The writing in this piece is a bit over-wrought (funnily enough, I don't mind that so much now that it makes me think it was written by a real person and not an AI), but it's still worth reading.
Donating blood marrow (or stem cells) is the easiest way you could ever save a life. I encourage everyone to sign up:
This story involved stem cells, but for those of you who might worry about the bone marrow extraction procedure, which is reputed to be painful, I've had one - a biopsy for a medical diagnosis, not (alas) a donation - and it's not so bad. A bit uncomfortable, but I'd choose one any time over (say) stubbing my toe. It's really nothing to worry about.
AFAIK the bone marrow based procedure requires general anesthesia, with all the risks it entails. Most registries I've seen discourage signing up unless you're willing to do both donations (which I don't quite understand), and this still hasn't changed.
Anyway, my experience was 20+ years ago, so maybe something's changed. I did specifically ask the doctor if this was the same thing they'd do if I was donating marrow and she said 'yes'. My uncle was deeply involved in one of the US marrow-donation registries at the time, and donation shyness has always been a top concern, so I really wanted to be able to give a field report, as it were.
It was in the UK, where (in my experience) they're less likely to offer aenesthesia / sedation than in the US. (I'll tell y'all a funny / embarrassing story to do with that, if anyone asks.)
Maybe enough people were rejecting the marrow donation out of fear of pain that they started offering it? Or maybe the extraction procedure is more invasive in the US than in the UK? Or maybe that doctor was just wrong? We need someone who knows more than I do to settle this!
Yes, I saw this both on the German registry (that lists general anesthesia as the only option for the marrow collection, but 90% of donations are supposed to be stem cell donations from blood) and some English-language one (I think from the UK) and just double-checked the German one. https://www.nmdp.org/get-involved/join-the-registry/donate-b... says 96% of bone marrow donors get general anesthesia.
Both sites I saw also stated that you should only sign up if you're willing to do both, which given the "90% donate stem cells only" number seems extremely odd (I'm sure there are many people willing to donate stem cells while being unwilling to undergo general anesthesia).
Interesting. I'm leaning towards either "doctor was wrong" or "practice has changed". If the latter, then probably to convince more people to go ahead with the procedure.
Certainly 20+ years ago people did refuse un-sedated marrow donations - it was a big problem, with some really sad-story consequences. The pitch at the time was that the level of pain with a donation was equivalent to falling and bruising your tailbone (accurate to my experience), but some people aren't willing to accept (what seems to me to be minimal) personal discomfort in trade for another's life. That makes me sad.
If I were to be lucky enough to be a match I'd also be more concerned about the risk (to me!) of general aenesthesia, than dealing with some minor pain, and elect to do it without.
I agree with you about the "both" requirement, which seems counterproductive. I don't think stem cell donation had even been considered, far less become possible, back when I was more (by proxy) involved in the space.
I donated bone marrow about 10 years ago. It was an exhausting process, though no worse than dealing with a bad cold. After about two years (if I remember correctly), we exchanged details through the organization that facilitates these donations. However, the recipient never reached out to me. Out of curiosity, I googled the person and discovered this person was apparently a neo-nazi (at least very very right leaning) from East Germany.
As someone who has been trained in CPR, looking into the patient world views before deciding to help is not good. Trying to weight if a human life is worth saving generally only leads to a very dark place that only game theory scientists and philosophers should do.
Thankfully in EU we have laws against this in terms of human rights. Doctors can not refuse to provide medical help to anyone regardless of patients world views. Far leaning left, far leaning right, women, men, color of skin and so on. If blood or organ donations would start to allow discrimination based on world views then such restrictions would be struck down in courts, based on the same principles that is behind the opposition to Neo-nazism.
Imagine donating to a neo-Nazi while a good person you could have donated to wither and dies. Fuck this, your body your choice. We should get to choose, and if we can’t, then I can see why someone would choose to not donate at all.
I fully understand that not everyone agree with the EU human rights that define world views as equally protected as religious beliefs, but the core concept is that every human being is worth the same as humans regardless of what that person believe in, be that a religious text, a shaman, a political view, or just random thoughts they gotten. The medical system especially do not decide which life is worth saving by looking at what the patient believes in which is something everyone benefits from.
