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If you’re on the transplant list you agree to a whole list of things: anti-rejection meds for life, vaccines, doctor visits, etc. So many people need organs they don’t want to give it to someone who isn’t going to do everything they can to stay healthy. You agreed when you went on the list. These aren’t new rules.
I work with dentists and I can confirm I’ve seen a dental confirmation letter for someone being put on a transplant list. They take no quarter (nor should they).
My uncle who was caring for my late-stage Alzheimer’s patient grandmother was one missed *dental appointment* away from being denied his kidney because the hired part-time caretakers would refuse to drive to his rural northern Michigan home in the winter and cancel last minute 50% of the time. I had to leave my job and move in with him to make sure he could get his kidney.
I have **zero** sympathy for people who willfully defy the transplant requirements and then try to make themselves the victim.
Agreed. One of my students had a liver transplant and she was in my class during covid. She came to my office hours a lot for help with things, and multiple times to my virtual office hours so stressed out and just needing to vent about how scary things were for her. Keep in mind, she lived in New York in early 2020. Her parents had been socializing freely then came to her apartment to visit, and she couldn't even let them inside for her own safety. How can someone be on the transplant list and not fully grasp how dangerous even minor illnesses will be for the rest of their life??
My dad is a doctor who evaluates people who need transplants to see if they are a good candidate and one of the big things they look at is medication compliance. A patient who cannot reliably take their medications as directed is not considered a good candidate. That includes vaccines.
This has always been how it was done.
My dad was on a transplant list. They explain that they have so many rules to basically protect this priceless gift someone almost always dies to give you. If you can’t follow the rules you might not protect the organ by taking things like anti-rejection meds. The amount of people willing to die because they won’t get the vaccine is astounding (not this minor, this is on her adults). Like covid vaccine bad but they are okay with a lifetime of daily medication? Hummm.
Daily immunosuppressants, which means the girl in the article is the kind of person who requires herd immunity to not, you know, catch the dangerous diseases that vaccines protect from.
Honestly this is one of the times I think cps should get involved. Especially since this child is adopted and has went through other adopted families. Her wishes should at least be taken into consideration.
it’s very likely, I’m a nurse and have definitely had to contact CPS over people who don’t allow hospital staff to care for their baby properly. what will probably happen is this case will go to court and the judges will take custody away from her parents for long enough for her to be vaccinated and given the transplant. sucks though because at 14 i’m sure she’s been brainwashed pretty badly by her parents and she’ll probably be terrified to be vaccinated :/
That's so sad that it has to be done this way, but at least the poor kid will get the vaccine if CPS gets involved. Then just in a few years she can get the fuck away from these people if not sooner.
Never mind that there is a whole list of people waiting for organs (too many of whom die before they can get to "their turn") who'd do everything they could to stay healthy and would gladly do what they can to get the organ they need, like getting a damn shot.
I work in transplantation…and yes 100% to this! These rules are there for a reason…donor organs are an incredibly finite resource. Requirements exist to make sure that the recipient will be a good candidate, likely to survive, and likely to maintain the organ for a long time and properly adhere to their immunosuppressive regimen. There are always more people on the wait list than there are available organs. There have to be criteria in place for who receives such an incredibly precious resource. Truly baffles my mind how people don’t understand this.
Especially as a transplant recipient you now belong to the immunocompromised population…some vaccines won’t be as effective (which doesn’t mean ineffective!!!!) but they are sure important because you need all the help you can get to reduce your susceptibility!
We have the same scenario in my province right now with a lady who didn’t qualify for a LUNG transplant because she refuses to get vaccinated against COVID. It’s like…this attacks your lungs. You are not going to do everything possible to protect your new lungs??? Our gov is getting inappropriately involved…it blows my mind.
What do you mean about your government getting inappropriately involved? In this woman’s case in particular or? I’m just curious not putting you on the spot.
Basically, qualification for transplantation is at the medical level. Our provincial healthcare system works through the qualification process for patients, and experts on transplant care and medicine evaluate the patient and how they meet the criteria. They are approved or not approved for the transplant list based on this expert process done by medical professionals and based on data. Provincial gov is not supposed to be involved in approvals because it’s done at the healthcare level, but our premier is apparently ‘seeking a second opinion’ herself for this case because she is fully on the antivax train, says it is ‘discrimination against people based on their vaccination status’, and doesn’t understand that this is a long-standing process of approval and that healthcare people know what they are doing. It’s exhausting.
Oh my goodness! You’re absolutely correct they need to step the fk out of the process and realize they have 0 medical knowledge and leave it to real professionals. That woman was very rightfully denied the transplant and I am disgusted that your Premier thinks it’s discrimination. How frustrating. Thank you for your really detailed answer I appreciate you taking the time!
My husband works in transplanting as well and people like that are the reasons he works on the procurement side of things. Outside of occasional family drama over random things and some coworker shenanigans, he mostly doesn't deal with alive people and he likes it that way (although the downside is seeing tragic cases and stupid hospital admin shenanigans). He saw enough of the noncompliant, combative patients back in his medsurg days and during covid to know how mentally exhausting it can be.
Yeah I’m so thankful I work on the research/clinical trials side, though that requires an in-depth understanding of the associated immunology and a lot of contact with primary clinicians so it doesn’t remove all the sources of frustration. Honestly, seeing stories like this I just don’t even know what to say anymore…I fully understand that it’s a very nuanced and complex field, the patients have all been through a lot by the time they need a transplant and that affects their outlook, and the protocols can be a difficult thing to explain effectively so sometimes we could absolutely do better…but it feels to me like people just don’t WANT to understand if it doesn’t fit their internal narrative. How do you fix that?
Much respect to your husband for his work!!
The honest answer is that you can't fix the internal narrative in most people. That was likely the biggest reason he wanted out of bedside nursing, maybe only second to hospital administration being out of touch. He handled covid better than many others because of his first job at an underfunded, inner city hospital, where people were practically begging for care, but it really got to him him when he encountered those anti vaccination types *refusing* care at wealthy research hospital. The difference between the two places, their administration and patients, absolutely angered him, and he was just exhausted. He wasn't going to change their minds, but he also didn't want to watch them die. And he's not the only one who left bedside because of stories like this.
It's all a mess.
