My son died in 1994 but his heart only stopped beating this year | Hacker News Reader

My son died in 1994 but his heart only stopped beating this year

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303 pointshappy-go-lucky112 comments

I want to raise awareness that you don't have donate an organ to save lives. Blood cancer patients all over the world are frantically looking for bone marrow and blood cell donors. The chances for a match are very low, but if they find one the chances of success are high. So you can understand the desperation.

The thing is, an actual bone marrow extraction is only required in 10% of all cases, most of the time you only have to donate blood cells. It's painless and pretty much non-intrusive.

Check out https://www.dkms.de/en or https://bethematch.org/ for more information about the subject. Costs for the match test are unfortunately not covered by health insurance here in Germany, but it's only 30€ or something in that order.

If you ever wanted to save a life, get tested.

Can confirm: this is an incredibly low-barrier-to-entry thing.

I'm a U.S. citizen, so I signed up with Be The Match. Four cheek swabs that they send you in the mail. Swab your cheeks, package them up, send them back.

I got notified that I was a preliminary match just five months after signing up. Sadly, I wasn't a full match (hopefully someone else was!) after going through the blood draw.

All in all, it cost me nothing monetarily and maybe 3 hours total between questionnaires and the blood draw when I got matched.

I only worry about the drugs they have you take prior to increase your blood cell production

Why? Others are donating a whole kidney or parts of their liver etc, which is much riskier. Compared to that, taking some drugs for short time to increase blood cell production sounds tame.

I'd rather worry about the bone marrow donation. Once you sign up, you potentially have to give bone marrow or have to live with the fact that you could've saved someones life, but didn't.

Jumping in here - I donated peripheral blood stem cells (PBSC) a couple years ago and the process was easy and incredibly rewarding. I encourage all to participate, especially if you have non-European or mixed ancestry!

> especially if you have non-European or mixed ancestry!

I'm curious, how does it matter?

https://bethematch.org/transplant-basics/matching-patients-w...

Recipients are more likely to match with donors of similar ethnic backgrounds. Today, Black, Hispanic, Asian, and American Indian patients are far less likely to find a match in the registry than White patients.

Yup, the test is extremely easy too. Just requires a simple swab on the inside of the cheek. I know there are a decent amount of donor drives that you can find through the website that will add you to their registry

Shameless Plug: The football coach at the college I went to actually has a charity dedicated to getting more people to take the test and I think is associated with the Be The Match organization. One of his players (who now happens to be an outfielder for the Chicago Cubs http://www.chicagotribune.com/sports/baseball/cubs/ct-matt-s... ) ended up being a match and ended up missing a good chunk of the baseball season even though he was expected to be drafted by a Major league team that year. Pretty cool story

My dad's life was saved 10 years ago via a bone marrow transplant from an English woman. He was being treated for Leukemia.

Thanks for promoting this cause!

If you are affiliated with the US DoD ("A member of the U.S. military, Reserve, Coast Guard, National Guard; military dependent; or DoD civilian employee") you need to sign up with https://www.salutetolife.org instead.

Do you know if they ever reject donors due to health issues? I've been rejected for blood donation before because some blood centers consider fibromyalgia an auto-immune condition. I couldn't find anything about it in the donor faq though.

They have a medical requirements page: https://bethematch.org/support-the-cause/donate-bone-marrow/...

It looks like fibromyalgia does make you ineligible.

So you can donate bone marrow, even if you can't donate blood because of possibly being a mad cow carrier?

They also won't accept you as a donor if you have any kind of auto-immune disease (because we still don't know how it works and if it can be transfered via blood cells or marrow), and generally, your body has to be in good shape.

I thought about donating but my doctor discouraged me and advised me to take it serious, e.g. don't lie while filling out the donation forms. Even though it probably would turn out fine someone could die because of you which is exactly the opposite of what you've signed up for.

I would love to donate blood, but it seems I'm too sensitive to blood. Not sure why. But there have been cases where I have passed out after giving blood tests or cutting myself. Would love to hear ideas how to overcome this.