Naturally people who do not accept that do not need to donate, but don't expect the medical system to change in order to get more donations. The chaos it would cause would cost more life than it would save, and it would send a very wrong signal to the rest of society.
Why the assumption that every human is worth the same as any other human? Some humans are truly human garbage. Is a mass murderer worth the same as a doctor?
These questions were argued at length since time immemorial, and we have in modern times reached some sort of conclusion, most famously defined in the UN Universal Declaration of Human Rights and the United States Declaration of Independence.
If you want to reject those documents (and more), that is your choice. But if you want to argue against them, you will have to do better than that.
People are more than just their shitty viewpoints. The world is a chaos system. This person might go on to develop some incredible medical procedure, or write some new useful kernel code. They might have a child who is disgusted by their parent's worldview and starts a revolution of universal brotherhood.
Or the person might just be worthless. C'est la vie.
Definitely agree with you on this. It was a bit disappointing when I found out. As for bone marrow, I’ve got plenty to give, but in the 18 years I’ve been registered, I’ve only been contacted twice. One of those times, if I recall correctly, they said I wasn’t a good enough match.
The ethics of organ distribution usually do not look into the worthiness of the person needing the organ, but rather the effectiveness of the procedure. If the medical intervention is unlikely to be effective, the limited medical resources is better to be allocated elsewhere. Behavior and access to social support can be part of the assessment of how effective the procedure will be, but it doesn't weight the social worthiness of the patient.
This principle is similar to why palliative care is different from medical care. At some point the effectiveness of health care is so low that it mostly do more harm or drain resources better allocated to other patients. It is not that elderly people are not worthy of health care, and the ethical considerations focus on making sure its not a value based judgement about who should live and who shouldn't.
I first read this as you being the recipient of the bone marrow, and thought "that makes sense, for a hardcore ethno-nationalist to save the life of someone with whom he has a high genetic compatibility".
Very good of you to do it anyway. I bet he doesn't resent that the tissue comes from someone who doesn't share his worldview.
One of my coworkers recently shared her personal experience with stem cell donation and I thought it was worth highlighting. It's a great read and may even inspire you to consider donation yourself. You can read it here: https://www.pearlleff.com/stem-cell-donation
Looks like a kind of make up story. Or Christmas feel good usual CNN bullshit.
So it is just a friend that met another friend in an airport stopover. Nothing heal related to this encounter. Nothing urgent. And they know each other for years and met also...
It's a cool story and all but did he really need to stop her plane leaving on time and rush over the airport to meet up with her? I mean, they'd met, she was on his frequent flyers account, probably could have just send an email "hey, we were passing by just the other day and I thought of you, want to catch up?" Does she otherwise have to worry that every time she flies someone will stop her travel to recount the story yet again to a bunch of strangers?
> Does she otherwise have to worry that every time she flies someone will stop her travel to recount the story yet again to a bunch of strangers?
Sounds like it:
>> Owing to account notifications, David from time to time surprises Allie at an airport where they both happen to be, he said.
You know, this could make a decent setup for a Brian de Palma thriller: an attractive young cancer researcher volunteers to save the life of a dashing older pilot; in return, he helps her out by offering to add her to his flight benefits. Naïvely, she accepts — but then he keeps on showing up to her flights. Then he starts appearing at a conference presentation. Then at her lab. Then her home. He won’t take ‘you’re welcome’ for an answer.
The writing in this piece is a bit over-wrought (funnily enough, I don't mind that so much now that it makes me think it was written by a real person and not an AI), but it's still worth reading.
Donating blood marrow (or stem cells) is the easiest way you could ever save a life. I encourage everyone to sign up:
US - https://www.nmdp.org/get-involved/join-the-registry
UK - https://www.anthonynolan.org/help-save-a-life/join-stem-cell...
This story involved stem cells, but for those of you who might worry about the bone marrow extraction procedure, which is reputed to be painful, I've had one - a biopsy for a medical diagnosis, not (alas) a donation - and it's not so bad. A bit uncomfortable, but I'd choose one any time over (say) stubbing my toe. It's really nothing to worry about.