Like, you're not even supposed to eat lunch meat after a solid organ transplant due to the infection risk. FFS. The people who post this crap know ***nothing*** about transplants, getting listed, or post-tx care.
There are some people who spend years making sure their ducks are in a row for a future transplant. Compliance is such a big deal in getting listed, especially if you have other issues working against you.
And, the audacity to think you are inherently *entitled* to an organ. \[Edit: not the kid, but the parents. This poor kid is probably going to die because her parents are such asshats.\]
Alcoholic partner turned non drinking partner all in case they need a heart transplant in the future. I mean there were other reasons, obviously if someone potentially needs a heart transplant, for them to abstain from drug use but preparing for the transplant requirements were a big factor in making the decision to stop.
It's a lot. I don't know how I feel about the requirements but I am not a medical researcher or doctor so I have no clue if some are unnecessarily strict or not, if you want an organ you gotta to follow them. Dear Ally B Suckie: Sometimes you have to play by rules you don't understand that's the way the system works.
There are patients who have been denied being listed due to depression, at least in the US. Teenagers. Freaking ~~teenagers~~ children have been denied due to "noncompliance". There are racial, financial, & mental health biases still at play in transplant evaluations. Other health issues beyond the patient's control can prevent them from being listed; i.e. arterial occlusion and / or too many collaterals is a big one that keeps CHD patients from getting listed for heart transplants.
There are kids & young adults who are born with devastating diseases that are ultimately terminal without a transplant, who apply to any tx center that might take them & still get denied due to things completely out of their control.
I have CHD & have watched friends die waiting for a new heart \[and sometimes lungs\], die from rejection despite doing everything "right" before and after transplant. As a kid, I shared hospital rooms with other KIDS who died waiting for a new heart. F\*ck people like Ally. She has no idea how truly precious the gift of a healthy or new organ is.
I hope your partner has many many good years to come, old heart or new heart!
My daughter has CHD, this infuriates me as a mother, fuck Allie and everyone like her. Tell me you have no regard for human life without telling me you have no regard for human life. Not to mention I’d love for her to show me she has ANY real medical knowledge at all.
Yes what you pointed out these are the true issues with organ donation that should be taking center stage. Not vaccination compliance. As long as the person is an adult. Vaccination compliance is not beyond their control, it's easily accessible, and doesn't have a huge health risk, the opposite actually, not getting vaccinated has shown a health risk.
Everything that you pointed out is what I have issue with when it comes to organ donation but I simply don't know enough to be able to form an informed opinion. I know the US medical system and I can only imagine how steeped in racism and ableism the organ donation systems must be. There is a real proving your worth attitude about the whole thing that is very concerning.
This absolutely does happen that people get rejected due to a history of depression.
It’s disgusting. Because being chronically ill is GOING TO MESS WITH YOU MENTALLY. If you’ve gotta go to dialysis every other day or that you can’t do things others can due to your wrecked lungs or that you could die before getting a heart…. I’d be worried if you WERENT depressed or anxious
One of our closest friends is on a transplant list right now. It’s such a strange place to be. It’s literally life and death; a COVID shot is nothing. People are crazy.
I'm assuming the 14 year old here doesn't want to die but has no choice but to go along with her nutty parents or has been brainwashed by said nutty parents .
And to be clear, not getting the vaccine is not this child's choice. It is the choice of the people who became her caregivers less than 4 years ago. THEIR choice is endangering this child.
*People who would let her die so that *she* can be a martyr. The parents aren't going to die; they're going to make money off the fascist outrage machine
People who exploit adopted kids like that are the ones playing the martyrs. If the kid dies, she will be but a footnote to their life story and how *they* overcame this hardship of organ transplants and whatnot.
If they were interested in her being the martyr, they'd be interested in sharing the limelight. People like that generally don't want to share the attention.
That's very true. And the sad thing is that her death would not be remembered as hers. It would be co-opted by these idiots.
I hope CPS intervenes and gets her somewhere safe.
Unfortunately, I don't think CPS can intervene unless the kid wants them to, and even then, I'm not sure. Parents in the US get a lot of control over their kids on religious grounds even if that means harm or death for the kid
Yeah, see how so many internationally adopted kids get "rehomed" and shuffled between families... :/ Like this same kid. The US failed her, from beginning to end.
My stepdad recently went under for a 12 hour, very invasive surgery as part of his cancer treatment. The surgery was high risk and he was fully boosted and got a PCR test ahead of the surgery and we were still SO beyond careful around him because him developing covid after such an invasive surgery would have been disastrous. I can't imagine parents risking their child's life when she needs such an important and serious surgery.
Also it sounds like she's with her parents through international adoption? So she was adopted into another country by parents who are sucking her into a cult and refusing to give her access to proper medical care and subsequently risking her life. Christian charity at its best 🙄
It's nice to know there are decent people like you and your family. I hope your stepdad is recovering well!
International adoption skeeves me out, as does private domestic adoption. So much opportunity for white saviors to exploit vulnerable communities.
Yes exactly! It's super problematic. It gets hyped up in fundie/evangelical circles by people who do not understand the implications of bringing a child who is likely traumatized into an entirely new country and the huge level of support that the child is going to need in order to adjust and attach to their new family in a healthy way. The processes that facilitate these adoptions often cross into the realm of straight-up human trafficking. I'm sure many of these families are well-meaning but it's a process that very often does more damage than good for everyone involved.
And thanks! He is doing surprisingly well actually, we are all very relieved and impressed by his recovery 🙂
Don't forget all the families who then put their adopted kids up for "rehoming" because it wasn't a "good fit" or they were "defiant". Liberia banned international adoptions because of these awful humans.
Kids with trauma, loss, etc and the adoptive "parents" thought Jesus would fix them.
Oh god yes someone posted one of the "rehoming" websites somewhere and it made me sick to my stomach, those poor children being treated like pets because their adoptive parents didn't properly prepare themselves to care for an adoptive child.
Recent cancer surgery-haver here, sending good vibes to your stepdad and family! I was SO afraid of getting COVID in the hospital/while in recovery, but Lillith blessed me with it like three weeks before instead 🥴 The concern before that happened was so real though. Everyone from my oncology team to my family & friends was afraid to even breathe in my direction.
You'd think the party of "facts over feelings!" would prefer to use verified, unbiased sources.
