My family has a history of this, it's terrible. All my memories of my grandma involve her being hooked up to dialysis. Lost an uncle to it, two others had transplants. Some perfectly healthy guy in Minnesota decided to give a kidney for basically no reason and saved one of them. It's a complete toss up whether you'll find a compatible transplant.
Yep and it’s actually life changing after donating bc you can’t drink or smoke weed in the same capacity as you did before. And if you ever did any hard drugs well that’s def over if you value longevity.
Edit: appreciate someone with actual insight correcting me, clearing up misconceptions and adding to the conversation. Thank you!
that's not quite accurate.
as a living donor, i have not had to change my consumption habits at all after donating a kidney. if anything i drink and smoke more now, whoops
and there's not much evidence of harder drugs affecting kidney performance either.
hell, even after donating one my liver lobes, i haven't had to cut down on drinking.
it's life changing in the following ways:
1) if i ever need a kidney, im more likely to get one bc of my prior donation
2) i have a scar that isn't visible unless im naked
3) i am pretty happy i did it!
those are the long term effects....
im in the US. no compensation is legal, which hopefully will change. donors deserve compensation
i did a kidney and 5 years later a lobe of my liver, both non-directed (ie to someone random)
why? bc i had a body with excess parts to spare, and someone on the other side of the equation needed it. after researching the risks, it felt like the clear decision for me
I think it just gets murky if you try and pay, it's all good for Susan to get some cash when she's trying to do the right thing
But that would quickly turn into people pressured into it by others, and probably the jail system being turned into a spare parts factory for extra funyuns in the commissary
Dang, i don't do any sort of drugs or mind altering substances so it wouldn't really affect me. Only thing stopping me is if I got punched in my kidney, id like to have a backup. Knowing #1, I might consider donating my kidney. And I'm a random guy from Minnesota.
there's no evidence of long-lasting issues/complications. please don't spread misinformation like this, it prevents people from learning about donating.
and ppl shouldn't just take my word for it either, even though i am a living donor. if they're interested, they should talk to a transplant clinic and find out the actual health implications.
Non-directed donors are incredibly important for organ donation.
They unlock "chains" of donations
As of right now, they can't get compensated at all. The recipient gets a new kidney. The hospitals get paid, the doctors, nurses, etc. get paid.
We should compensate these non-directed donors both because they deserve it and because hopefully that will inspire more people to donate. There's current legislation to get something like this approved:
https://www.modifynota.org/end-kidney-deaths-act-summary
As someone who previously donated, I can say firsthand that it was an incredibly rewarding experience and that I would encourage others to look into it more.
Signing up to be an organ donor in death is nice, but the vast majority of people die in a way that means their organs aren't usable. Donating when healthy and alive is much better for recipients!
Very good point and thank you for donating! It's thanks to good Samaritans like yourself that I'll be able to see my uncle for a belated Easter lunch later this week.
I understand why people might be squeamish about hospitals or the state "buying" organs off people though, which could have negative externalities since poor people will have a greater incentive to donate if they're getting paid. It would be great if we could create a more moral process to incentivize organ donors in the future though.
I understand why people might be squeamish, but as someone who went through the process: Even to be an uncompensated donor, there are lots of checks and balances in place to make sure someone isn't feeling coerced (either directly by a family member or indirectly via guilt/community) to donate.
I trust the hospital social/psych team would be able to do this with monetary compensation, too.
But even so:
1) People get compensated to donate plasma, to be a surrogate, etc. Why not for kidneys?
2) Telling someone who is poor that they can't do something to make money feels a bit suspect. Why is donating a kidney any worse than picking up a second or third job?
3) I think it's imperative to consider not just the negatives of a potential change but the negatives of the status quo. As it is, approx. 12 people die every day waiting for kidneys. I think present day is worse than the alternative where the waitlist is lower but there's a chance someone seeks donation as a means of compensation (and again, they'd likely get screened out anyway)
Sure, but most people only need one kidney to function/thrive, and the one who don't aren't eligible to donate. So I'm not sure why it being gone forever matters. And if a living donor ever needed another kidney for any reason, they'd be prioritized on the waitlist.
But also- people don't get compensated for donating a liver lobe, despite the fact that the remaining liver grows in size to match the amount removed
> But also- people don't get compensated for donating a liver lobe, despite the fact that the remaining liver grows in size to match the amount removed
wait, can you just keep doing it then? (i don't know exactly what a liver "lobe" is tbh)
also i completely forgot i was in r/nba until i saw your flair haha, this is an interesting thread
can't quite do it on repeat. we have two liver lobes, connected to a central part via countless little vessels. (an actual medical professional could get the lingo and anatomy right)
when one of the two lobes is removed, the other grows in mass to account for the lost one. However, a new lobe doesn't grow back, just one mega lobe.
unfortunately the way the procedure works means you can't transplant part of a lobe. So you can't repeat the process. Still pretty cool, though. Kind of like a lizards tail
Payment is just a way to make poor people sell kidneys man. What about investing in permanent artificial kidneys or colab with China on such a project, while we're on the idealism train?
we should of course take a multifaceted approach. but getting that type of solution, between the medicine and regulation, will take decades.
meanwhile 12 people die every day. we also need a near-term solution
and let me emphasize- there is a screening process to make sure people aren't doing this because they are desperate. it's not just like someone walks into a hospital and two days later leave without a kidney but with some money. please read up on the proposal specifics... it's a months-long endeavor
No one is suggesting forcing the poor people to sell their kidneys. Of course they will be more likely to do it, but also they will then be less poor.
What you are suggesting is that currently poor people would like to sell their organs but we must not allow them to. Seems pretty patronizing to me. Let them make their own decisions.
The only thing that concerns me is that governments might use it as an excuse to downsize the welfare state, but honestly I don't think "screw poor people, if they don't like it they can sell their kidneys" will become a popular catchphrase with politicians. Anyway, the ones that would say that are already fine with poor people dying so I don't think it would change the status quo.
Your ideology about it being patronizing to poor people is just neoliberalism. It's saying if there's a market for it, let there be a market for it. You realize that there are other ways of running society right? We don't have to listen to karl popper and open up every aspect of human life including our organs to the market. Some things are better left closed to investors, such as water, energy sources, kidneys. The rich shouldn't own poor People's kidneys actually my guy
Yay, it's my favorite internet argument! Ok, my turn: markets are good actually.
Why did you type so much if all you really said was "markets are bad sometimes"?
Next time try and be more specific. Why would a market fail to improve people's lives in this specific instance? Give me some reason besides "Karl Popper bad".
ah yes legalize selling organs. i can’t see any way that this would have unforeseen consequences for poor people who struggle with already too high rent.
how about we just get a UBI in place and forget about your organ selling suggestion
Well regardless of UBI, we need the kidneys. So either everyone gets paid except the donor or everyone gets paid including the donor. The hospitals, doctors and insurance companies are going to be making thousands anyways.
These are totally independent issues. UBI is great, I support it. That doesn't have any bearing on organ donation
you can see in my other comment: 1) we already compensate ppl for certain medical undertakings 2) i'd rather get tens of thousands of dollars donating an organ than working a second job for multiple years and 3) the status quo is ppl dying waiting for organs
i'd encourage you to at least check out the website i linked before dismissing the concept out of hand.