> We’re sorry, you’re unable to join our register as you must be aged between 16 and 30.
Boo. Although apparently https://www.dkms.org.uk/ will take people up to 55.
AFAIK the bone marrow based procedure requires general anesthesia, with all the risks it entails. Most registries I've seen discourage signing up unless you're willing to do both donations (which I don't quite understand), and this still hasn't changed.
Huh! You're sure it's general, not just sedation?
Anyway, my experience was 20+ years ago, so maybe something's changed. I did specifically ask the doctor if this was the same thing they'd do if I was donating marrow and she said 'yes'. My uncle was deeply involved in one of the US marrow-donation registries at the time, and donation shyness has always been a top concern, so I really wanted to be able to give a field report, as it were.
It was in the UK, where (in my experience) they're less likely to offer aenesthesia / sedation than in the US. (I'll tell y'all a funny / embarrassing story to do with that, if anyone asks.)
Maybe enough people were rejecting the marrow donation out of fear of pain that they started offering it? Or maybe the extraction procedure is more invasive in the US than in the UK? Or maybe that doctor was just wrong? We need someone who knows more than I do to settle this!
Yes, I saw this both on the German registry (that lists general anesthesia as the only option for the marrow collection, but 90% of donations are supposed to be stem cell donations from blood) and some English-language one (I think from the UK) and just double-checked the German one. https://www.nmdp.org/get-involved/join-the-registry/donate-b... says 96% of bone marrow donors get general anesthesia.
Both sites I saw also stated that you should only sign up if you're willing to do both, which given the "90% donate stem cells only" number seems extremely odd (I'm sure there are many people willing to donate stem cells while being unwilling to undergo general anesthesia).
Interesting. I'm leaning towards either "doctor was wrong" or "practice has changed". If the latter, then probably to convince more people to go ahead with the procedure.
Certainly 20+ years ago people did refuse un-sedated marrow donations - it was a big problem, with some really sad-story consequences. The pitch at the time was that the level of pain with a donation was equivalent to falling and bruising your tailbone (accurate to my experience), but some people aren't willing to accept (what seems to me to be minimal) personal discomfort in trade for another's life. That makes me sad.
If I were to be lucky enough to be a match I'd also be more concerned about the risk (to me!) of general aenesthesia, than dealing with some minor pain, and elect to do it without.
I agree with you about the "both" requirement, which seems counterproductive. I don't think stem cell donation had even been considered, far less become possible, back when I was more (by proxy) involved in the space.
NL - https://www.matchis.nl/
NO – https://www.helsenorge.no/bli-blodgiver/
That is for blood donation. See https://www.oslo-universitetssykehus.no/fag-og-forskning/nas... for bone marrow.
I misread and thought blood donations was the topic of this string of comments. Sorry, and thanks for the correction.
I donated bone marrow about 10 years ago. It was an exhausting process, though no worse than dealing with a bad cold. After about two years (if I remember correctly), we exchanged details through the organization that facilitates these donations. However, the recipient never reached out to me. Out of curiosity, I googled the person and discovered this person was apparently a neo-nazi (at least very very right leaning) from East Germany.
As someone who has been trained in CPR, looking into the patient world views before deciding to help is not good. Trying to weight if a human life is worth saving generally only leads to a very dark place that only game theory scientists and philosophers should do.
Thankfully in EU we have laws against this in terms of human rights. Doctors can not refuse to provide medical help to anyone regardless of patients world views. Far leaning left, far leaning right, women, men, color of skin and so on. If blood or organ donations would start to allow discrimination based on world views then such restrictions would be struck down in courts, based on the same principles that is behind the opposition to Neo-nazism.
Imagine donating to a neo-Nazi while a good person you could have donated to wither and dies. Fuck this, your body your choice. We should get to choose, and if we can’t, then I can see why someone would choose to not donate at all.
I fully understand that not everyone agree with the EU human rights that define world views as equally protected as religious beliefs, but the core concept is that every human being is worth the same as humans regardless of what that person believe in, be that a religious text, a shaman, a political view, or just random thoughts they gotten. The medical system especially do not decide which life is worth saving by looking at what the patient believes in which is something everyone benefits from.