I donated a lot when my father died. Just make sure you're not looking at the bag filling with your blood. We're programmed to think that our life is dripping out through that cord but be positive and aware that this helps someone and also regenerates your blood so it has its benefits.

Don't look and prepare mentally that you're not going to die there. I know it sounds absurd but the "fight or flight" situation kicks in and, like with panic attacks, the fear of actually dying probably leads you to pass out probably.

I'm not sure that's really a fight or flight response since passing out would leave one extremely vulnerable to harm from predators, the environment.

You never had a panic attack. When the brain overloads in such situation will take the most extreme action it can, shut you down, put you to sleep so you can't feel anything probably. It won't happen to everyone but it does to many. I've had some panic attacks 5 years ago that got me close to that point. I didn't pass out but I was right there, in all instances I ended up in the ER though.

I have a friend who's girlfriend was driving one day and the car slipped off the road going towards an electrical pillar (it didn't hit it though because my friend managed to grab the wheel). Near the collision point with that pillar his girlfriend passed out, in an instant. We laughed at that situation for years. They ended up in someone's yard, killing a poor dog in his little house.

That's called Vasovagal Syncope [0]. It doesn't necessarily happen because you see your own blood in a bag, but rather because of the physical implications of having blood removed from your body. Drawing slower or smaller volumes can potentially help mitigating this problem. I think it can also be seen as an indicator for other medical problems regarding your circulatory system, so it might be worth investigating further.

0: https://en.wikipedia.org/wiki/Vasovagal_syncope

When giving blood, you could be experiencing vasovagal syncope -- fainting due to the drop in blood pressure and / or blood sugar. That's why they always hand out high-sugar juices -- hydration and sugar help reduce those effects. There are also sometimes symptoms before passing out. Here's a good article about it:

http://www.livestrong.com/article/166968-why-do-people-pass-...

However, that doesn't answer cuts. Does it happen on any sight of blood or only your blood?

I know a bit about this due to having researched after I gave blood the first time. Ends up the person was not very experienced and ended up drawing from muscle instead of a blood vessel. I was in for probably about 20 minutes with only half a bag before they gave up and sent me on my way. Walking from the parking lot to the office, I got lightheaded, nauseated, cold sweats, some gastrointestinal effects... But did not pass out. In my case, I think it's blood sugar related, as I had a similar reaction once while fasting.

Dude (m/f), don't drive after donating blood. Go with a friend or take public transportation. You're a risk to others, too, especially if you don't donate regularly and don't know how you'll react.

They park donation vans outside of office buildings, it's probable that's how he donated.

Yes, you are absolutely right. In this case, there was a mobile collection unit in the office parking lot. This is very common where I live. Sorry for the confusion.

Try go with a talkative friend who can take your mind off it and definitely let the one sticking you know.

I also had this problem and finally asked a therapist about it last year, because I was pregnant and having to do a million blood draws. He surprised me when he said the last thing you want to do is try to relax (which is of course what the nurse always tells you to do).

Instead, start tensing muscles in your body - legs, hands, wherever. This keeps the blood pumping to your brain so you don't faint.

It absolutely works. I can even watch them draw the blood now and feel fine.

I live in the US now but was born in the UK and lived there until I was almost 30. Each time I tried to give blood here in CA, I was told I was ineligible because of the possibility I was a carrier for "Mad Cow Disease".

Anyone know if that's still the case or if there is a way to get tests and cleared for donations?

I believe you can't ever get cleared. The only way to confirm mad cow is to dissect the brain, so obviously it can't be tested for in a living person. As a result, anyone with over a certain amount of risk for mad cow can never be allowed to donate.

You can still donate (blood, at least) for research purposes, if you can find someone who's collecting it. Bonus, you get $50–100 instead of a cookie!

If I had leukemia, I'd love some possibly-mad-cow-tainted blood/marrow from an otherwise healthy donor.