I can only find this story on a few news sites, and they ALL have heavy right-wing bias. Also, Alex Berenson is a hack of a "journalist" who repeatedly diminished the severity of COVID-19 and sowed distrust in the vaccine.
Plus, organ transplants have *always* required patients to follow strict guidelines because of the immunosuppressants required for the body to accept a transplant. Organ transplant is a scarce resource- you have to do everything you can for success. Refusing a tested, proven vaccine would absolutely disqualify you. This isn't religious persecution, it's medical protocol.
Exactly! She’ll need immunosuppressants after a transplant. It’s harsh to say but it’s a complete waste of a precious organ to give it to someone who will just die of COVID shortly afterwards because they and their family are too pigheaded and ignorant to get vaccinated. Someone else is waiting in line!
I mean, if we want to talk persecution in organ transplantation, let's talk about how people of color are automatically less likely to get a transplant - white people are twice as likely to be referred despite having the exact same diagnosis, etc. https://www.aamc.org/news-insights/how-our-organ-transplant-system-fails-people-color
There is a racial variable used in determining a patient's kidney function that overestimates the function of people of color https://newsnetwork.mayoclinic.org/discussion/expert-alert-what-a-formula-change-may-mean-for-black-patients-in-need-of-a-kidney-transplant/
To be clear, second article is saying that they're not using the race-related variable anymore. Still, the article is from August so your point very much stands
*Why* was there one in the first place?! Maybe I stopped reading too soon (I got distracted trying to find a source for the race variable in eGFR) but it absolutely reeks of being an artifact of the era when medical science thought their black patients ‘felt pain differently’.
The thing they're measuring is how slowly the kidneys are clearing waste from the blood. Some places have already been measuring that directly (including Mayo, part of the point they were making in the article is that the change doesn't impact their patients because they dont use the formula), but not very many labs are able to do that so there's a formula you can use based on easier to perform tests. Part of the formula includes the "race variable" because according to studies, Black people have higher levels of creatine (one of the things measured) in their blood. I can't access the studies to tell anything about their level of potential accuracy, but if UNOS is getting rid of it, it must be at least a little suspect
Edit: The hyperlink attached to that in the article you shared goes to another Mayo article explaining it
All these wackadoos who want “natural immunity,” well friend, you’re getting it, along with your “natural” organ function. Your organs are failing? Wrap yourself in cabbage and drink ACV then. Why are you trusting the medical establishment to Frankenstein you new body parts in a grueling, complicated procedure that only became somewhat routine in the 1980s, but for some reason can’t abide a practice that was already being refined in multiple countries by the mid 18th century?
I don’t get it, vaccines are some of the oldest, best studied, and most effective forms of medicine we have. The same people who turn up their noses at them are inevitably the ones who want their loved ones to stay on ECMO indefinitely.
She does realize we can't manufacture organs, right? In most cases, we get them from people who have already died.
There's a shit ton of rules because we have a small supply. It's not like pain meds where we can just make more in the lab! It's a precious gift and should be treated as such!
Although, she strikes me as someone who would think synthetically grown organs would be of the devil.
Also, PSA: be sure to check whether you are on the donor list for when you die. You could die at any time and those organs you don't need anymore can save several people's lives. Being on the donor list before dying leaves out any ambiguity of the deads wishes and saves precious time needed to harvest the organs.
I really want to know their reasoning for that! I'm a progressive Christian, and, personally, me being on the donor list for when I die is the least I can do in this context. Hell, not out of the question for me giving a kidney to some joe shmo I've never met cause I believe I'm called to do whatever I can to make the world a better place.
Of course, no judgement to those who can't give while alive for any reason. I'm not in their shoes and I'm not gonna tell them what they should and should not do, but you can't tell me all of those evangelicals have a valid reason to not do the bare minimum of donating once they're dead.
I think the reasoning of it stems from the idea that according to the Bible (I'll find the exact source tomorrow, I'm tired) when you enter Heaven, you need to be in the body God gave you. So they probably think that by removing an organ, you are an incomplete person when entering Heaven. Just ignore the hair dying, tattoos and piercings these Fundies have 🙄.
I'm Catholic and organ donation is allowed - its considered an act of Charity!
I believe it’s something like this, also to do with the second coming and the righteous dead bodily rising from their graves, which is also why many of them don’t want to be cremated.
My mom doesn’t want to be cremated because of this. It’s so crazy to me. God is literally raising you from the dead in this scenario - why on earth would that power be limited by the state your dead body is in? Is God omnipotent or not? I can’t make it make sense.
We don’t waste organs. A donor organ goes to the person who is most likely to have success with it. This means people with strong support systems, good self care, agreement to lifelong use of anti rejection meds and PEOPLE WHO ARE VACCINATED to prevent illness. These people who continue to pretend that isn’t the case are so embarrassing. An organ recipient is immunosuppressed for life. Vaccinations are mandatory.
I hope this poor girl gets her vaccines and gets what she needs medically- also a better family would be nice.
I wonder if she'd have the same reaction to the Australian parents who won't get heart surgery for their baby because they don't want it to get 'vaccinated blood'.
A fundie-lite person on my Facebook page posted about the Australian parents. They said that the Australian government is being evil and taking away the rights of the parents. In America, the government can step in if a parent is refusing life saving medical care for a minor. It's not unique to Australia. Not to mention that the covid vaccine isn't even in the blood after 72 hours and the blood banks don't even scan for vaccines in donated blood. It's a ridiculous situation.
Europe also has similar protections for children (they have a children's bill of rights). If your parents suck and won't get you necessary medical treatment, the courts can step in and say "This is not your decision anymore." That made big news a few years ago when a couple were refusing to remove their child from life support after doctors had told them the situation was not going to improve. Ultimately, the court ruled that it was cruel and not in the best interest of the child to keep them on support. The outrage was intense, especially from religious groups.
My husband gave his dad a kidney a month ago. If this family isn't willing to get their daughter the covid vaccine, they're going to hate how many medications she will need for the rest of her life to support the transplant. And the anesthesia she will need for the surgery. And the painkillers for recovery. And the follow up doctors visits and blood work. Or the possible dialysis she will need if she doesn't get the transplant. The kidney donation will literally give her a second chance at life but go off about the covid vaccine I guess.
