16-year-old refused to get a heart transplant — and mom couldn't override her
Article Source: msnbc.com
from:msnbc.comTeen angst can derail life-saving transplants
Seeded on Mon May 23, 2011 5:27 PM EDT (msnbc.com)
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This group is one of the greatest in need of advanced mental health support services both pre and post-transplant. Unfortunately, not enough hospitals have a medical/transplant psychologist on staff to help patients understand what to expect and ways of helping them to cope with it. A little coping can go a long way in improving adherence to treatment regimens, diet, exercise, adolescent rebellion, etc. Social workers who do much of the support now are a wonderful asset and extremely helpful but the level/focus of training is very different. The sad part is that the services of a good transplant psychologist can quickly pay for themselves in preventative measures but we as a society focus more on treatment than on prevention.
Yes, but no parent, or minor for that matter, would trust their child/self to the current mental health system...it's basically run by Big Pharma and the psychiatrists who write prescriptions, and NONE of the drugs they prescribe to teens UNDER eighteen are approved for use in those under eighteen....this is why I believe it should be the PATIENT'S choice, and their choice only to get mental health services...if she's old enough to give consent, she's old enough to choose or NOT choose mental health "treatment". And I use that term treatment loosely.
I am glad she chose the heart transplant though.
These kids need to realize that it is better to miss out on some of the moments of youth and live for the time of adulthood. But as all young people they live for the moment.
What a great kid that boy, Josh, is - to share his experience, and take her to his prom. Wish both of these young people the best.
What does prom have to do with a girl getting a heart transplant????
A return to normalcy, isis. That's what it has to do with it. :)
 My nephew is a transplant recipient. What people do not discuss are the challenges the young adults face in giving up parts of their life as they cannot participate as other kids are able. The management of the condition is not understood and beyond what anyone in that age bracket would typically ever consider. It is good to see some attention directed towards this issue.
Yes, my childhood best friend grew up with a congenital disease that was basically a death sentence. She tried to live a normal life, but with all her hospitalizations and drug regimes, it was nearly impossible. It's hard for an adult to deal with these issues, but it's brutal on a young person. She's been gone almost a decade now, and the older I get, the more I appreciate how truly difficult her struggles were, and how at the time I only understood a tiny bit of what she was going through. While she had good support (and her parents had good health insurance), I don't think there was as much attention paid to the unique struggles of a young adult in this situation.
If they don't want the organs, give them to someone who does want them.
How old are you? Seriously. I'd love to have an honest answer although I doubt I'll get one. Here's a guess. You're hovering somewhere around 60.
Should we let suicidal teens just go ahead and do it also?
Or automatically pull the plug of people on life support?
How about just allowing people to self medicate that tumor with homeopathic remedies, rather than take the time to explain chemo and radiation treatment?
All of the above examples are people who either don't know the alternatives, or are unable to make an informed decision. Your "f*ck 'em if they don't" attitude helps no one.
WHAT A MORON!!! Teens don't have the sense to come in outt of the rain, never mind make good health decisions. The girl needed a littile push and got it. If you want to talk about "people who want them", why did David Crosby of Crosby, Stills, and Nash get a liver? He wanted it but he didn't deserve it. He ruined the one he was born with and the 2nd one didn't keep him alive for long.
Factofthematters comment smacks of the ignorance of Republicanism
....Wow...I shouldn't be surprised somebody had to put in politics....
Want to play the race card too?
Um, monstar357? David Crosby is still alive.
I guess everyone here has pretty much nailed it. This guy is most certainly a brilliant example of a perfect ignoramus.
The process is called INFORMED consent for a reason. It is not ethical to accept an uninformed refusal without providing any effort to inform. After the effort to inform is made, sure, if the patient continues to refuse, then that is their prerogative. But only after the processes of properly informing them is complete.
Actually my father died because he needed an organ and couldn't receive one.
Just saying that these teens don't understand how stupid their refusal is.
Then they need education, not an "oh well".
Then they need education, not an "oh well".
When we were their age, do you think we would have been like "oh please don't give us these vital organs that we need to live?"
Can't speak for you, but for me I wouldn't have even given it a second thought.
I never hesitated to go to my dad if I thought something was wrong with me. When I was 10 I was getting into the shower when I noticed my left testicle was about 10 times bigger than my right one all of a sudden. Yelled for my dad without a moment of hesitation. Next day I was in the hospital for a hernia repair and home that evening.
I'd like to think that most kids are smart enough to know that when something is wrong, they just don't say "f*k it" and keep on going. That being said, I do know a 15 year old friend of mine who is procrastinating something fierce about going in and having a small tumor removed from her lower back.
