Call me a bleeding heart, but all I can think is that he is so young.
Without knowing who else is on the waiting list there’s no way of knowing if there are younger kids who are going to miss out on a heart because of this one.
IMHO the hospital caved to avoid being dragged into some sort of racial ordeal. I’m not saying the parents HAD played the “he’s not getting one because he’s black” card yet but I think there’s a decent chance it was on it’s way and the hospital decided it wasn’t worth the certain media doom, regardless as to whether or not his race had anything to do with it. I guess if my kid needed a heart transplant I’d play whatever card I had to get one for them too. Doesn’t make it right though.
Any chance they are trying to get the kid to change his attitude to medical compliance? Because I could see that.
Very true. But for every patient, young or old, looking at their support system is part of evaluating probable post-transplant maintenance. So they’re probably looking at a family who doesn’t get him to the doctor, may not have the money for anti-rejection drugs or the wherewithall to find it. They probably* see a whole group of people who feed this non-compliance problem, or are at least unwilling or unable to help. And yes, he’s young and that sucks when someone young dies, but what’s the alternative? Taking him away from his family and finding him a foster home just in case maybe an organ comes up for him? That seems awfully cruel and unlikely for a 15 year old black kid with health issues, too…
Ironically, this is why prisoners with long sentences aren’t generally excluded from transplants - they tend to be very good with post-transplant care, because they’re not allowed to skip their doctors’ appointments and they have an excellent support system to help them with their med compliance.
*I’m going to stop using the word “probably” in every sentence, but just imagine it’s there…all we can do is speculate, because the hospital and his doctors and nurses are prevented from sharing their information about him and what let them to this decision with the public.
This, exactly. Yes, Tony Stokes might be as lovable as his mother claims he is. Yes, it’s a great tragedy that he needs a new heart at 15. But if he’s not going to take care of that heart, then even if John Smith is 62, but is a very responsible person, then that heart is likely to last longer in Smith than in Stokes.
Part of the problem is that Stokes is 15, and even well-behaved 15 year olds are not well known for having the best judgement. They are also often non-compliant in many ways. Usually, there’s nothing fatal about this, and it’s regarded, rightly, as just being a part of being a teenager and growing up. But Stokes doesn’t have the luxury of being a rebellious teen any longer, not if he wants to live. And the people who rank potential recipients have to look at his track record. They shouldn’t be making decisions based on emotions, but on whether or not Stokes is the best recipient for a particular heart, and whether he is the recipient who is most likely to get the most use out of it.
I think that the decision to put him at the top of the list is the wrong one, medically. The selection committee probably did it because of social pressure, and I think that’s wrong, too.
If you sat down and read the stories and backgrounds of everyone on the transplant list, your bleeding heart would probably break. Some of those people are not going to get the transplant they need. They will die. They have people who love them and care about them. They have unfinished business in this world. They are not ready to go. And many are quite young.
This particular one has had a newspaper story about him. You know his story so you have more sympathy for him than you do for all the people on the list whose stories you don’t know. But that doesn’t make him more deserving.
I used to work in pediatric cardiology. Our doctors had patients from newborn through well into adulthood, as most standard cardiologists aren’t used to dealing with the aftereffects of birth defects, surgically corrected or not.
15 is young, sure, but so is 2.
<3
I’ll just add that they may well have had very serious, genuine concerns about the teen and his family being unwilling and/or unable to do sufficient aftercare to ensure that he did not end up rejecting the heart or risking his health.
I have no idea how any doctors would know about a kid’s grades unless the parents told them, or about encounters with the cops. What they would definitely know is if he showed up for appointments, if he admitted to not filling prescriptions, not taking meds, that kind of thing.
When I worked in that job, we had a parent of a newborn who was blue in the face (cyanosis due to poor oxygenation of blood, as a result of a severe heart defect previously undiagnosed) who didn’t want to bring the baby in because a relative’s 5-year-old was having a kindergarten graduation that day. The doctors pleaded with her to bring in the baby to the ER. Emergency surgery was done within a couple days.
We had a number of times when parents were not bringing their rather sick kids in for appointments, to the point where we had to write letters mentioning that DCFS might have to get involved.
We had one teenager who was on digoxin, which needs regular blood monitoring to check levels. She had to have her dose dropped a few times but her symptoms were not improving; she eventually admitted to not taking her meds, then taking extra soon before the appointment, which threw off the monitoring labs.
Then again, there may also be a lot of assumptions and projecting that went in to the first decision. We don’t know. None of us have the details. I imagine its fairly normal to appeal these decisions, and I imagine the appeals often work.
To tell a story of non-complience, when I was a newborn I was very ill, crying constantly and losing weight. My mom- who was very young at the time- called the doctor multiple times, and each time she was assured it was normal and that she was just being a clueless teenage mother. She begged to bring me in, but they would not schedule an appointment.