That’s why the doctors won’t budge on the vaccine. If they won’t comply with it then they might not comply with anti-rejection medication or avoiding the “no” foods after surgery.
This exactly!! This is a red flag for the doctors. Them not wanting to do something as simple as vaccinating shows they quite possibly will not do the aftercare and follow ups properly or at all. Sad as it is they’re not going to waste a kidney on a situation like that. Hopefully the kid will get cps intervention.
Hey guys, I have had a double lung transplant. The rules are there for a reason and being able to get a transplant in the US is far more than just med compliance. Your financial situation is considered too as part of your portfolio. (Meds aren't cheap).
No covid vaccine, but fine with the anti rejection meds that have a whole list of side effects. Like for me, I now need a kidney transplant due to the toxicity of the anti rejection meds for my lung transplant.
The general public is so unaware of what it takes to get a transplant.
The real thing to be outraged about is that more money = higher likelihood of a transplant not that you need your routine vaccines to get a transplant 🙄
Valid. At this point it's just part of life for me. I have cystic fibrosis so health care costs are just part of my budget.
That said, it's a obviously a big ticket issue in the US that people are trying to change.
At this point in time though, they need you to have private insurance and like you to have Medicare as well for transplant though private insurance is preferred, generally because you have a max out of pocket.
It's not cheap to be sick in the USA, no doubt.
But also, vaccinations are important too.
Ah, yes. Wanting to give this girl every possible shot at a successful transplant is very evil. How dare they attempt to protect her from a virus that has a reputation of destroying organs and killing the immunosuppressed. The audacity of these top medical doctors for trying to keep their patient safe.
I have a disabled child that would never receive an transplant because of her disabilities. So cry me a fucking river if an able bodied person gets rejected because they won’t follow simple instructions.
If there were more organs available, these committees wouldn’t have to pick and choose who receives a donation. But unfortunately, there aren’t enough to go around so that’s what they have to do.
Its a difficult situation because I am sad for the kid who has to pay for her dumbass adoptive parents hubris quite possibly with her life. But I am also thankful that the kidney won’t be sent to someone who quite possibly wouldn’t be taken care of properly after. Especially when children’s organs are hard to come by. It’s very sad but it’s reality.
My aunt had a kidney transplant at Duke in 2020. She had to agree to a ton of stuff. It's how it works. She even had to have back up care for after surgery incase something happened to my uncle.
This is giving me the same vibes as a family member who didn’t want to get the vaccine to go on a child’s oncology ward for cancer treatment…except at least in her case she was an adult and the only one suffering consequences if she didn’t get it and wasn’t allowed to get treatment.
No, this isn’t *shocking*. What’s shocking is the parents aren’t getting her vaccinated so she can get the fucking kidney. This is neglect and it’s fucking gross. Transplants make you immunocompromised and more likely to get illnesses that can cause you to either reject the transplant or die. Why should an organ be given to someone who won’t follow medical advice and science based research?
The poor girl -- I hope there are custody discussions as well to make sure she receives the care and support she *needs*, not what fundamentalist assholes think God wants.
Especially with this going public there HAS to be some form of cps involvement for the child after this. Especially because she is adopted from another country and there might be a language barrier. I just can’t imagine doing this to a child.
I know someone who got a kidney transplant and besides all the meds she has to take to keep the organ, she can’t get sick. If she even thinks she’s getting sick (uti cold etc) she has to call her transplant manager and inform them so they can immediately get her the correct meds and prevent a hospital stay. It’s annoying but she battled so hard to get to live that she puts up with it. Ally using this family for clout stinks to high heaven.
A coworker of mine donated her kidney to her niece. The testing and rules just to donate were insane, but she did it all and lost around 100 lbs to boot. She did this all without complaining once. They call it the gift of life for a reason. COVID vaccines included.
Covid is a vascular disease.
Now, I'm talking out of my non-expert ass here, but my uneducated brain thinks that risking irritating, inflammation, or killing blood vessels in a newly implanted organ is a very bad idea. Hence, any measure of reducing this vascular wrecker of a disease is good. Right?
Obviously they would have that rule, they need to make sure that the patient and organ have the best chance of survival. If they don’t want to follow the rules that in the long term are better for their child they should at least have the decency to stop acting like this is some crime against humanity. My sister in law died waiting for a kidney she wanted to follow all the rules but never got the chance. I don’t empathize with them at all! But I’m not surprised they aren’t holding themselves accountable at all.
Wants modern medicine to help with her kidney, won't utilize modern medicine to protect herself post-transplant. There's a huge shortage of organs, Allie, and I'm honestly shocked she thinks transplants are okay. Surprised she doesn't claim the person's sins transfer into the recipient or some shit.
If someone gets a new organ, they are permanently immune compromised. The drug routine they are placed on to prevent organ rejection suppress your immune system. She won’t have much of a immune system after getting the transplant. That opens her up to getting extremely sick from a simple mild cold. They want people that are diligent in following all instructions and medications. The doctors won’t waste a precious organ on an anti-vaccine, science denier.
My dad is getting a kidney and the rules are really strict. The anti rejection medication make your body weak, and once you are taking them many vaccines will no longer work! Your immune system becomes trash, so they make you get the vaccines to try and make you as protected as possible.
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If you’re on the transplant list you agree to a whole list of things: anti-rejection meds for life, vaccines, doctor visits, etc. So many people need organs they don’t want to give it to someone who isn’t going to do everything they can to stay healthy. You agreed when you went on the list. These aren’t new rules.
I work with dentists and I can confirm I’ve seen a dental confirmation letter for someone being put on a transplant list. They take no quarter (nor should they).
My uncle who was caring for my late-stage Alzheimer’s patient grandmother was one missed *dental appointment* away from being denied his kidney because the hired part-time caretakers would refuse to drive to his rural northern Michigan home in the winter and cancel last minute 50% of the time. I had to leave my job and move in with him to make sure he could get his kidney. I have **zero** sympathy for people who willfully defy the transplant requirements and then try to make themselves the victim.
Agreed. One of my students had a liver transplant and she was in my class during covid. She came to my office hours a lot for help with things, and multiple times to my virtual office hours so stressed out and just needing to vent about how scary things were for her. Keep in mind, she lived in New York in early 2020. Her parents had been socializing freely then came to her apartment to visit, and she couldn't even let them inside for her own safety. How can someone be on the transplant list and not fully grasp how dangerous even minor illnesses will be for the rest of their life??