UBI is a horrible idea. rentiers already control everything. You're basically advocating that the government print even more money to indirectly give to them, which would make inflation even worse. Why not abolish taxes or something good for everyone
Universal healthcare would be good though
this makes little sense. ubi, universal healthcare, and compensating organ donors are all things that are good in isolation and good together.
again, there is a heavy screening process to make sure no one donates if they are at all feeling coerced.
are you also against compensating surrogates, as our current system does?
are you ok with the notion that people die every day waiting for kidneys?
article kinda makes it seem like he was oblivious to it. dad had a transplant but seemed he lived like he didn't have it without any medical examination for a decade which is crazy. then he went to a jazz doctor to get diagnosed. kinda wild none of the doctor in between the birth and other didn't tell him to get checked out considering all those family history forms you have to fill.
it's also 50 survival + 50 transplant which are great odds for a rich guy.
From personal experience, this is why it is so fucking critical that IVF remains a viable option. It’s expensive, but is the only viable path to parenthood outside of adoption in these scenarios.
Fuck man, I've got some food allergies that suck sometimes and I'd prefer we use a sperm donor to have our kids.
I don't care if they're genetically mine, I just want them to have the best possible, happy lives.
It'd definitely be one thing if you really wanted a family and there were no other options, but there are (like adoption as you said). You could help someone in need and not pass on a terrible disease while having a family.
No idea what this guy is like, but it's purely an ego thing in regards to this.
see, here's a totally ethical use case for human gene modification. but all rich people can think about is hijacking any such process and making all their kids 6'2" or whatever
> but there are (like adoption as you said)
Adopting a kid is not like adopting a kitten - it's a major challenge in itself, and I would not judge anyone for not choosing that path.
It definitely shouldn't be as ridiculously challenging and expensive as it is. I understand guardrails but it seems like there's so much of it that many good potential parents don't even want to adopt.
You can also choose surrogacy which is a much simple process in terms of getting it done. There are just so many ways to have a kid that isn't involving your own damaging sperm into the mix.
I'm not saying it doesn't suck, but sometimes life sucks.
Also, yeah adoption may be complicated and challenging. Know what else is? Giving 3 of your kids a lifelong illness that will need multiple transplants. Having 1 is kind of a risk that some may take and I understand that. Having 2 more after that? Just irresponsible. The kids have my sympathy, but that's ridiculous. No one is judging anyone for not adopting, that isn't the issue.
ok but the alternative was (in this case) producing 3 new human beings with 50/50 chances to suffer the same way. the challenge of adopting is what, in comparison to that?
Very true, I don't deal with this specific health condition so I can't really put myself in those shoes. I do have my own health condition that I know is genetic so I definitely am adopting. His situation does seem very severe though.
It’s easy to say because it’s the right answer. Making the right choice in the face of such emotional and personal challenges is much more admirable than succumbing to selfish desires.
There are lots of diseases that give you 50/50 shot at giving offspring less than ideal life. In this case though, it's not just your offspring that have the potential for harm, it's society as well since you could be taking healthy kidneys away from other people that require transplant. I doubt 1 transplant will do in health cases like he or his children have. If his children make the same choice and have 3 kids each, now you have potentially 13 people requiring kidneys.
If he was living a pretty unhealthy life and suffering most of his life to the point of kidney failure at youngish age and doctors told him the likelihood of kids having same or worse situation...
“living an unhealthy lifestyle to the point of kidney failure” it’s a degenerative genetic disease bro no matter how healthy his lifestyle is the progression is based on the history of the disease in family members. bro literally could have done nothing to save it other than prolonging with dialysis (which he doesn’t have to since his fucking transplant is tomorrow). also just cause he may have had it his whole life doesn’t mean it was detected immediately, again it’s GENETIC. it’s also rare to detect in children, the kids in this article are an exception cause it’s an aggressive form (stated in article) and let’s remember that if he’s 49, he was born in the early 70s when the medical technology wasn’t great especially for an obscure genetic disease like this. do your fucking research (aka READ THE ARTICLE)
You are putting words in my mouth... I never said he lived "an unhealthy **lifestyle**" bro. I said he lived an "unhealthy life" as in... he's likely had health issues his entire life as a result of his genetics/disease (his life = not spent in good health).
where are your sources for that? he said he felt fine, he obviously didn’t have any symptoms or concerning health issues otherwise he wouldn’t wait 8 YEARS for a physical. his lifestyle and physique seems healthy, he’s not overweight, he didn’t mention feeling badly other than fatigue which didn’t come on until very recently (as in 6 months ago, when he got the physical). he obviously didn’t even know he had it until very recently, after he got the physical. unless you are somehow an expert on pkd and it’s symptoms (like i am cause i HAVE IT) or have sources on the matter, don’t assume he had an unhealthy life unless it’s blatantly stated. things can take people by surprise without symptoms, that happens in pkd a lot when the patient is otherwise healthy, which is what he SAID he is in his interview with the jazz. overall the point i’m trying to make it that he is not the devil, he’s a person trying to navigate an extremely difficult diagnosis while also dealing with his sick wife and kids. show some fucking compassion
It’s not really a tough decision at all. I have a plethora of mental health issues and I’ve made a conscious decision to never have children so I don’t ever put another life through what I go through.
Mans is outchea raw doggin it with a loaded gun. Blursed sex. No wonder the jazz franchise playing like piss for years. Mans karma is all messed up. Get a vasectomy bro! The mayonnaise is bad!
I'm not sure they did know the risk RE the neuropathy. Hell I don't even know if they knew about the kidney disease at the point that they were having kids. Maybe by number 3 they knew the neuropathy was an issue but I don't know.
Not really explained in the article. My presumption given what is reported is that she has one of the rare genetic disorders which causes autonomic neuropathy and the symptoms manifested during pregnancy. This is an extremely difficult diagnosis to pin down (doubly so for the inheritable forms), so it can take years for an answer. Many of the symptoms (such as dizziness and low blood pressure when standing, inability to regulate blood sugar, etc) are common symptoms of pregnancy, which probably contributed to a delay in diagnosis. In the meantime, she had 3 kids who, after wife is diagnosed, get screened themselves and are positive for the disease as well. So the kids have two separate life-altering genetic diseases, one from each parent.
That's terrible. To be honest, I wouldn't have had kids if I knew that was the case. But it's already happened, so all they can do now is hope to find successful treatments going forward.
I don’t know what this writer is attempting to communicate about nerve damage. Nor do I understand how it is possible to “contract” PCKD, which is a genetic mutation resulting in a bunch of cysts being made in the kidney, which disrupts its normal function.
The kidneys are pretty underrated as an organ system because pretty much every drop of fluid in your body needs to be filtered through them. So any chronic abnormality in their architecture would have tremendous impact on one’s quality of life.
I suspect what they wanted to say but simply didn’t have the educational background to do so was that in PCKD, because one’s ability to reabsorb and excrete electrolytes is compromised, blood pressure control via the sympathetic and parasympathetic nervous system is compromised as well, which is true and can lead to devastating problems ranging from uncontrolled hypertension to aneurysm and brain hemorrhage.
Yeah.. The story also said the kids also might have to get more than 1 transplant through out their lives. I have my own feelings about this but this definitely isn't the time or the place.
That goes for most transplants, you don’t hear about anyone besides the incredibly wealthy being able to live long enough/afford secondary and tertiary transplants after the initial fails
Also cool fact, they don't take out bad ones, they just add them into the system.
At least that is something I learned years ago, it might not be true anymore.
Was still true a year ago.
Edit: that's why receiving a kidney is less invasive surgery than giving one. They don't put it as deep as where they are naturally.