:-) I am the UK kidney transplant list last year I turned down a potential kidney as there was a risk that the donor was potentialy HIV+

The surgeons second line was "don't worry we have really good drugs for HIV these days"

In the end we agreed that given my age and I then had fairly good function left that letting some on else have it was for the best

I lived in Germany in the mid 80s (military brat) and I also have always been told that I can't donate because of that.

It's still a thing, see: http://www.redcrossblood.org/donating-blood/eligibility-requ...

I lived in Germany for three years in the '00s so I'm ineligible.

Thank you for the reminder. I signed up.

The day after the House passed the awful AHCA, it's nice to feel I am doing something to potentially improve the health of another.

I'm literally getting a bone marrow transplant today to treat leukemia. I'm in the US and my donor is somewhere in Europe. I can't thank these donation networks enough -- they are saving my life.

Good luck! I hope everything goes well

Giving blood is the easiest way in the world to invest in the karma bank account. One of the easiest ways out there to save lives.

The problem with blood donation, for me, is the time between donation.

I donate plasma twice a week, i have for years now. 880mL of plasma every donation... Whereas blood you have to wait 8 weeks between...

Not saying blood is less important, just important to understand there are options... all of it is important, and i think everyone should be donating something in their body like blood/plasma that is renewable and costs your body next to nothing to give...

Registering as a bone marrow donor is particularly valuable if you're mixed race. Bone marrow transplants require a very high degree of genetic similarity, so it can be very difficult to find matches for mixed race recipients.

http://content.time.com/time/health/article/0,8599,1993074,0...

My life was saved by bethematch donor. Who ever you are anonymous donor, I thank thee.

My entire family and all our friends signed up once they realized how easy it was. Do it.

Humanity at its best: Your son gets killed in a foreign country and, rather than being angry with the people of that country for producing some murderers, you actually help seven other families with organs from your now dead son. And, the family (or is it just the father) still come back to the same country to celebrate with the children who received the donated organs. I salute that family.

It's interesting too, because in many countries, there's VERY strict patient confidentiality that would prevent the family of the donor from ever meeting recipients.

If both parties agree to meet, doctors can enable that, even in countries with strong patient protection laws. People in the US do this sometimes, too.

You don't need to have someone die to create a life-giving chain of organ donations. Take a look at:

Why I gave my kidney to a stranger — and why you should consider doing it too https://www.vox.com/science-and-health/2017/4/11/12716978/ki...

Wow, very gutsy.

Donating has its risks, after all there's a reason we have two, when only one does the job. I know a person who donated one kidney to his son and was told to essentially change his lifestyle at least when it came to physical work.

It is cool that donors automatically go to the top of the donation list if they need a kidney in the future.

I mean, they paid into the system and went from 2 to 1 to zero kidneys. Seems fair to me.

Yes it is. It certainly helps ameliorate the long-term risks of complications associated with becoming a living kidney donor. While those risks aren't massive, they're certainly enough to make people pause. Anything that can lessen those fears can only help.

http://khn.org/news/what-happens-when-a-living-kidney-donor-...

what happens if they get two kidney fails, are they still top of the list for a third?

This sounds noble and good and all, but us parents can't justify the risk. We need to be here for our children.

That's a terrible idea.

From a Reddit thread:

>I have a friend who is a doctor. I have another friend trying to donate a kidney to a stranger. My doctor friend said that's a terrible idea for you personally because doctors have a phrase "nobody should die with 2 kidneys." What it means is that a lot of extreme medicines they might try if you're really in trouble have a high risk to kidneys. In other words, you need a buffer kidney in case of a need for risky medication, as that is very common. Just my personal experience.

There was a story in Eastern Europe just recently: a 20-year-old guy desperately needed money and sold his kidney for $15k so that he could marry his girlfriend. He died a few weeks later.

I'm not too sure about the "life hours gained" numbers. Where do they subtract the risk of death on the table?

My own son had his eye saved by an organ donor when he was an infant. We live in Canada which is still opt in so someone made the decision that they wanted to give up a part of themselves after they died. For that I am grateful.