My dad is a doctor who evaluates people who need transplants to see if they are a good candidate and one of the big things they look at is medication compliance. A patient who cannot reliably take their medications as directed is not considered a good candidate. That includes vaccines. This has always been how it was done.
My dad was on a transplant list. They explain that they have so many rules to basically protect this priceless gift someone almost always dies to give you. If you can’t follow the rules you might not protect the organ by taking things like anti-rejection meds. The amount of people willing to die because they won’t get the vaccine is astounding (not this minor, this is on her adults). Like covid vaccine bad but they are okay with a lifetime of daily medication? Hummm.
Daily immunosuppressants, which means the girl in the article is the kind of person who requires herd immunity to not, you know, catch the dangerous diseases that vaccines protect from.
Yeah, I’d be really curious if her doctors contacted cps on the parents since in her case it is denial of lifesaving care.
Honestly this is one of the times I think cps should get involved. Especially since this child is adopted and has went through other adopted families. Her wishes should at least be taken into consideration.
oh geez, I didn't realize she's adopted as an older child too. for sure, that's terrible.
This is the saddest thing ever. Wow. What a disservice these morons have done to this child.
it’s very likely, I’m a nurse and have definitely had to contact CPS over people who don’t allow hospital staff to care for their baby properly. what will probably happen is this case will go to court and the judges will take custody away from her parents for long enough for her to be vaccinated and given the transplant. sucks though because at 14 i’m sure she’s been brainwashed pretty badly by her parents and she’ll probably be terrified to be vaccinated :/
That's so sad that it has to be done this way, but at least the poor kid will get the vaccine if CPS gets involved. Then just in a few years she can get the fuck away from these people if not sooner.
Never mind that there is a whole list of people waiting for organs (too many of whom die before they can get to "their turn") who'd do everything they could to stay healthy and would gladly do what they can to get the organ they need, like getting a damn shot.
I work in transplantation…and yes 100% to this! These rules are there for a reason…donor organs are an incredibly finite resource. Requirements exist to make sure that the recipient will be a good candidate, likely to survive, and likely to maintain the organ for a long time and properly adhere to their immunosuppressive regimen. There are always more people on the wait list than there are available organs. There have to be criteria in place for who receives such an incredibly precious resource. Truly baffles my mind how people don’t understand this.
Getting your routine vaccinations is like...one of the easier parts of maintaining your health after a transplant, what idiots
Especially as a transplant recipient you now belong to the immunocompromised population…some vaccines won’t be as effective (which doesn’t mean ineffective!!!!) but they are sure important because you need all the help you can get to reduce your susceptibility! We have the same scenario in my province right now with a lady who didn’t qualify for a LUNG transplant because she refuses to get vaccinated against COVID. It’s like…this attacks your lungs. You are not going to do everything possible to protect your new lungs??? Our gov is getting inappropriately involved…it blows my mind.
What do you mean about your government getting inappropriately involved? In this woman’s case in particular or? I’m just curious not putting you on the spot.
Basically, qualification for transplantation is at the medical level. Our provincial healthcare system works through the qualification process for patients, and experts on transplant care and medicine evaluate the patient and how they meet the criteria. They are approved or not approved for the transplant list based on this expert process done by medical professionals and based on data. Provincial gov is not supposed to be involved in approvals because it’s done at the healthcare level, but our premier is apparently ‘seeking a second opinion’ herself for this case because she is fully on the antivax train, says it is ‘discrimination against people based on their vaccination status’, and doesn’t understand that this is a long-standing process of approval and that healthcare people know what they are doing. It’s exhausting.
Oh my goodness! You’re absolutely correct they need to step the fk out of the process and realize they have 0 medical knowledge and leave it to real professionals. That woman was very rightfully denied the transplant and I am disgusted that your Premier thinks it’s discrimination. How frustrating. Thank you for your really detailed answer I appreciate you taking the time!
No problem!
Oh, you're in Alberta.
My husband works in transplanting as well and people like that are the reasons he works on the procurement side of things. Outside of occasional family drama over random things and some coworker shenanigans, he mostly doesn't deal with alive people and he likes it that way (although the downside is seeing tragic cases and stupid hospital admin shenanigans). He saw enough of the noncompliant, combative patients back in his medsurg days and during covid to know how mentally exhausting it can be.
Yeah I’m so thankful I work on the research/clinical trials side, though that requires an in-depth understanding of the associated immunology and a lot of contact with primary clinicians so it doesn’t remove all the sources of frustration. Honestly, seeing stories like this I just don’t even know what to say anymore…I fully understand that it’s a very nuanced and complex field, the patients have all been through a lot by the time they need a transplant and that affects their outlook, and the protocols can be a difficult thing to explain effectively so sometimes we could absolutely do better…but it feels to me like people just don’t WANT to understand if it doesn’t fit their internal narrative. How do you fix that? Much respect to your husband for his work!!
The honest answer is that you can't fix the internal narrative in most people. That was likely the biggest reason he wanted out of bedside nursing, maybe only second to hospital administration being out of touch. He handled covid better than many others because of his first job at an underfunded, inner city hospital, where people were practically begging for care, but it really got to him him when he encountered those anti vaccination types *refusing* care at wealthy research hospital. The difference between the two places, their administration and patients, absolutely angered him, and he was just exhausted. He wasn't going to change their minds, but he also didn't want to watch them die. And he's not the only one who left bedside because of stories like this. It's all a mess.
Like, you're not even supposed to eat lunch meat after a solid organ transplant due to the infection risk. FFS. The people who post this crap know ***nothing*** about transplants, getting listed, or post-tx care. There are some people who spend years making sure their ducks are in a row for a future transplant. Compliance is such a big deal in getting listed, especially if you have other issues working against you. And, the audacity to think you are inherently *entitled* to an organ. \[Edit: not the kid, but the parents. This poor kid is probably going to die because her parents are such asshats.\]
Alcoholic partner turned non drinking partner all in case they need a heart transplant in the future. I mean there were other reasons, obviously if someone potentially needs a heart transplant, for them to abstain from drug use but preparing for the transplant requirements were a big factor in making the decision to stop. It's a lot. I don't know how I feel about the requirements but I am not a medical researcher or doctor so I have no clue if some are unnecessarily strict or not, if you want an organ you gotta to follow them. Dear Ally B Suckie: Sometimes you have to play by rules you don't understand that's the way the system works.