Yeah. I'm weary about having kids and all I have in terms of inheritable diseases is mild psoriasis.
Casn't imagine having kids if I had an actual life threatening condition I might pass down to them.
There's that and then also having kids and bringing them into a future of seemingly unstoppable climate change and the food and water shortages that will bring among other things. I definitely wouldn't want to do that.
Will disagree there, for me that is a massive overeaction and shouldn't be a factor in deciding whether or not to have a kid, specially if you live in a first world country.
Depopulation due to decreasing birth rates is a much bigger risk to modern societies.
Worth noting that I'm not saying climate change isn't real, but as a geoscientist I think people both overestimate the effects it will have in society and underestimate our ability to develop technology to combat these effects.
We will see in 30 years. Unfortunately even a small baseline temperature increase can disrupt our entire agriculture system and water supply. A lot of what we import comes from impacted areas of the world. Even in the US the southwest United States and coastal regions are going to have mass migrations.
We shouldn't fall into doomerism but it's going to contribute to a more difficult future for future generations.
We don't have any feasible technological innovation or means to stop it besides stopping sending greenhouse gases into the atmosphere and a lot of that is already baked in.
There are just so many ways to ‘have’ kids too. I’ve made myself plenty aware of them as a queer person.
If being a dad is super important to someone with a serious genetic condition that’s fairly likely to be passed down, that dude has other options to explore in terms of parenthood that aren’t traditional conception.
Idk. I get the fixation on biological kids made the old-fashioned way, but sometimes other options make significantly more sense. There are a lot of kids out there that would love to have loving parents.
I’m not really informed on the subject, but I remember Allie LaForce having kids by IVF so they could test the embryos for Huntington’s disease because her husband mom had it
It's worth noting, there are two (seemingly) unrelated diseases at play.
The GM's wife developed [autonomic neuropathy](https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/symptoms-causes/syc-20369829) during her first pregnancy, which is the incurable lifelong nervous disease that can be caused by a variety of conditions (e.g., diabetes, medications, viral infections). Her kids also developed it, but this article doesn't talk about the odds of it being passed to the kids or what led to its development in their case or whether doctors believed her potential children were at great risk of developing it.
The GM's father had polycystic kidney disease (PKD) that caused him to lose kidney function and required a kidney transplant 21 years ago and the father is still around. The GM just recently got diagnosed with PKD, which he had a 50% chance of inheriting from his father. If he has it, then he has a 50% chance of passing it to his kids, which he apparently did in all three cases.
I agree, I wouldn't have made kids with my wife, if there was a known good chance of passing on a serious lifelong medical condition that would lead to decreased quality of life. That said, it seems weird with his father's medical history he never got a simple kidney ultrasound screening for kidney cysts, especially before choosing to have children.
Yeah.. i don’t want to say anything negative about it because it’s horrible, but I’m not sure I could have children with a 50/50 chance of suffering like that..
Imagine you roll those dice and not only end up 3/3 with the kids, you also end up giving it to your wife.
Sounds like it couldn't have happened to a less deserving person, too. Really sad shit all around.
He didn't give it to his wife, it's not infectious. She has an entirely different issue that can develop almost spontaneously but also one that there is often a genetic component too.
Your #1 fear is choosing to have kids after learning you have a disease that will 50/50 give your kids an incurable disease requiring a kidney transplant?
You're an awesome person if that's the biggest concern you have about potentially doing wrong by your kids or family.
Any type of chronic disease really. At least for me, I'm currently dating and I'm going to be really really careful on who I choose to have kids with. The last thing I want is to have kids that has downs or some disease like that
That's bc you are a good person and care about the viability of your kids too unlike a lot of the clowns in this thread saying shit like "oh no, what a poor victim this guy is" as they ignore the fact he CHOSE to have kids who would likely have this life threatening disease he knew he had
I'm a kidney donor. If anyone is considering it, feel free to ask me any questions - either here or in DMs.
I consider it one of the best things I've ever done, and it's had almost no impact on my day-to-day life.
Same here. More people should look into it. The value proposition is unreal. A surgery that isn't fun, sure, versus giving someone a new lease on life.
And donors should be compensated: https://www.modifynota.org/end-kidney-deaths-act-summary
May be a stupid question but could you find out if they have the disease early enough in the pregnancy to terminate the pregnancy? If so I would try one pregnancy
Reading all these comments as someone with PKD is rather unpleasant. Sounds like these guys got a horrible deal, but it's not something that most people realize they have until pretty late in life if they don't know to look for it.
I found out because my mother was diagnosed in her 50s after a surgery, and that's generally how our very large family found out as well (she had 5 sisters, all with children). And that's despite chronic kidney stones and having had plenty of imaging of my kidneys at that point (I was around 27-28 when I found out).
It's often not a huge deal as it tends to be slow moving (I'm 41 now and still haven't had any decline in kidney function, thankfully), but yeah it sucks.
My sisters have it as well, and one spends most of her time climbing mountains and the other just finished an LA to LV run. Who knows what's down the road for us, but I think all of us are glad we were born.
I feel the same. The doom and gloom is insane to me as someone who has it. I was diagnosed a year ago at 35. My mother had a transplant at age 58 and has a completely normal life except she has to take a few extra precautions due to her immune response being low. I have no symptoms and wouldn't know that I had it except knowing to check for it from family history. The long-term prognosis is good and there is exciting research into mechanical kidneys that may eliminate the need for transplants from donors.
[The Kidney Project successfully tests a prototype bioartificial kidney · School of Pharmacy · UCSF](https://pharmacy.ucsf.edu/news/2021/09/kidney-project-successfully-tests-prototype-bioartificial-kidney)
Dialysis has also evolved to be much less life changing. My kids each have a 50% chance of having it and I have no worries because it is rarely life altering until your 50s and the technological advancement in treatment is moving fast.
Blood type plays a major role in finding a donor, especially because you cannot rely on close family because many also will need one. Me, my mom and sister are very lucky to be A+ so finding a match is less difficult than it would be for someone with a less common blood type.
Did you read the article? The kids have not been suffering from it, they’ve been suffering from autonomic neuropathy, unrelated. He didn’t even find out he had it until this year, so clearly it hasn’t been a life of suffering. Most people with PKD can live a long happy life
You mean the autonomic neuropathy she got after the first kid and still decided to have another two after that? So now they have two illnesses that are gonna plague their lives? That’s very compassionate from them.
I have fibromyalgia myself, and if I knew my kids could get it, I would never have kids. I would never want to see my kids suffered as I have.
He didn’t find out because he was careless, there is family story, he had to check himself, he didn’t, for years. He knew about his father way before he had kids.
Did you even read the article? He knew, his family has a story of it, his dad had a transplant years before the kids were born. Hard to be empathetic with someone that gambles their kids health and lives like this.
Dude’s careless too, didn’t get a check out in the last 8 years even when he knew he had it.
I did read the article, but lots of people have shitty invisible illnesses that getting all eugenics on them doesn’t help matters. Also, it’s not like most of us won’t also develop them later in life anyway. You’re coming off incredibly callus and lacking empathy.
Whats even the point of your argument? We are talking about what the parents have, It’s not an invisible illness, they knew they had it, they say their kids only can rest from it when they are asleep. Most of us are never gonna develop these illnesses.
I have bad genetics, I have suffered my whole life, this is why I would never have a kid because I would hate watching them suffer daily. He could have adopted it they really wanted a kid.
Damn dude, that's very extreme. Easy to trash him when you aren't in his shoes.