I could not stop the tears from welling up when I read the article. Although the story was about engaging teens in their own treatments, I thought about all the people I know who refused medical advice. I had an aunt who went blind from diabetes instead of changing her diet. Several uncles died from lung cancer instead of giving up cigarettes. My mother frustrates my siblings and me by delaying her leukemia treatments. Our family almost lost a teen nephew because he did not want to inject insulin. I am so thankful that Courtney and Josh have chosen to take advantage of the best medicine has to offer.
Because of their courage and strength, I will now take my doctor's advice starting tomorrow. If Courtney and Josh can go through complicated heart transplants, then I can do something simple like exercise and lose that first 35 pounds! I no longer have any more excuses!
Courtney and Josh, I wish you both the best of life--now and in your very bright futures. Thank you for the inspiration!!
I wish you luck in your weight loss!
Work hard! You can do it! So many of us have trouble with our weight, and what those who don't have trouble have a hard time realizing is - it is NOT easy.
You might want to start out by getting yourself a stationary bicycle - you don't have to get one of the ones with the uncomfortable upright seat. The reclining models are just as good. Spend your time on your bike enjoying a good movie or some other pass time that you just cannot justify otherwise, and remember- there is literally NOTHING better that you could be doing.
what is the total cost of this procedure ? who is paying for it ? is this one of the reasons working families have a tough time paying for insurance? most important, would my child qualify for a transplant if needed or is this just offered to the privileged ?? i wish this beautiful woman nothing but the best, but the reality is--if this were my child, i would not have the choice of a transplant.
Actually, the procedure itself isn't that expensive anymore. around half a million, according to my friend who works in billing at a major hospital. It's the after care that is expensive and if insurance companies get their way with the lifetime limits, this girl will soon be looking at being uninsurable. Those 33 medications she's on are expensive and will quickly go to over a million dollars. While I'm glad she's alive. We really need to force big pharma companies to find drugs that are a whole lot cheaper to keep these patients alive for years to come. Otherwise this whole transplant business will end and end soon.
Many people don't have the choice of a transplant, either for the intial costs, or from the after care needed. I wonder how many of those teens who give up after a transplant, don't really give up, but run out of the money for the care. I've known other people who have lived their entire adult lives still paying for care they recieved as childern. Many don't marry, don't have a good career etc, because of the medical dept burden they carry. Look at how many employers now check credit scores before giving a person a job; how do you explain that your credit is bad because of surgery and treatments you had as a child and that it will never get better. The truth is that we still are only seeing the quanity of years and not the quality of life during those years...we need to work on both, and the first thing we have to do is not price live saving medical treatments in such a way as to permanently bankrupt someone who has those treatments.
It an interesting dilemma if a teenager is able to make a good choice about an invasive medical procedure.
I am glad this girl changed her mind.Now hopefully she can live out the rest of her natural life.Good Luck and all the Best.
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All you have to do is get a decent job that has insurance and you would.
You mean become a US Rep or Senator? Because that's the only really good insurance left. Unless your name is Trump, Kennedy, Roosevelt, etc. Employers are cutting costs across the board and one of the ways they've found to do it is through health insurance, they are looking for the cheapest they can find, and still manage to keep their employees, (for now). And with the unemployment rate still over 6% and higher, most people are staying at their jobs no matter what. Some insurance is better than none, but most of us know it's only for broken bones and hospice care.
Its about quality of life, transplants do not always offer that quality that one is looking for. Heart transplants are not forever, 33 pills daily, doesn't sound like quality to me. Its not the easiest decision but one must accept the responsibility of what kind of life they want, and are they going to do what it takes when given a second chance.
Teenage brains are not fully developed; a parent should legally be able to override their decisions.
Karen, my experience includes a hospital stay that ended before it should have because the insurance company booted me out, and I supposedly had a "good" policy. The welfare trash in the next room got to stay as long as she needed. Insurance companies want to make money and will fight you, but no one is advocating on behalf of the taxpayer and their dollars used to provide great care to those who choose not to contribute to society.
Workers w/ insurance are expected to get back to work ASAP, regardless of the effect on their health - I guess so we can pay more taxes so the dregs of society continued to get a free ride. You're foolish to think your health insurance company won't leave you hanging in a life-or-death situation.
Please further define "welfare trash". Ethnicity? Single mother? Unemployed? What exactly qualifies one to be "welfare trash"? And what exactly makes YOUR life worth more than theirs? Just curious.
Welfare trash? Seriously? What makes you so much better then someone who is on welfare? Honestly from the way you stated that in your comment your lower then any kind of trash I've even met in my life. You have no right to judge people like that. People like you don't deserve to stay in a hospital with medical treatment. All you deserve is to be hung in the street and shot for you low morals and the way you judge people. And I wouldn't mind being the person to do that to you.