That's inspiring. If you don't mind divulging more details, can you tell us how your son's eye was saved? Do you mean they transplanted an entire eye, or was there a critical part of the eye donated by someone else?

Also interested if your son has heterochromia as a result. I'd imagine that's the case if there was substantial change to the original iris?

Eye transplants are usually corneal transplants - just the clear lens in front of the iris and pupil is replaced.

It's not currently possible to transplant an entire eye, as a lot of nerves would need to be re-connected.

They transplanted tissue on top of the eye as part of implanting an Ahmed valve. My son has primary congenital glaucoma. There is no obvious signs like heterochromia, the entire transplant and most of the valve is between his eye muscles.

I'm in Quebec and it's also opt in here, probably is pancanadian setup.

Do you know why is opt in and not opt out like in other countries. What's the thing blocking this? Do you know if there's an organization making pressure to make it opt out?

I'm asking you because I'm guessing you're familiar with transplant topics.

The system in Canada is a bit of a hodge podge managed by each province independently, and in some cases with private partnerships. The David Foster foundation has been the main force behind introducing opt out donation in Canada but I haven't seen any traction.

Wow, that's amazing that they were so willing to try and help others. However, reading this 7 days before I take my 4 year old and twin 1 year olds to Italy was not the best timing on my part.

Just stay (sadly) away from Sicilia, Campania, Calabria, Puglia.

Edit to avoid misinterpretation and backlash: those are the 4 regions (out of 20) where the Mafias (Cosa Nostra, 'Ndrangheta, Camorra, Sacra Corona Unita) kill the most.

If he comes from anywhere other than the EU (and even then, depends where), Italy, or even Sicily in particular, is much safer regarding murder rates. Italy is super safe. If you or him wants more details, numbers etc ... They're all readily available, but even a quick glance at these two maps tells the story:

World by country level: https://upload.wikimedia.org/wikipedia/commons/7/76/Map_of_w... (Yes, Italy is safer than Canada or Australia)

Europe by regional level: https://ourworldindata.org/wp-content/uploads/2013/03/europe...

So yes, even in the few parts of Italy that aren't scoring perfect, the murder rate is as dangerous as visiting the french south east coast, or visiting Scotland, or even north Germany. Not exactly hell of earth.

You are still much more likely to die in a traffic accident in these regions than get murdered. By most standards (even Western European ones) these regions are still very safe, so I don't see any reasons why you should avoid them. Furthermore, Italian mafia, unlike some movies like you to believe, usually don't kill for fun - most of the related murders are targeted killings of rivals, witnesses, debtors, investigators etc.

O nenni, laghe sono italiano

The mafia, even if it is as once was, does not target "civilians." You have a much greater chance of being slashed by a 14 yo gang-member in USA

Worth noting is that, although the USA does have a crime epidemic, the typical murder doesn't take the form of random shooting or a mugging gone wrong. Think young men who already know each other shooting each other.

Do we really have "a crime epidemic"? These data don't show that [1].

[1] https://en.wikipedia.org/wiki/Crime_in_the_United_States

Of course we don't, it's just perpetuated by the media. Every single incident is blasted into our faces, until we're all living in fear of everything.

How many murders is a reasonable amount?

Yeah, they only target each other or rebellious shop-keepers and while targeting those targets they shoot in broad daylight on the streets, in shops, and so on.

https://en.wikipedia.org/wiki/Giovanni_Falcone#Death

https://en.wikipedia.org/wiki/Via_D%27Amelio_bombing

https://en.wikipedia.org/wiki/Santo_Di_Matteo#Killing_of_son

Killing police officers, wives of judges, priests who speak up agains the Mafia, torturing the 11-year old son of a pentito for two years... Charming. This romanticized view really does make me angry. The Mafia are scum, they are lowlife despicable murderers. They're unreservedly wretchedly scum. They haven't a a moral code, they bring misery to others for their own benefit, and as such they aren't above any other scumbag criminal (like the 14-yo gangbanger you deride).

The Mafia are scum, they are lowlife despicable murderers. They're unreservedly wretchedly scum. I agree. You should post this to the person that praised them.