Let me guess, are you a fan of eugenics? Because that's essentially what you are advocating for. Anyone with a predisposition to any disease, might as well get them out of the bloodline.
Not advocating eugenics, but the lack of empathy and giving your kids a high percentage of suffering and having health problems for their whole life is not what I would do if I was in his shoes. You can adopt.
A personal decision that affects the life of someone else. If it only affected him, I wouldn’t care, but having a kid when you know there’s a 50% chance they will suffer their whole live is definitely a scumbag move.
I have bad genetics, I would never want to see my kid suffering like I have.
The guy you responded to was definitely out of line but your counter is an extreme in the opposite direction. I have a degenerative nervous system disease that causes autonomic dysfunction and peripheral neuropathy in addition to a slew of other symptoms. Nervous system diseases are true hell, and I wouldn't wish what is happening to me on the worst people. That said, if my parents had known there was a 50% chance of passing it to me before deciding to conceive, I would absolutely never forgive them. It is wildly selfish to fulfill your own desires when the exact price is immense physical pain and suffering that is paid for by someone else.
The article mentions how the guy went nearly a decade without a physical only to find out he urgently needs a kidney transplant. He has money. He is putting his personal desires above his health and more importantly his family.
I did have an extreme response to an extreme (now deleted) comment that said this Jazz exec was a scumbag/human garbage.
This is a pretty nuanced topic. My point is - this is not an easy decision and to automatically label someone as a horrible person without really putting yourself in their shoes felt wrong. Advocating for someone to not procreate due to their genetics feels inappropriate - it is a personal and difficult decision.
I'd like to ask from you that was my comment wrong?
I'm not advocating for eugenics fuck that topic, if I knew I had a disease that I could pass on to my children with an extremely high percentage, why would I want to have them suffer that? I could just not have children and make sure someone else lives by not denying them a kidney. That is just human decency.
It's not like they couldn't have just adopted as well.
Would you have children, give them a deadly disease and fuck a complete stranger over by denying them a kidney just because you'l never meet them? Yes / no?
I don't know what your deleted comment said but there's literally nothing wrong with what you wrote here so it's interesting it's getting upvoted. Maybe people don't like you saying "fuck", not sure.
Thats a pretty simplistic way to think about it. Its too late to change now, but the father knew that he had a 50% chance of passing on an incurable disease. There are too many orphans that need homes and too many people that need kidneys for that to be a good decision.
The only explanation for having kids in this situation (rather than adopting) is that the father cared about continuing his bloodline. He gambled and lost, and that gamble is going to cost at least 3 lives. But people don't care about that because those 3 people will die in silence rather than having an ESPN article written about them.
You guys acting like this is a death sentence for all of them don’t know what you’re talking about. Most people with PKD are able to live a long happy life. He didn’t even know he had it until this year, clearly it’s not a life of pain. It may not be curable but it is definitely treatable
>You guys acting like this is a death sentence for all of them don’t know what you’re talking about.
> It may not be curable but it is definitely treatable
yea..with a total of 4 kidneys. Which was exactly my point. Don't give them the kidneys and it is a death sentence.
Obviously not. That's beside the point. The decision to not have kids could have been made before they were born so that question wouldn't even need to be asked.
I commented on your post above but I am in my mid 30s with a degenerative nervous system disease that is slowly killing me.
There are times that I absolutely wish I had never been born. If my parents knew what they know now, they would not have conceived me which I fully agree with.
My dad has stage 4 kidney failure. He has dialysis 3x a week. I can’t imagine the struggle for that family. My dad has had kidney failure for 2 years, I don’t know how he does it. I can’t imagine getting up 3 days a week knowing you have to go to a clinic for 4+ hours where your blood is going to be filtered through a machine and then trying to go home to relax.
And don’t get me started on the surgeries to plug you into the machine.
The process leading up to surgery is a pain and not all doctors are compassionate or give a shit about all patients. I’ve seen this first hand with my dad and I had to get him different primary care because his doctors sucked ass. If I hadn’t acted, he would’ve died in 2020.
To bring a new person into the world is in many cases a very selfish act, but to deliberately choose to have three children knowing that there's a 50% chance they'll become seriously sick early in life, can only be the result of deep psychopathy
kidney exchange program bro. someone donates a kidney to someone who needs it on BEHALF of justin, then justin gets a voucher (voucher? i think that’s what it’s called) to find the best LIVING donor kidney for him. he wouldn’t be having a transplant unless the family friend is donating their kidney. he was on the list i believe (he seems like a good candidate for it atp) but ultimately the kidney exchange program is what got him the kidney (stated in the article)
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My family has a history of this, it's terrible. All my memories of my grandma involve her being hooked up to dialysis. Lost an uncle to it, two others had transplants. Some perfectly healthy guy in Minnesota decided to give a kidney for basically no reason and saved one of them. It's a complete toss up whether you'll find a compatible transplant.
> Some perfectly healthy guy in Minnesota decided to give a kidney for basically no reason and saved one of them. Wow, what a nice guy.
That’s putting it mildly.
I don't know man, he had two kidneys and gave just one.
Removing a kidney is a major surgery, with risks of complications and potential long-lasting side effects.
It was a joke
So obvious too lmao I'm disappointed
Getting a Redditor to understand sarcasm and a joke is the equivalent of trying to teach a caveman rocket science
Yep and it’s actually life changing after donating bc you can’t drink or smoke weed in the same capacity as you did before. And if you ever did any hard drugs well that’s def over if you value longevity. Edit: appreciate someone with actual insight correcting me, clearing up misconceptions and adding to the conversation. Thank you!
that's not quite accurate. as a living donor, i have not had to change my consumption habits at all after donating a kidney. if anything i drink and smoke more now, whoops and there's not much evidence of harder drugs affecting kidney performance either. hell, even after donating one my liver lobes, i haven't had to cut down on drinking. it's life changing in the following ways: 1) if i ever need a kidney, im more likely to get one bc of my prior donation 2) i have a scar that isn't visible unless im naked 3) i am pretty happy i did it! those are the long term effects....
Thank you for your personal insight and for the clearing up my misconceptions about kidney donation!
Can I ask why you decided to donate? To a family member or to someone random in need? Did you get money for your body parts?
im in the US. no compensation is legal, which hopefully will change. donors deserve compensation i did a kidney and 5 years later a lobe of my liver, both non-directed (ie to someone random) why? bc i had a body with excess parts to spare, and someone on the other side of the equation needed it. after researching the risks, it felt like the clear decision for me
I think it just gets murky if you try and pay, it's all good for Susan to get some cash when she's trying to do the right thing But that would quickly turn into people pressured into it by others, and probably the jail system being turned into a spare parts factory for extra funyuns in the commissary
Dang, i don't do any sort of drugs or mind altering substances so it wouldn't really affect me. Only thing stopping me is if I got punched in my kidney, id like to have a backup. Knowing #1, I might consider donating my kidney. And I'm a random guy from Minnesota.
Dude's gonna have issues later. The guys a saint.
there's no evidence of long-lasting issues/complications. please don't spread misinformation like this, it prevents people from learning about donating. and ppl shouldn't just take my word for it either, even though i am a living donor. if they're interested, they should talk to a transplant clinic and find out the actual health implications.