Well, eventually she took me in, and it turned out I had a life threatening allergy. She got a lecture on how she was an unfit mom and how her negligence almost killed me. I am sure the doctor went home with a smug story about the terrible trashy teen mom who neglected her kid.
Now, how many ways do you think that story would have been different if my mom had been a middle class older professional?
There’s also the problem that some patients get labeled “non-compliant” because they choose, in full informed consent, not to follow one or more of their doctors’ recommendations. I’ve braced myself walking into a patient with a “non-compliant” report, only to find that they’re not non-compliant so much as thinking for themselves and not blindly following every order. They may want to try elevating their legs and epsom soaks to reduce the swelling in their feet, rather than taking hydrochlorothiazide. Not necessarily anything wrong with that, as long as you are mentally competent and aware of why your doctor wants you to take hydrochlorothiazide instead (usually because when people say they’ll elevate their legs and do soaks, they don’t) and we keep a careful eye on the swelling, but it will get you labeled among your caregivers, and that stays with you.
Again, not saying that’s the case with this boy, but just an observation on the trickiness of the “non-compliance” issue in a medical community that’s deeply ambivalent about the nature of paternalistic medicine.
This decision has been reversed on review, he is now on the transplant list. (It would seem that the bad grades/defiant behaviour may be the result of discovering he’s has a fatal condition, struggling to handle it, being 15, etc. ) and it now seems parents and child are swearing to be fully compliant. Perhaps that was all that was lacking all along?
Ah yes, the old “he hasn’t been responsible all along, but one big important family moment and he’s now the model of responsibility” setup. Common in lifetime movies, not so much in real life.
past performance is the best indicator of future performance.
I’m guessing that he comes from an extremely unstable family situation. It’s also possible that his condition was due to this noncompliance, whatever that entails.
One aspect of organ transplantation that the general public doesn’t realize is that a huge percentage of the people who have them remain chronically ill and permanently disabled, just not in the same way they were before. Some of those anti-rejection drugs have terrible side effects, to the point where some people decide not to take them and risk losing their organ. 
Interestingly, a surprising number of them don’t, and it’s now believed that stem cells from the transplanted organ may have engrafted and tricked the recipient’s immune system into thinking the organ is “theirs”.
A while back, my local newspaper did an investigation at to why so few dentist take Medicaid, and the ones who responded all told the same stories. One that stands out is the one who said that the parents don’t have the means to take their children to the dentist, but they always had a way to get to an amusement part that is 3 hours away and costs $30 a person to get into. :smack:
As for the girl on digoxin, that kind of behavior is VERY common in diabetics of all ages and types, but now that we have A1C monitoring, which reflects average blood sugars in the preceding weeks, it’s harder for them to lie.
Back when I worked at the grocery store pharmacy, there was a family who seems to take their kids to the walk-in clinic at least once a week, but they NEVER picked up the prescriptions. I finally called the doctor and told him this, and we never saw anything from them again.
I also remember a man who had multiple medical problems, and very good insurance too, but he just didn’t pick up his prescriptions to the point where I put a note in the computer to just put everything on hold and not fill it. One Saturday, we got a fax from the ER for Phenergan suppositories, which are for nausea and vomiting, and when the tech handed me the RX with an “hold” sticker on it, I replied, “Um, he’s going to want these.” Sure enough, several minutes later, a truck pulled up at our drive-up window with his daughter at the wheel and him looking VERY green in the passenger’s seat. Oh, and we let the doctor know that he didn’t pick up his other meds.
BINGO! This is one reason why doing transplants on recovering addicts is so controversial.
You might be surprised. However, I wonder why they refused to schedule an appointment. Was your mother a cash-paying or charity patient? That’s my guess. :mad:
I used to work with a pharmacist who was (and still is, BTW) married to a social worker, and their first child had terrible “colic” (turned out to be reflux) and he too cried constantly and didn’t feed well. He told me that this baby cried for almost TWO DAYS without stopping at one point! I would have been in the ER long before that, but then again, maybe you can tell I don’t have any children.
When I was a kid I sometimes resented that I never got the trips to Disneyland or those other amusement parks that other kids my age did. No, I got stuff like a trip to the dentist every six months without fail.
Thank Og my parents put up with our whining - us kids are now adults near or over 50 with our own teeth, and up until recently, very good health. As another side effect, we also learned how to entertain ourselves without spending a lot of money. Unfortunately, my eldest surviving sister has an auto-immune disorder that was destroying her heart. They think they have it under control but if they don’t she’ll likely end up on the transplant list herself.
I think a lot of parents trade the long-term goods of regular dental and medical stuff (which, let’s face it, aren’t fun and frequently result in whining or crying children) for the short-term feel good of the kids having fun and smiling at the amusement park. I can understand their emotional viewpoint, but if I could give poor families one thing it would be the strength to delay gratification when doing so would yield long-term benefits.
I just had a friend lose his battle with skin cancer made a million times worse because of the meds he needed because of his kidney transplant.
And kidneys are the easy organ transplant.