GK...I've been on both sides of the 'fence'...
Last year my husband kicked me out of the house & I was homeless for 8 months. Yes, I got food stamps & some much needed medical attention. Now that I have a job (one that does not supply health insurance) & my husband 'allowed' me to come back home,I am now on his insurance. We can't afford to use it. It's only in case of a catastrophic illness, in which I'm not sure how much it will cover....
I'm not a supporter of 'universal health care' either...Look @ Britain & Canada & you see their system is not perfect either. Have YOU ever had to be 'on the other side of the coin'?
Presumably, the "welfare trash in the next room" was on Medicaid, or some other government run system where there is no provision for kicking out patients early for profit motives?
This is why America needs a single-payer universal access healthcare system, where the decision regarding how long a patient should stay in hospital is made entirely by the patient and the patient's physicians, and insurance companies have no say in the matter.
Janet Blanchard, Britain and Canada do not have perfect systems, but both of them cleanly beat the USA in every single measure of population healthcare outcome that has ever been tested. (And it's not even close on any of them). In fact, on all those measures, the USA has the WORST HEALTH SYSTEM IN THE ENTIRE CIVILIZED FIRST WORLD, and the one thing in common among nearly all the rest of the first world nations, is that they almost all have universal or near-universal access systems. The details of the systems vary, but the foundational value of universal access is shared by all.
"Teenage brains are not fully developed; a parent should legally be able to override their decisions."
You really ought to read the article before commenting.
factofthematters comment smacks of the ignorance of Republicanism
I had a liver transplant in 2001 at the age of 52. You take lots of pills at first......but then ONLY the rejection drug. THOSE ARE EXPENSIVE!!
I'm SOOOOOOO glad I had my transplant!!Â
 I see a lot of bumperstickers about "save the unborn babies." Do something really heroic, incredibly difficult, and that can affect society very quickly: SAVE THE TEENS!
This article hits the nail on the head! I am the mother of a 16 year old who was diagnosed with heriditary pancreatitis at the age of 2. She suffered from multiple ongoing attacks and by the time she was 14 she was so sick she was homebound from school and suffered from severe depression. She was never able to live a normal life because of her illness-no sports, trips, overnights with friends-because she never knew when she would get sick. We discovered a surgery that would basically cure her but involved the removal of her pancreas, spleen, appendix, and part of her intestines and then her islet cells were removed from her pancreas and transplanted into her liver, which in turn regenerated the islets and started producing insulin. I was ready for her to have the surgery the moment we found out she was a candidate but she was extremely scared at how major the surgery and recovery would be. The dr's said it was best wait until we had her buy in because her willingness and desire to have the surgery would play a huge part in her recovery. Within a few months she was able to make the decision that she wanted the surgery and that made all the difference in the world! But it also involved having her interact with other teens who had the surgery so she could know what it was like from their perspective. I think that is the key to helping these kids-we cannot discount the empathy they can get from others who have been through it already and survived. Teens already think their parents and adults could never imagine what they feel and experience in normal life-how could I as a mother honestly say I understood what she felt like? But the other teens could, that was what made the difference.
It is so hard to get a transplant and if there lucky enouf to get one take care of it, the second one is harded to find a match. Life is easerer with a transplant taking meds isnt hard but living on a matchine is. If you dont take your meds you will loose it and organs dont come easy not many people donate. Side effects suck but there manageble and get better in time. I cant get a transplant now because I have high anti bodies from previous transplant and the days of only taking meds is over. Life is harder now if your able to get one enjoy it and love it cause they dont come easy. When you get a transplant at a young age in your 30s or 40s you may need another thats my case and is been nothing but disapointment trying to get to were I was with a functioning kidney not gona happen for me.
take care of your tansplants take your meeds if you cant afford them go to the paitents assistance program they might help. I had a transplant at age 21 now I 39 and in need of a second one. The second is harded to find a match I cant find one my anti bodies are high. Life with transplant is much easerier than life in dialysis and that what I have to look foward to in the future I wish I could get a transplant I guss its not in my future but If your debateing transplant is better labs are good and you feel good. It takes about 3 months to feel ok after a year you feel new and it is a gift the best one you can get. Dont let anyone kill your transplant everyones a doctor but know your never going to acept this kidney as your own dont negglet the meds most important and that easy. I have to take meds daily now and I'm hooked to a matchenie every night dont neglect yourself live.
Nineteen years ago, my husband was informed that he needed a liver transplant and when he received the news, decided that he would not go through this. At the time of the announcement, he didn't feel too terribly ill. I decided to stay out of it and leave it up to him.