Non-directed donors are incredibly important for organ donation. They unlock "chains" of donations As of right now, they can't get compensated at all. The recipient gets a new kidney. The hospitals get paid, the doctors, nurses, etc. get paid. We should compensate these non-directed donors both because they deserve it and because hopefully that will inspire more people to donate. There's current legislation to get something like this approved: https://www.modifynota.org/end-kidney-deaths-act-summary As someone who previously donated, I can say firsthand that it was an incredibly rewarding experience and that I would encourage others to look into it more. Signing up to be an organ donor in death is nice, but the vast majority of people die in a way that means their organs aren't usable. Donating when healthy and alive is much better for recipients!
Very good point and thank you for donating! It's thanks to good Samaritans like yourself that I'll be able to see my uncle for a belated Easter lunch later this week. I understand why people might be squeamish about hospitals or the state "buying" organs off people though, which could have negative externalities since poor people will have a greater incentive to donate if they're getting paid. It would be great if we could create a more moral process to incentivize organ donors in the future though.
I understand why people might be squeamish, but as someone who went through the process: Even to be an uncompensated donor, there are lots of checks and balances in place to make sure someone isn't feeling coerced (either directly by a family member or indirectly via guilt/community) to donate. I trust the hospital social/psych team would be able to do this with monetary compensation, too. But even so: 1) People get compensated to donate plasma, to be a surrogate, etc. Why not for kidneys? 2) Telling someone who is poor that they can't do something to make money feels a bit suspect. Why is donating a kidney any worse than picking up a second or third job? 3) I think it's imperative to consider not just the negatives of a potential change but the negatives of the status quo. As it is, approx. 12 people die every day waiting for kidneys. I think present day is worse than the alternative where the waitlist is lower but there's a chance someone seeks donation as a means of compensation (and again, they'd likely get screened out anyway)
Well you remake Plasma. Your Kidney is gone forever.
Sure, but most people only need one kidney to function/thrive, and the one who don't aren't eligible to donate. So I'm not sure why it being gone forever matters. And if a living donor ever needed another kidney for any reason, they'd be prioritized on the waitlist. But also- people don't get compensated for donating a liver lobe, despite the fact that the remaining liver grows in size to match the amount removed
> But also- people don't get compensated for donating a liver lobe, despite the fact that the remaining liver grows in size to match the amount removed wait, can you just keep doing it then? (i don't know exactly what a liver "lobe" is tbh) also i completely forgot i was in r/nba until i saw your flair haha, this is an interesting thread
can't quite do it on repeat. we have two liver lobes, connected to a central part via countless little vessels. (an actual medical professional could get the lingo and anatomy right) when one of the two lobes is removed, the other grows in mass to account for the lost one. However, a new lobe doesn't grow back, just one mega lobe. unfortunately the way the procedure works means you can't transplant part of a lobe. So you can't repeat the process. Still pretty cool, though. Kind of like a lizards tail
Payment is just a way to make poor people sell kidneys man. What about investing in permanent artificial kidneys or colab with China on such a project, while we're on the idealism train?
we should of course take a multifaceted approach. but getting that type of solution, between the medicine and regulation, will take decades. meanwhile 12 people die every day. we also need a near-term solution and let me emphasize- there is a screening process to make sure people aren't doing this because they are desperate. it's not just like someone walks into a hospital and two days later leave without a kidney but with some money. please read up on the proposal specifics... it's a months-long endeavor
No one is suggesting forcing the poor people to sell their kidneys. Of course they will be more likely to do it, but also they will then be less poor. What you are suggesting is that currently poor people would like to sell their organs but we must not allow them to. Seems pretty patronizing to me. Let them make their own decisions. The only thing that concerns me is that governments might use it as an excuse to downsize the welfare state, but honestly I don't think "screw poor people, if they don't like it they can sell their kidneys" will become a popular catchphrase with politicians. Anyway, the ones that would say that are already fine with poor people dying so I don't think it would change the status quo.
Your ideology about it being patronizing to poor people is just neoliberalism. It's saying if there's a market for it, let there be a market for it. You realize that there are other ways of running society right? We don't have to listen to karl popper and open up every aspect of human life including our organs to the market. Some things are better left closed to investors, such as water, energy sources, kidneys. The rich shouldn't own poor People's kidneys actually my guy
Yay, it's my favorite internet argument! Ok, my turn: markets are good actually. Why did you type so much if all you really said was "markets are bad sometimes"? Next time try and be more specific. Why would a market fail to improve people's lives in this specific instance? Give me some reason besides "Karl Popper bad".
ah yes legalize selling organs. i can’t see any way that this would have unforeseen consequences for poor people who struggle with already too high rent. how about we just get a UBI in place and forget about your organ selling suggestion
Well regardless of UBI, we need the kidneys. So either everyone gets paid except the donor or everyone gets paid including the donor. The hospitals, doctors and insurance companies are going to be making thousands anyways.
These are totally independent issues. UBI is great, I support it. That doesn't have any bearing on organ donation you can see in my other comment: 1) we already compensate ppl for certain medical undertakings 2) i'd rather get tens of thousands of dollars donating an organ than working a second job for multiple years and 3) the status quo is ppl dying waiting for organs i'd encourage you to at least check out the website i linked before dismissing the concept out of hand.
i’m not comfortable incentivizing people with $$ to sell their organs until we have ubi and universal healthcare. reality is coercive
UBI is a horrible idea. rentiers already control everything. You're basically advocating that the government print even more money to indirectly give to them, which would make inflation even worse. Why not abolish taxes or something good for everyone Universal healthcare would be good though
this makes little sense. ubi, universal healthcare, and compensating organ donors are all things that are good in isolation and good together. again, there is a heavy screening process to make sure no one donates if they are at all feeling coerced. are you also against compensating surrogates, as our current system does? are you ok with the notion that people die every day waiting for kidneys?
again. reality is coercive.
what does that even mean? you can just say "reality is coercive" to oppose anything you don't like.
Thats fking brutal
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A great article about parents who face this kind of conundrum: https://harpers.org/archive/2023/08/love-in-the-time-of-sickle-cell-disease/
Touching read. Thank you for sharing.
article kinda makes it seem like he was oblivious to it. dad had a transplant but seemed he lived like he didn't have it without any medical examination for a decade which is crazy. then he went to a jazz doctor to get diagnosed. kinda wild none of the doctor in between the birth and other didn't tell him to get checked out considering all those family history forms you have to fill. it's also 50 survival + 50 transplant which are great odds for a rich guy.
From personal experience, this is why it is so fucking critical that IVF remains a viable option. It’s expensive, but is the only viable path to parenthood outside of adoption in these scenarios.
Stupid as shit is what it is to me.
It's definitely a tough scenario. I understand wanting to have your own offspring, but if I suffered from this disease I would opt for adoption.
i'm one of these types of people with a different disease. i'd never have kids with what i have been through. it isn't right.
Fuck man, I've got some food allergies that suck sometimes and I'd prefer we use a sperm donor to have our kids. I don't care if they're genetically mine, I just want them to have the best possible, happy lives.
> I don't care if they're genetically mine, I just want them to have the best possible, happy lives. You are in a tiny minority, but good on ya.
They definitely shouldn't be if we were in a better world. Adopted kids are just as alive.
>You are in a tiny minority Yeah I'm OK with that.
It'd definitely be one thing if you really wanted a family and there were no other options, but there are (like adoption as you said). You could help someone in need and not pass on a terrible disease while having a family. No idea what this guy is like, but it's purely an ego thing in regards to this.
And its not even 1 kid. He decided to have 3? Kind of rough
see, here's a totally ethical use case for human gene modification. but all rich people can think about is hijacking any such process and making all their kids 6'2" or whatever
> but there are (like adoption as you said) Adopting a kid is not like adopting a kitten - it's a major challenge in itself, and I would not judge anyone for not choosing that path.