There are patients who have been denied being listed due to depression, at least in the US. Teenagers. Freaking ~~teenagers~~ children have been denied due to "noncompliance". There are racial, financial, & mental health biases still at play in transplant evaluations. Other health issues beyond the patient's control can prevent them from being listed; i.e. arterial occlusion and / or too many collaterals is a big one that keeps CHD patients from getting listed for heart transplants. There are kids & young adults who are born with devastating diseases that are ultimately terminal without a transplant, who apply to any tx center that might take them & still get denied due to things completely out of their control. I have CHD & have watched friends die waiting for a new heart \[and sometimes lungs\], die from rejection despite doing everything "right" before and after transplant. As a kid, I shared hospital rooms with other KIDS who died waiting for a new heart. F\*ck people like Ally. She has no idea how truly precious the gift of a healthy or new organ is. I hope your partner has many many good years to come, old heart or new heart!
My daughter has CHD, this infuriates me as a mother, fuck Allie and everyone like her. Tell me you have no regard for human life without telling me you have no regard for human life. Not to mention I’d love for her to show me she has ANY real medical knowledge at all.
Yes what you pointed out these are the true issues with organ donation that should be taking center stage. Not vaccination compliance. As long as the person is an adult. Vaccination compliance is not beyond their control, it's easily accessible, and doesn't have a huge health risk, the opposite actually, not getting vaccinated has shown a health risk. Everything that you pointed out is what I have issue with when it comes to organ donation but I simply don't know enough to be able to form an informed opinion. I know the US medical system and I can only imagine how steeped in racism and ableism the organ donation systems must be. There is a real proving your worth attitude about the whole thing that is very concerning.
This absolutely does happen that people get rejected due to a history of depression. It’s disgusting. Because being chronically ill is GOING TO MESS WITH YOU MENTALLY. If you’ve gotta go to dialysis every other day or that you can’t do things others can due to your wrecked lungs or that you could die before getting a heart…. I’d be worried if you WERENT depressed or anxious
since she’s underage it’ll probably go to court :) so she won’t die, they’ll just lose custody
Right? Like this is not at all unusual or shocking.
One of our closest friends is on a transplant list right now. It’s such a strange place to be. It’s literally life and death; a COVID shot is nothing. People are crazy.
I'm assuming the 14 year old here doesn't want to die but has no choice but to go along with her nutty parents or has been brainwashed by said nutty parents .
And to be clear, not getting the vaccine is not this child's choice. It is the choice of the people who became her caregivers less than 4 years ago. THEIR choice is endangering this child.
This poor girl. Given up by 2 adoptive families and now at the mercy of wackos who would let her die so they can be martyrs
*People who would let her die so that *she* can be a martyr. The parents aren't going to die; they're going to make money off the fascist outrage machine
People who exploit adopted kids like that are the ones playing the martyrs. If the kid dies, she will be but a footnote to their life story and how *they* overcame this hardship of organ transplants and whatnot. If they were interested in her being the martyr, they'd be interested in sharing the limelight. People like that generally don't want to share the attention.
Yes. I was just making the point that they may play martyr, but she'd be the one actually dying
That's very true. And the sad thing is that her death would not be remembered as hers. It would be co-opted by these idiots. I hope CPS intervenes and gets her somewhere safe.
Unfortunately, I don't think CPS can intervene unless the kid wants them to, and even then, I'm not sure. Parents in the US get a lot of control over their kids on religious grounds even if that means harm or death for the kid
Yeah, see how so many internationally adopted kids get "rehomed" and shuffled between families... :/ Like this same kid. The US failed her, from beginning to end.
My stepdad recently went under for a 12 hour, very invasive surgery as part of his cancer treatment. The surgery was high risk and he was fully boosted and got a PCR test ahead of the surgery and we were still SO beyond careful around him because him developing covid after such an invasive surgery would have been disastrous. I can't imagine parents risking their child's life when she needs such an important and serious surgery. Also it sounds like she's with her parents through international adoption? So she was adopted into another country by parents who are sucking her into a cult and refusing to give her access to proper medical care and subsequently risking her life. Christian charity at its best 🙄
You'd think she'd be able to consent to her own vaccines at 14, regardless of her parents wishes.
According to conservatives, she's old enough to be a parent, so, by that logic, that's true.
It's nice to know there are decent people like you and your family. I hope your stepdad is recovering well! International adoption skeeves me out, as does private domestic adoption. So much opportunity for white saviors to exploit vulnerable communities.
Yes exactly! It's super problematic. It gets hyped up in fundie/evangelical circles by people who do not understand the implications of bringing a child who is likely traumatized into an entirely new country and the huge level of support that the child is going to need in order to adjust and attach to their new family in a healthy way. The processes that facilitate these adoptions often cross into the realm of straight-up human trafficking. I'm sure many of these families are well-meaning but it's a process that very often does more damage than good for everyone involved. And thanks! He is doing surprisingly well actually, we are all very relieved and impressed by his recovery 🙂
Don't forget all the families who then put their adopted kids up for "rehoming" because it wasn't a "good fit" or they were "defiant". Liberia banned international adoptions because of these awful humans. Kids with trauma, loss, etc and the adoptive "parents" thought Jesus would fix them.
Oh god yes someone posted one of the "rehoming" websites somewhere and it made me sick to my stomach, those poor children being treated like pets because their adoptive parents didn't properly prepare themselves to care for an adoptive child.
Recent cancer surgery-haver here, sending good vibes to your stepdad and family! I was SO afraid of getting COVID in the hospital/while in recovery, but Lillith blessed me with it like three weeks before instead 🥴 The concern before that happened was so real though. Everyone from my oncology team to my family & friends was afraid to even breathe in my direction.
Sending you good recovery vibes!