As time went on, he steadily went downhill and one night announced that he couldn't take it anymore and that he wanted to see the doctor and talk to him about a transplant. His physician saw us that same week in May. My husband was medically approved in June, approved by the insurance in August and received his liver in December. He was pretty much "on his way out" at the time of the surgery with a sky high ammonia level, platelets bottomed out complicated by bleeding.
Eighteen years later, he is now waiting for a kidney with a much different attitude towards organ transplantation especially since we have both had to deal with dialysis - he as the patient and me as the caregiver. We trained to do his hemodialysis treatments at home ourselves. Much easier and actually healthier for the patient. Not so much on the caregiver.
toni - you may want to look into home hemo. If you'd like more info - I can provide the links for you. It made a world of difference in my husband - like night and day.
For the record, he received a great deal of support from the staff, including a psychiatrist who met with him pre and post surgery. They were wonderful at the medical center where he received his care. He is currently being seen at a different medical center now but I would say that his care is comparable to what he received at the first facility and has been top notch.
Several years ago I took care of a 16 yr old that received a transplant, he was yelling no all the way to the operating room. Â His postoperative course was rocky at best and several years later he refused to take his immunosuppression medications, his parents divorced and the kid was chronically rejection his heart. Â I don't even know if he is alive today, BUT as health care providers we need to listen to them as well.
33 pills a day!!!!! OMG what a pain. I think I will just die instead of all that inconvenience. BTW I've been there...Heart transplant 8 years ago. If you would rather be in stage 4 heart failure than take 33 pills a day, Y ou have never been in heart failure!
As a teenager myself, I don't know a single teenager who, if put in a situation where they had to face certain death or have surgery that might keep them alive, wouldn't take the latter in a heartbeat. I for one, as well as my friends, would take a chance at living for the future than living the "normal life"...
I'm glad she decided to get the transplant. Sometimes it just take someone who went through the same thing to get through to people.
I'm all for Darwinism. If someone is stupid enough to die rather than get a transplant, bad DNA won't be passed on to their offspring.
I see many bringing "welfare" people into this conversation for some strange reason. Yes, they do get care (becuase they are sick). That care is subsidized through the governent. Exactly what is someone that can't work or has been laid off supposed to do when they become ill? I have seen it first hand in the hospital. We have great insurance and when my husband got MRSA, it cost oodles to save his leg. Yet, there were others with insurance that wasn't so great or no insurance that lost their leg/legs. I know a man that had the same thing as my husband but not as bad.... He lost his leg because it was cheaper for the hospital to cut it off.
As far as this article goes.... Teenagers must be onboard when it comes to medical care that they will have to maintain for the rest of their lives. Transplants require huge amounts of medications to be taken every day and some of the side effects can be devastating. It is easy for the parent of a toddler to say just make the kid take the medicine but when the 'kid' is a young adult it is not that easy. Kids that have had a illness for a very long time start to distrust medical professionals. They have been told MANY times that this medicine or procedure will help and then ... nothing. So when the prospect of having a painful surgery along with difficult recovery and lifelong medications comes along, the choice is hard. I think connecting teens that are going through the same thing is a great idea.
As for the insurance, that's "the breaks".
I know people with great insurance that were decapitated in a car accident and the doctors couldn't stitch their head back on. I know people with no insurance that lived to be very old...until they were murdered by someone who probably also didn't have insurance.
Having children is expensive to people with insurance policies but not so expensive to people who don't have a job/income.
As for the connecting teens, that's a decent idea but who should be the ones to arrange that? The parents.
My Daughter had a heart transplant when she was 2 months old. Now a healthy and "normal" 8 month old, she is doing great. I understand why teens don't want transplants, having met a couple at our hospital, but I don't think they understand death. It was one of the hardest things for me ever to sign the paperwork for my little girl to get a heart transplant. When we get older, I think we understand how they get the donor hearts and other vital organs. We think of the little person that gave our Daughter life everyday. As a teen, with all of the changes, I think it would be alot harded to understand. I'm just glad my little girl was so small, she won't remember how hard the whole process was. She will always know an angel gave her life and that will always define her life. But she will hopefully never deal with the issues a teen would with a major transplant.
Ikr
I heard no mention of insurance, politics or race in this article. So, why are some of you trying to make this into something it's not. ? A person on the staff at the hospital recalled a young man with the same problem, only months earlier. It was an encouragement thing. Hopefully she will be back cheerleading in no time. Oh yea, the 33 pills she has to take, they didn't say she has to take them for life. I would imagine of course pain pills, but I think most is for the organ not to reject. Once accepted I think her medication will be reduced as well.