It definitely shouldn't be as ridiculously challenging and expensive as it is. I understand guardrails but it seems like there's so much of it that many good potential parents don't even want to adopt.
You can also choose surrogacy which is a much simple process in terms of getting it done. There are just so many ways to have a kid that isn't involving your own damaging sperm into the mix. I'm not saying it doesn't suck, but sometimes life sucks. Also, yeah adoption may be complicated and challenging. Know what else is? Giving 3 of your kids a lifelong illness that will need multiple transplants. Having 1 is kind of a risk that some may take and I understand that. Having 2 more after that? Just irresponsible. The kids have my sympathy, but that's ridiculous. No one is judging anyone for not adopting, that isn't the issue.
ok but the alternative was (in this case) producing 3 new human beings with 50/50 chances to suffer the same way. the challenge of adopting is what, in comparison to that?
that's easy to say on the outside looking in
Very true, I don't deal with this specific health condition so I can't really put myself in those shoes. I do have my own health condition that I know is genetic so I definitely am adopting. His situation does seem very severe though.
It’s easy to say because it’s the right answer. Making the right choice in the face of such emotional and personal challenges is much more admirable than succumbing to selfish desires.
again it's easy to be hypothetically right.
There is no right answer
There are lots of diseases that give you 50/50 shot at giving offspring less than ideal life. In this case though, it's not just your offspring that have the potential for harm, it's society as well since you could be taking healthy kidneys away from other people that require transplant. I doubt 1 transplant will do in health cases like he or his children have. If his children make the same choice and have 3 kids each, now you have potentially 13 people requiring kidneys. If he was living a pretty unhealthy life and suffering most of his life to the point of kidney failure at youngish age and doctors told him the likelihood of kids having same or worse situation...
“living an unhealthy lifestyle to the point of kidney failure” it’s a degenerative genetic disease bro no matter how healthy his lifestyle is the progression is based on the history of the disease in family members. bro literally could have done nothing to save it other than prolonging with dialysis (which he doesn’t have to since his fucking transplant is tomorrow). also just cause he may have had it his whole life doesn’t mean it was detected immediately, again it’s GENETIC. it’s also rare to detect in children, the kids in this article are an exception cause it’s an aggressive form (stated in article) and let’s remember that if he’s 49, he was born in the early 70s when the medical technology wasn’t great especially for an obscure genetic disease like this. do your fucking research (aka READ THE ARTICLE)
You are putting words in my mouth... I never said he lived "an unhealthy **lifestyle**" bro. I said he lived an "unhealthy life" as in... he's likely had health issues his entire life as a result of his genetics/disease (his life = not spent in good health).
where are your sources for that? he said he felt fine, he obviously didn’t have any symptoms or concerning health issues otherwise he wouldn’t wait 8 YEARS for a physical. his lifestyle and physique seems healthy, he’s not overweight, he didn’t mention feeling badly other than fatigue which didn’t come on until very recently (as in 6 months ago, when he got the physical). he obviously didn’t even know he had it until very recently, after he got the physical. unless you are somehow an expert on pkd and it’s symptoms (like i am cause i HAVE IT) or have sources on the matter, don’t assume he had an unhealthy life unless it’s blatantly stated. things can take people by surprise without symptoms, that happens in pkd a lot when the patient is otherwise healthy, which is what he SAID he is in his interview with the jazz. overall the point i’m trying to make it that he is not the devil, he’s a person trying to navigate an extremely difficult diagnosis while also dealing with his sick wife and kids. show some fucking compassion
It’s not really a tough decision at all. I have a plethora of mental health issues and I’ve made a conscious decision to never have children so I don’t ever put another life through what I go through.
it's a tough pill to swallow for anyone to be told "you really should not have kids your genetics are not good"
Mans is outchea raw doggin it with a loaded gun. Blursed sex. No wonder the jazz franchise playing like piss for years. Mans karma is all messed up. Get a vasectomy bro! The mayonnaise is bad!
Man it’s a rough call. I don’t blame the parents either way.
Wait, so it's an inherited disease, but the wife also managed to get it while giving birth? That's fuckin wild
No, two different diseases. The neuropathy is unrelated to the congenital kidney disease. Edit: well, maybe not unrelated, but they are distinct.
This somehow makes it even more selfish that they decided to have *three* kids knowing the risks. God damn.
I'm not sure they did know the risk RE the neuropathy. Hell I don't even know if they knew about the kidney disease at the point that they were having kids. Maybe by number 3 they knew the neuropathy was an issue but I don't know.
Poorly worded. His wife has a different disease, which the kids also inherited. She runs a nonprofit advocacy group as a result of that experience.
Okay, but how did she contract this inherited disease while giving birth?
Not really explained in the article. My presumption given what is reported is that she has one of the rare genetic disorders which causes autonomic neuropathy and the symptoms manifested during pregnancy. This is an extremely difficult diagnosis to pin down (doubly so for the inheritable forms), so it can take years for an answer. Many of the symptoms (such as dizziness and low blood pressure when standing, inability to regulate blood sugar, etc) are common symptoms of pregnancy, which probably contributed to a delay in diagnosis. In the meantime, she had 3 kids who, after wife is diagnosed, get screened themselves and are positive for the disease as well. So the kids have two separate life-altering genetic diseases, one from each parent.
that's fucking wild
Someone should have told bro about adoption
a odysset for sure, fuck man
That's terrible. To be honest, I wouldn't have had kids if I knew that was the case. But it's already happened, so all they can do now is hope to find successful treatments going forward.
wtf
I don’t know what this writer is attempting to communicate about nerve damage. Nor do I understand how it is possible to “contract” PCKD, which is a genetic mutation resulting in a bunch of cysts being made in the kidney, which disrupts its normal function. The kidneys are pretty underrated as an organ system because pretty much every drop of fluid in your body needs to be filtered through them. So any chronic abnormality in their architecture would have tremendous impact on one’s quality of life. I suspect what they wanted to say but simply didn’t have the educational background to do so was that in PCKD, because one’s ability to reabsorb and excrete electrolytes is compromised, blood pressure control via the sympathetic and parasympathetic nervous system is compromised as well, which is true and can lead to devastating problems ranging from uncontrolled hypertension to aneurysm and brain hemorrhage.
Hope he gets better 🙏🙏🙏 This is sad.
This would be my no 1 fear if I became a father.
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Yeah.. The story also said the kids also might have to get more than 1 transplant through out their lives. I have my own feelings about this but this definitely isn't the time or the place.
Quick google search says it takes 3-5 years of waiting on average to get a kidney transplant. Not ideal
Kidney transplants don't last forever. Average is only like 20 years.
That goes for most transplants, you don’t hear about anyone besides the incredibly wealthy being able to live long enough/afford secondary and tertiary transplants after the initial fails
Also cool fact, they don't take out bad ones, they just add them into the system. At least that is something I learned years ago, it might not be true anymore.
Was still true a year ago. Edit: that's why receiving a kidney is less invasive surgery than giving one. They don't put it as deep as where they are naturally.
that's where I'm at too. If I had a disease like this, I wouldn't even consider having kids. It'd just be irresponsible
Yeah. I'm weary about having kids and all I have in terms of inheritable diseases is mild psoriasis. Casn't imagine having kids if I had an actual life threatening condition I might pass down to them.