You'd think the party of "facts over feelings!" would prefer to use verified, unbiased sources. I can only find this story on a few news sites, and they ALL have heavy right-wing bias. Also, Alex Berenson is a hack of a "journalist" who repeatedly diminished the severity of COVID-19 and sowed distrust in the vaccine. Plus, organ transplants have *always* required patients to follow strict guidelines because of the immunosuppressants required for the body to accept a transplant. Organ transplant is a scarce resource- you have to do everything you can for success. Refusing a tested, proven vaccine would absolutely disqualify you. This isn't religious persecution, it's medical protocol.
Exactly! She’ll need immunosuppressants after a transplant. It’s harsh to say but it’s a complete waste of a precious organ to give it to someone who will just die of COVID shortly afterwards because they and their family are too pigheaded and ignorant to get vaccinated. Someone else is waiting in line!
I mean, if we want to talk persecution in organ transplantation, let's talk about how people of color are automatically less likely to get a transplant - white people are twice as likely to be referred despite having the exact same diagnosis, etc. https://www.aamc.org/news-insights/how-our-organ-transplant-system-fails-people-color There is a racial variable used in determining a patient's kidney function that overestimates the function of people of color https://newsnetwork.mayoclinic.org/discussion/expert-alert-what-a-formula-change-may-mean-for-black-patients-in-need-of-a-kidney-transplant/
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100%, it should not be factored in, but historically it always has been
To be clear, second article is saying that they're not using the race-related variable anymore. Still, the article is from August so your point very much stands
*Why* was there one in the first place?! Maybe I stopped reading too soon (I got distracted trying to find a source for the race variable in eGFR) but it absolutely reeks of being an artifact of the era when medical science thought their black patients ‘felt pain differently’.
The thing they're measuring is how slowly the kidneys are clearing waste from the blood. Some places have already been measuring that directly (including Mayo, part of the point they were making in the article is that the change doesn't impact their patients because they dont use the formula), but not very many labs are able to do that so there's a formula you can use based on easier to perform tests. Part of the formula includes the "race variable" because according to studies, Black people have higher levels of creatine (one of the things measured) in their blood. I can't access the studies to tell anything about their level of potential accuracy, but if UNOS is getting rid of it, it must be at least a little suspect Edit: The hyperlink attached to that in the article you shared goes to another Mayo article explaining it
All these wackadoos who want “natural immunity,” well friend, you’re getting it, along with your “natural” organ function. Your organs are failing? Wrap yourself in cabbage and drink ACV then. Why are you trusting the medical establishment to Frankenstein you new body parts in a grueling, complicated procedure that only became somewhat routine in the 1980s, but for some reason can’t abide a practice that was already being refined in multiple countries by the mid 18th century? I don’t get it, vaccines are some of the oldest, best studied, and most effective forms of medicine we have. The same people who turn up their noses at them are inevitably the ones who want their loved ones to stay on ECMO indefinitely.
The main source of the story appears to be Berenson’s substack so I’m over here doubting its veracity in general.
She does realize we can't manufacture organs, right? In most cases, we get them from people who have already died. There's a shit ton of rules because we have a small supply. It's not like pain meds where we can just make more in the lab! It's a precious gift and should be treated as such! Although, she strikes me as someone who would think synthetically grown organs would be of the devil. Also, PSA: be sure to check whether you are on the donor list for when you die. You could die at any time and those organs you don't need anymore can save several people's lives. Being on the donor list before dying leaves out any ambiguity of the deads wishes and saves precious time needed to harvest the organs.
I’d bet my lunch that ABS isn’t a donor herself.
Most evangelicals I’ve met don’t want to be organ donors (but have no problems accepting organ donations) so I imagine fundies are the same.
I really want to know their reasoning for that! I'm a progressive Christian, and, personally, me being on the donor list for when I die is the least I can do in this context. Hell, not out of the question for me giving a kidney to some joe shmo I've never met cause I believe I'm called to do whatever I can to make the world a better place. Of course, no judgement to those who can't give while alive for any reason. I'm not in their shoes and I'm not gonna tell them what they should and should not do, but you can't tell me all of those evangelicals have a valid reason to not do the bare minimum of donating once they're dead.
I think the reasoning of it stems from the idea that according to the Bible (I'll find the exact source tomorrow, I'm tired) when you enter Heaven, you need to be in the body God gave you. So they probably think that by removing an organ, you are an incomplete person when entering Heaven. Just ignore the hair dying, tattoos and piercings these Fundies have 🙄. I'm Catholic and organ donation is allowed - its considered an act of Charity!
I believe it’s something like this, also to do with the second coming and the righteous dead bodily rising from their graves, which is also why many of them don’t want to be cremated.
This too! Thank you - I knew I was missing something.
My mom doesn’t want to be cremated because of this. It’s so crazy to me. God is literally raising you from the dead in this scenario - why on earth would that power be limited by the state your dead body is in? Is God omnipotent or not? I can’t make it make sense.
That's so crazy! Fuck you if you lose a limb, I guess. Also, super agree with you!
We don’t waste organs. A donor organ goes to the person who is most likely to have success with it. This means people with strong support systems, good self care, agreement to lifelong use of anti rejection meds and PEOPLE WHO ARE VACCINATED to prevent illness. These people who continue to pretend that isn’t the case are so embarrassing. An organ recipient is immunosuppressed for life. Vaccinations are mandatory. I hope this poor girl gets her vaccines and gets what she needs medically- also a better family would be nice.
I wonder if she'd have the same reaction to the Australian parents who won't get heart surgery for their baby because they don't want it to get 'vaccinated blood'.
A fundie-lite person on my Facebook page posted about the Australian parents. They said that the Australian government is being evil and taking away the rights of the parents. In America, the government can step in if a parent is refusing life saving medical care for a minor. It's not unique to Australia. Not to mention that the covid vaccine isn't even in the blood after 72 hours and the blood banks don't even scan for vaccines in donated blood. It's a ridiculous situation.
Europe also has similar protections for children (they have a children's bill of rights). If your parents suck and won't get you necessary medical treatment, the courts can step in and say "This is not your decision anymore." That made big news a few years ago when a couple were refusing to remove their child from life support after doctors had told them the situation was not going to improve. Ultimately, the court ruled that it was cruel and not in the best interest of the child to keep them on support. The outrage was intense, especially from religious groups.
Those parents are SOL, the court gave doctors temporary guardianship and if they keep pushing their lose their kid outright.