Naturally people who do not accept that do not need to donate, but don't expect the medical system to change in order to get more donations. The chaos it would cause would cost more life than it would save, and it would send a very wrong signal to the rest of society.
Why the assumption that every human is worth the same as any other human? Some humans are truly human garbage. Is a mass murderer worth the same as a doctor?
These questions were argued at length since time immemorial, and we have in modern times reached some sort of conclusion, most famously defined in the UN Universal Declaration of Human Rights and the United States Declaration of Independence.
If you want to reject those documents (and more), that is your choice. But if you want to argue against them, you will have to do better than that.
People are more than just their shitty viewpoints. The world is a chaos system. This person might go on to develop some incredible medical procedure, or write some new useful kernel code. They might have a child who is disgusted by their parent's worldview and starts a revolution of universal brotherhood.
Or the person might just be worthless. C'est la vie.
That’s fine, then you do not donate.
What is then better, ethically speaking: donating at the risk of donating to a psychopath, or not donating at all?
But it still is and should remain your choice to donate or not.
[dead]
Definitely agree with you on this. It was a bit disappointing when I found out. As for bone marrow, I’ve got plenty to give, but in the 18 years I’ve been registered, I’ve only been contacted twice. One of those times, if I recall correctly, they said I wasn’t a good enough match.
The ethics of organ distribution is complex, and I wouldn't want to be on the committee deciding who is worthy and who is not.
https://en.wikipedia.org/wiki/Ethics_of_organ_transplantatio...
https://optn.transplant.hrsa.gov/professionals/by-topic/ethi...
The ethics of organ distribution usually do not look into the worthiness of the person needing the organ, but rather the effectiveness of the procedure. If the medical intervention is unlikely to be effective, the limited medical resources is better to be allocated elsewhere. Behavior and access to social support can be part of the assessment of how effective the procedure will be, but it doesn't weight the social worthiness of the patient.
This principle is similar to why palliative care is different from medical care. At some point the effectiveness of health care is so low that it mostly do more harm or drain resources better allocated to other patients. It is not that elderly people are not worthy of health care, and the ethical considerations focus on making sure its not a value based judgement about who should live and who shouldn't.
I hope that your gift of life to him will one day make him realize life is too fleeting to be expend it on such a hateful ideology.
I first read this as you being the recipient of the bone marrow, and thought "that makes sense, for a hardcore ethno-nationalist to save the life of someone with whom he has a high genetic compatibility".
Very good of you to do it anyway. I bet he doesn't resent that the tissue comes from someone who doesn't share his worldview.
If you seek contact simply fly from Berlin airports, the recipient will search and frisk you.
One of my coworkers recently shared her personal experience with stem cell donation and I thought it was worth highlighting. It's a great read and may even inspire you to consider donation yourself. You can read it here: https://www.pearlleff.com/stem-cell-donation
[flagged]
Looks like a kind of make up story. Or Christmas feel good usual CNN bullshit.
So it is just a friend that met another friend in an airport stopover. Nothing heal related to this encounter. Nothing urgent. And they know each other for years and met also...
It's a cool story and all but did he really need to stop her plane leaving on time and rush over the airport to meet up with her? I mean, they'd met, she was on his frequent flyers account, probably could have just send an email "hey, we were passing by just the other day and I thought of you, want to catch up?" Does she otherwise have to worry that every time she flies someone will stop her travel to recount the story yet again to a bunch of strangers?
> Does she otherwise have to worry that every time she flies someone will stop her travel to recount the story yet again to a bunch of strangers?
Sounds like it:
>> Owing to account notifications, David from time to time surprises Allie at an airport where they both happen to be, he said.
You know, this could make a decent setup for a Brian de Palma thriller: an attractive young cancer researcher volunteers to save the life of a dashing older pilot; in return, he helps her out by offering to add her to his flight benefits. Naïvely, she accepts — but then he keeps on showing up to her flights. Then he starts appearing at a conference presentation. Then at her lab. Then her home. He won’t take ‘you’re welcome’ for an answer.