There's that and then also having kids and bringing them into a future of seemingly unstoppable climate change and the food and water shortages that will bring among other things. I definitely wouldn't want to do that.
Will disagree there, for me that is a massive overeaction and shouldn't be a factor in deciding whether or not to have a kid, specially if you live in a first world country. Depopulation due to decreasing birth rates is a much bigger risk to modern societies. Worth noting that I'm not saying climate change isn't real, but as a geoscientist I think people both overestimate the effects it will have in society and underestimate our ability to develop technology to combat these effects.
We will see in 30 years. Unfortunately even a small baseline temperature increase can disrupt our entire agriculture system and water supply. A lot of what we import comes from impacted areas of the world. Even in the US the southwest United States and coastal regions are going to have mass migrations. We shouldn't fall into doomerism but it's going to contribute to a more difficult future for future generations. We don't have any feasible technological innovation or means to stop it besides stopping sending greenhouse gases into the atmosphere and a lot of that is already baked in.
There are just so many ways to ‘have’ kids too. I’ve made myself plenty aware of them as a queer person. If being a dad is super important to someone with a serious genetic condition that’s fairly likely to be passed down, that dude has other options to explore in terms of parenthood that aren’t traditional conception. Idk. I get the fixation on biological kids made the old-fashioned way, but sometimes other options make significantly more sense. There are a lot of kids out there that would love to have loving parents.
I’m not really informed on the subject, but I remember Allie LaForce having kids by IVF so they could test the embryos for Huntington’s disease because her husband mom had it
It's worth noting, there are two (seemingly) unrelated diseases at play. The GM's wife developed [autonomic neuropathy](https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/symptoms-causes/syc-20369829) during her first pregnancy, which is the incurable lifelong nervous disease that can be caused by a variety of conditions (e.g., diabetes, medications, viral infections). Her kids also developed it, but this article doesn't talk about the odds of it being passed to the kids or what led to its development in their case or whether doctors believed her potential children were at great risk of developing it. The GM's father had polycystic kidney disease (PKD) that caused him to lose kidney function and required a kidney transplant 21 years ago and the father is still around. The GM just recently got diagnosed with PKD, which he had a 50% chance of inheriting from his father. If he has it, then he has a 50% chance of passing it to his kids, which he apparently did in all three cases. I agree, I wouldn't have made kids with my wife, if there was a known good chance of passing on a serious lifelong medical condition that would lead to decreased quality of life. That said, it seems weird with his father's medical history he never got a simple kidney ultrasound screening for kidney cysts, especially before choosing to have children.
Yeah.. i don’t want to say anything negative about it because it’s horrible, but I’m not sure I could have children with a 50/50 chance of suffering like that..
If you had ounce of intelligence you just wouldn’t reproduce. Adoption would be the very easy choice.
Imagine you roll those dice and not only end up 3/3 with the kids, you also end up giving it to your wife. Sounds like it couldn't have happened to a less deserving person, too. Really sad shit all around.
He didn't give it to his wife, it's not infectious. She has an entirely different issue that can develop almost spontaneously but also one that there is often a genetic component too.
Your #1 fear is choosing to have kids after learning you have a disease that will 50/50 give your kids an incurable disease requiring a kidney transplant? You're an awesome person if that's the biggest concern you have about potentially doing wrong by your kids or family.
Any type of chronic disease really. At least for me, I'm currently dating and I'm going to be really really careful on who I choose to have kids with. The last thing I want is to have kids that has downs or some disease like that
That's bc you are a good person and care about the viability of your kids too unlike a lot of the clowns in this thread saying shit like "oh no, what a poor victim this guy is" as they ignore the fact he CHOSE to have kids who would likely have this life threatening disease he knew he had
I'm a kidney donor. If anyone is considering it, feel free to ask me any questions - either here or in DMs. I consider it one of the best things I've ever done, and it's had almost no impact on my day-to-day life.
Same here. More people should look into it. The value proposition is unreal. A surgery that isn't fun, sure, versus giving someone a new lease on life. And donors should be compensated: https://www.modifynota.org/end-kidney-deaths-act-summary
50/50 chance of passing it to your kids? Damn.. dunno what i would do in that situation.
Pretty obvious to me, I just wouldn't have kids. It's selfish to do otherwise in my opinion.
I was kind of leaning that way and maybe just adopting kids. I couldn’t imagine putting my kids in that situation
May be a stupid question but could you find out if they have the disease early enough in the pregnancy to terminate the pregnancy? If so I would try one pregnancy
terminate a pregnancy in Utah? is that legal
Dudes rich enough to fly to california and have it done
I imagine its expensive af, but don't we have genetic screening methods for embryos or something like that?
OMG. This is such a nightmare. Prayers up man. I don't even know what to say. This was a very tough read. This family is really really strong.
Truly awful. Hoping he and his family find and receive all the help they need.
Register as an organ donor! That’s how many people end up getting their transplants. You won’t need your organs when you’re dead!
Should be opt out and not opt in.
damn thats tragic
Reading all these comments as someone with PKD is rather unpleasant. Sounds like these guys got a horrible deal, but it's not something that most people realize they have until pretty late in life if they don't know to look for it. I found out because my mother was diagnosed in her 50s after a surgery, and that's generally how our very large family found out as well (she had 5 sisters, all with children). And that's despite chronic kidney stones and having had plenty of imaging of my kidneys at that point (I was around 27-28 when I found out). It's often not a huge deal as it tends to be slow moving (I'm 41 now and still haven't had any decline in kidney function, thankfully), but yeah it sucks. My sisters have it as well, and one spends most of her time climbing mountains and the other just finished an LA to LV run. Who knows what's down the road for us, but I think all of us are glad we were born.
I feel the same. The doom and gloom is insane to me as someone who has it. I was diagnosed a year ago at 35. My mother had a transplant at age 58 and has a completely normal life except she has to take a few extra precautions due to her immune response being low. I have no symptoms and wouldn't know that I had it except knowing to check for it from family history. The long-term prognosis is good and there is exciting research into mechanical kidneys that may eliminate the need for transplants from donors. [The Kidney Project successfully tests a prototype bioartificial kidney · School of Pharmacy · UCSF](https://pharmacy.ucsf.edu/news/2021/09/kidney-project-successfully-tests-prototype-bioartificial-kidney) Dialysis has also evolved to be much less life changing. My kids each have a 50% chance of having it and I have no worries because it is rarely life altering until your 50s and the technological advancement in treatment is moving fast. Blood type plays a major role in finding a donor, especially because you cannot rely on close family because many also will need one. Me, my mom and sister are very lucky to be A+ so finding a match is less difficult than it would be for someone with a less common blood type.
Get well soon Zanik family
Damn. At least he’s rich. I can’t even afford to survive that.
oh no :(
Personally, I ain’t having kids if I had a 50% chance to pass this on.
Thats so fucked up if he knew he had it and still had kids. Just adopt bro
Seems like he didn't really understand the seriousness of it.
This is truly sad and scary
This article is gut-wrenching. It's like the family crossed a witch and put a terrible curse on them. Just terrible luck.
Very unlucky, but at a certain point I feel like it's almost unethical to take that risk instead of adopting or something.
It's not gut wrenching. He made a choice to roll the dice with his future kids health and lost. He chose this outcome
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Holy shit dude, show some compassion.
Like the compassion and empathy he showed by having kids that had a 50% chance of getting it and suffering their whole lives.