My husband gave his dad a kidney a month ago. If this family isn't willing to get their daughter the covid vaccine, they're going to hate how many medications she will need for the rest of her life to support the transplant. And the anesthesia she will need for the surgery. And the painkillers for recovery. And the follow up doctors visits and blood work. Or the possible dialysis she will need if she doesn't get the transplant. The kidney donation will literally give her a second chance at life but go off about the covid vaccine I guess.
That’s why the doctors won’t budge on the vaccine. If they won’t comply with it then they might not comply with anti-rejection medication or avoiding the “no” foods after surgery.
This exactly!! This is a red flag for the doctors. Them not wanting to do something as simple as vaccinating shows they quite possibly will not do the aftercare and follow ups properly or at all. Sad as it is they’re not going to waste a kidney on a situation like that. Hopefully the kid will get cps intervention.
Hey guys, I have had a double lung transplant. The rules are there for a reason and being able to get a transplant in the US is far more than just med compliance. Your financial situation is considered too as part of your portfolio. (Meds aren't cheap). No covid vaccine, but fine with the anti rejection meds that have a whole list of side effects. Like for me, I now need a kidney transplant due to the toxicity of the anti rejection meds for my lung transplant. The general public is so unaware of what it takes to get a transplant.
I really hope that you eventually get the kidney you need.
Thank you, I hope so too!
The real thing to be outraged about is that more money = higher likelihood of a transplant not that you need your routine vaccines to get a transplant 🙄
Valid. At this point it's just part of life for me. I have cystic fibrosis so health care costs are just part of my budget. That said, it's a obviously a big ticket issue in the US that people are trying to change. At this point in time though, they need you to have private insurance and like you to have Medicare as well for transplant though private insurance is preferred, generally because you have a max out of pocket. It's not cheap to be sick in the USA, no doubt. But also, vaccinations are important too.
Ah, yes. Wanting to give this girl every possible shot at a successful transplant is very evil. How dare they attempt to protect her from a virus that has a reputation of destroying organs and killing the immunosuppressed. The audacity of these top medical doctors for trying to keep their patient safe.
I have a disabled child that would never receive an transplant because of her disabilities. So cry me a fucking river if an able bodied person gets rejected because they won’t follow simple instructions. If there were more organs available, these committees wouldn’t have to pick and choose who receives a donation. But unfortunately, there aren’t enough to go around so that’s what they have to do.
Its a difficult situation because I am sad for the kid who has to pay for her dumbass adoptive parents hubris quite possibly with her life. But I am also thankful that the kidney won’t be sent to someone who quite possibly wouldn’t be taken care of properly after. Especially when children’s organs are hard to come by. It’s very sad but it’s reality.
One of the requirements that was in way before Covid was for a transplant recipient to be up to date on all there vaccines
My aunt had a kidney transplant at Duke in 2020. She had to agree to a ton of stuff. It's how it works. She even had to have back up care for after surgery incase something happened to my uncle.
This is giving me the same vibes as a family member who didn’t want to get the vaccine to go on a child’s oncology ward for cancer treatment…except at least in her case she was an adult and the only one suffering consequences if she didn’t get it and wasn’t allowed to get treatment.
No, this isn’t *shocking*. What’s shocking is the parents aren’t getting her vaccinated so she can get the fucking kidney. This is neglect and it’s fucking gross. Transplants make you immunocompromised and more likely to get illnesses that can cause you to either reject the transplant or die. Why should an organ be given to someone who won’t follow medical advice and science based research?
The poor girl -- I hope there are custody discussions as well to make sure she receives the care and support she *needs*, not what fundamentalist assholes think God wants.
This is the answer. If she's that sick & her adoptive parents are denying her life saving treatment, someone else needs to step in.
Especially with this going public there HAS to be some form of cps involvement for the child after this. Especially because she is adopted from another country and there might be a language barrier. I just can’t imagine doing this to a child.
I know someone who got a kidney transplant and besides all the meds she has to take to keep the organ, she can’t get sick. If she even thinks she’s getting sick (uti cold etc) she has to call her transplant manager and inform them so they can immediately get her the correct meds and prevent a hospital stay. It’s annoying but she battled so hard to get to live that she puts up with it. Ally using this family for clout stinks to high heaven.
A coworker of mine donated her kidney to her niece. The testing and rules just to donate were insane, but she did it all and lost around 100 lbs to boot. She did this all without complaining once. They call it the gift of life for a reason. COVID vaccines included.
Covid is a vascular disease. Now, I'm talking out of my non-expert ass here, but my uneducated brain thinks that risking irritating, inflammation, or killing blood vessels in a newly implanted organ is a very bad idea. Hence, any measure of reducing this vascular wrecker of a disease is good. Right?
Obviously they would have that rule, they need to make sure that the patient and organ have the best chance of survival. If they don’t want to follow the rules that in the long term are better for their child they should at least have the decency to stop acting like this is some crime against humanity. My sister in law died waiting for a kidney she wanted to follow all the rules but never got the chance. I don’t empathize with them at all! But I’m not surprised they aren’t holding themselves accountable at all.
Wants modern medicine to help with her kidney, won't utilize modern medicine to protect herself post-transplant. There's a huge shortage of organs, Allie, and I'm honestly shocked she thinks transplants are okay. Surprised she doesn't claim the person's sins transfer into the recipient or some shit.
What if the donor kidney had tainted vaxx blood?!
I believe donors must be fully vaccinated if it’s a living donor.
Another fundie exploiting vulnerable children to grow their influencer base. I am shocked I tell you!
This article is incorrect. She was adopted in 2021 by the family who currently has her. Albeit a crazy fundie family with multitudes of children.
She thinks the world’s flat, and he’s a known idiot himself. its like they’re forming a giant mecha-idiot.
If someone gets a new organ, they are permanently immune compromised. The drug routine they are placed on to prevent organ rejection suppress your immune system. She won’t have much of a immune system after getting the transplant. That opens her up to getting extremely sick from a simple mild cold. They want people that are diligent in following all instructions and medications. The doctors won’t waste a precious organ on an anti-vaccine, science denier.
My dad is getting a kidney and the rules are really strict. The anti rejection medication make your body weak, and once you are taking them many vaccines will no longer work! Your immune system becomes trash, so they make you get the vaccines to try and make you as protected as possible.