The post I replied suggested that Italy is not safe because of Mafia. Yeah, Salvatore Riina did go into terror to force the state to settle some 20+ years ago, but how many people not related to their business were killed vs mafiosi? Things happen. People fall out of their beds too. USA and other countries have their own problems.

My point was that Italy is to be considered dangerous for tourists because of the mafia. https://en.wikipedia.org/wiki/List_of_countries_by_intention...

Oh, absolutely, I agree on that point.

Do you happen to know the chances of "being slashed by a 14 yo gang-member in USA", or did you just invent an example?

https://www.google.com/search?q=slashed+subway+initiation+ga...

Hey, I wrote "where the Mafias kill the most". The most.

I honestly think all the replies miss my point.

Oahu is the place in Hawaii where coconuts kill the most. Just stay (sadly) away from Oahu.

Or maybe you can take your chances.

That's a perfectly legit reply to someone who just expressed concerns for their kids over accidental killing by coconuts in Hawaii.

Don't be scared: homicide and crime rates in Italy are very low, especially if compared to the United States (assuming that's where you're coming from).

The problem with the Mafias is not so much the killings, but the impoverishment and corrosion of everything they control.

The article doesn't portray a realistic view of crime rates in Italy - they say "violent death is commonplace", but I don't think that's ever been true, and it certainly isn't now.

Be careful, as always, but Italy isn't an especially dangerous place. Some regions have higher crime rates than others, but even then, I wouldn't worry too much about it.

> they say "violent death is commonplace", but I don't think that's ever been true

The Greens happened to be in a bad place at a very bad time - late-80s/early-90s saw big changes in organized crime and political structures, with all the trouble that sourt of situation will inevitably bring. Things are nowhere as tense today. Unless you specifically head for the ghetto, the worst that can happen as a tourist is overpaying for taxis.

Most of the killings in Italy happen in the context of organized crime, and they almost never make erorrs, this was a very odd situation. In general Italy is a very safe place if compared to London or most parts of the US.

Most parts of the US are just as safe. Just stay away from urban crime zones.

Yep, that's what I mean, in 99% of italian cities, it is impossible for you to get lost, go around at random, and reach an "unsafe place".

I've been there many times, its amazing. Have a safe trip buddy.

I'm amazed that Reg has 21 year old twin daughters at age 88! I'm sure raising kids at 60 will keep a man young.

I remember that from when it happened, it was widely reported at the time, even in the UK. Hard to believe that it's 30 years ago now.

Edit: Sorry, Nicholas was born 30 years ago, it was 23 years ago when he died.

1994 was 13 years ago.

Nobody correct him/her.

So it was, once.

And for a whole year!

Margin of error +/- 10 years.

You must be very old ;)

jurinawaw...

"Andrea Mongiardo, 22 years following the transplant of American seven-year-old Nicholas Green’s heart in 1994, has died aged 37 of lymphoma"

http://www.italianinsider.it/?q=node/4998

What a well written article. Half way through reading it, my eyes started to swell up with tears ... the image of the father, who was driving the car, turning around to see his son, just sleeping moments before, now laying there dead with a bullet through his head.

That was a really nice and touching story to start off my Friday. Thanks for sharing!

I had the opportunity to see Nicholas's parents speak a few years ago, and their talk convinced me to opt in as an organ donor. When I first got my driver's license, I had opted out of more or less out of spite— the CA DMV's form seemed intentionally misleading, which bothered me. I suppose it still bothers me, but it changed my mind to hear firsthand about the impact that my body could have when I'm done with it.

On a somewhat related note, I highly recommend listening to "Gray's Donation" (http://www.radiolab.org/story/grays-donation/). It is an extraordinary episode.

Started listening and I recall having heard most of this one in the car. Great story.

That's the power of defaults. Italy changed to an opt-out program for donation, rather than opt-in.

HN title is confusingly incomplete

Yeah the title is a little clickbaity...

The article title is almost identical too.

BBC edited it shortly afterwards :)

Wow, what a clickbait.

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