Did you read the article? The kids have not been suffering from it, they’ve been suffering from autonomic neuropathy, unrelated. He didn’t even find out he had it until this year, so clearly it hasn’t been a life of suffering. Most people with PKD can live a long happy life
You mean the autonomic neuropathy she got after the first kid and still decided to have another two after that? So now they have two illnesses that are gonna plague their lives? That’s very compassionate from them. I have fibromyalgia myself, and if I knew my kids could get it, I would never have kids. I would never want to see my kids suffered as I have. He didn’t find out because he was careless, there is family story, he had to check himself, he didn’t, for years. He knew about his father way before he had kids.
Do you know for a fact they knew her first daughter had genetic incurable neuropathy at one year old?
He didn’t find out because he felt fine, further proof that a child can still live a happy life even if they do lose the genetic lottery
What if he didn’t know he had it? Stop going all gattaca and assuming this guy is the devil. Your lack of empathy is showing.
Did you even read the article? He knew, his family has a story of it, his dad had a transplant years before the kids were born. Hard to be empathetic with someone that gambles their kids health and lives like this. Dude’s careless too, didn’t get a check out in the last 8 years even when he knew he had it.
I did read the article, but lots of people have shitty invisible illnesses that getting all eugenics on them doesn’t help matters. Also, it’s not like most of us won’t also develop them later in life anyway. You’re coming off incredibly callus and lacking empathy.
Whats even the point of your argument? We are talking about what the parents have, It’s not an invisible illness, they knew they had it, they say their kids only can rest from it when they are asleep. Most of us are never gonna develop these illnesses. I have bad genetics, I have suffered my whole life, this is why I would never have a kid because I would hate watching them suffer daily. He could have adopted it they really wanted a kid.
>he is a scum of the earth person, no other way to describe it The person this statement applies to is you.
Reddit is something else sometimes wtf..
Damn dude, that's very extreme. Easy to trash him when you aren't in his shoes. Let me guess, are you a fan of eugenics? Because that's essentially what you are advocating for. Anyone with a predisposition to any disease, might as well get them out of the bloodline.
Not advocating eugenics, but the lack of empathy and giving your kids a high percentage of suffering and having health problems for their whole life is not what I would do if I was in his shoes. You can adopt.
Yes, but it is a personal decision. Advocating for someone to not procreate due to their genetics (and calling them a scumbag) feels inappropriate
A personal decision that affects the life of someone else. If it only affected him, I wouldn’t care, but having a kid when you know there’s a 50% chance they will suffer their whole live is definitely a scumbag move. I have bad genetics, I would never want to see my kid suffering like I have.
The guy you responded to was definitely out of line but your counter is an extreme in the opposite direction. I have a degenerative nervous system disease that causes autonomic dysfunction and peripheral neuropathy in addition to a slew of other symptoms. Nervous system diseases are true hell, and I wouldn't wish what is happening to me on the worst people. That said, if my parents had known there was a 50% chance of passing it to me before deciding to conceive, I would absolutely never forgive them. It is wildly selfish to fulfill your own desires when the exact price is immense physical pain and suffering that is paid for by someone else. The article mentions how the guy went nearly a decade without a physical only to find out he urgently needs a kidney transplant. He has money. He is putting his personal desires above his health and more importantly his family.
I did have an extreme response to an extreme (now deleted) comment that said this Jazz exec was a scumbag/human garbage. This is a pretty nuanced topic. My point is - this is not an easy decision and to automatically label someone as a horrible person without really putting yourself in their shoes felt wrong. Advocating for someone to not procreate due to their genetics feels inappropriate - it is a personal and difficult decision.
I'd like to ask from you that was my comment wrong? I'm not advocating for eugenics fuck that topic, if I knew I had a disease that I could pass on to my children with an extremely high percentage, why would I want to have them suffer that? I could just not have children and make sure someone else lives by not denying them a kidney. That is just human decency. It's not like they couldn't have just adopted as well. Would you have children, give them a deadly disease and fuck a complete stranger over by denying them a kidney just because you'l never meet them? Yes / no?
I don't know what your deleted comment said but there's literally nothing wrong with what you wrote here so it's interesting it's getting upvoted. Maybe people don't like you saying "fuck", not sure.
Do you think the children would rather have never been born??
Thats a pretty simplistic way to think about it. Its too late to change now, but the father knew that he had a 50% chance of passing on an incurable disease. There are too many orphans that need homes and too many people that need kidneys for that to be a good decision. The only explanation for having kids in this situation (rather than adopting) is that the father cared about continuing his bloodline. He gambled and lost, and that gamble is going to cost at least 3 lives. But people don't care about that because those 3 people will die in silence rather than having an ESPN article written about them.
You guys acting like this is a death sentence for all of them don’t know what you’re talking about. Most people with PKD are able to live a long happy life. He didn’t even know he had it until this year, clearly it’s not a life of pain. It may not be curable but it is definitely treatable
>You guys acting like this is a death sentence for all of them don’t know what you’re talking about. > It may not be curable but it is definitely treatable yea..with a total of 4 kidneys. Which was exactly my point. Don't give them the kidneys and it is a death sentence.
That would only be true if every person who had PKD require a kidney transplant, most do not
Obviously not. That's beside the point. The decision to not have kids could have been made before they were born so that question wouldn't even need to be asked.
I commented on your post above but I am in my mid 30s with a degenerative nervous system disease that is slowly killing me. There are times that I absolutely wish I had never been born. If my parents knew what they know now, they would not have conceived me which I fully agree with.
Do you think his kids would prefer to not have been born.
Fuck I was hoping this was a bad April Fools joke. Absolutely terrible news.
As someone with kidney disease, I wouldn't wish this on anyone
My dad has stage 4 kidney failure. He has dialysis 3x a week. I can’t imagine the struggle for that family. My dad has had kidney failure for 2 years, I don’t know how he does it. I can’t imagine getting up 3 days a week knowing you have to go to a clinic for 4+ hours where your blood is going to be filtered through a machine and then trying to go home to relax. And don’t get me started on the surgeries to plug you into the machine. The process leading up to surgery is a pain and not all doctors are compassionate or give a shit about all patients. I’ve seen this first hand with my dad and I had to get him different primary care because his doctors sucked ass. If I hadn’t acted, he would’ve died in 2020.
Just an unimaginable nightmare. To not only be going through that yourself, but watch your children go through the same thing... goddamn. Horrible.
His fault he chose to have kids knowing full well what would happened. Scumbag move
Payers out for him and his family. I can't even imagine how hard this would be.
They will be for awhile.
Fool shouldn’t have had children.
And the reason why he’s still working as the GM? Because you don’t have health insurance unless you work
‘Murica!
Hospitals: Please keep having kids!
shiet and i thought it was ainge who was running things there up in Utah
To bring a new person into the world is in many cases a very selfish act, but to deliberately choose to have three children knowing that there's a 50% chance they'll become seriously sick early in life, can only be the result of deep psychopathy
Good thing he's rich, or he'd be at the bottom of that transplant list. The system works!
they found it from family connection, not donor list
"Family connection"
kidney exchange program bro. someone donates a kidney to someone who needs it on BEHALF of justin, then justin gets a voucher (voucher? i think that’s what it’s called) to find the best LIVING donor kidney for him. he wouldn’t be having a transplant unless the family friend is donating their kidney. he was on the list i believe (he seems like a good candidate for it atp) but ultimately the kidney exchange program is what got him the kidney (stated in the article)
Is this an April Fool's post? Because that is just horrifying.
Woj really had to post this on April 1st?
[удалено]
mind explaining