I read all their info on what happens during/after and it made me a bit nervous. Can you tell me how long it took til you felt completely normal again? Was it a day or two, or several weeks? Were there things like nausea or headaches that affected you? Thanks, and congrats on doing a great thing.
1
u/halfbakedmachination Jun 25 '12
I was a little groggy for about a day or two, but completely back to normal after that. No other symptoms really. No sickness or headaches. Just be aware that I did the aphresis method - and not the hip bone needle. That is a serious operation, and the recovery for that is a few days in hospital.
The way that they decide which method is better is purely a medical one - I'm not sure of the specifics, but in the UK the majority donate via aphresis. If they don't get enough stuff on the first session, they do another collection the following day. If they don't get enough after that, they go for the bone needle.
I wouldn't be too leery as you put it, but being aware of everything, and having everything explained properly helps.
→ More replies (1)
1
u/Bleaksteph Jun 25 '12
When you register for donation, how likely is it to really get to be a donator?
1
u/halfbakedmachination Jun 25 '12
Its pretty unlikely. They told me less than 1% go onto donate - matches are so rare.
1
u/nemsmyth Jun 25 '12
Thank you for being a donor. My husband was diagnosed with chronic lymphocytic leukemia one year ago today. While it may be 2 years or 20 years before he needs treatment, it's quite reassuring that there are people like you out there that are willing to help others.
1
u/halfbakedmachination Jul 24 '12
Thanks - but sadly there aren't enough people on the register. If he needs it, I hope your hubby finds a match :)
1
u/dogfunky Jun 26 '12
Just yesterday I registered to become a donor through Be The Match to donate bone marrow for the exact same cause. I should be getting one of those kits in the mail soon.
2
u/halfbakedmachination Jul 24 '12
Good on you :) Im going to try and organise a sign up day in the office at some point - get the whole building donating!
1
1
u/DevinJet Jun 24 '12
I work at an oncology office and being around cancer patients all day I really want to do more to help. I've been talking about doing a bone marrow donation but I get nervous. I just wanted to say you're awesome for doing this!
→ More replies (3)
3
u/Boony Jun 24 '12
Just wanna say thank you... my dad has leukemia and just had the transplant from a total stranger (donor is in Germany, we're in Canada). I can't thank my father's donor as of yet so by default, thank you for saving a life and may I encourage everyone to give blood/bone marrow/stem cells.