Tuesday, May 11, 2010

NY organ transplant bill...

There is a bill coming up in the NY Assembly that would make organ donation mandatory in the state, with an option to opt out for religious/cultural or other reasons.

See here for more info... http://wcbstv.com/health/ny.organ.donor.2.1662437.html

Your thoughts on this?

As for myself, I have VERY strong feelings about this. I've believed for over 20 years that it should be mandatory; I've seen too many people die while waiting. I've heard too many families override the patient's wishes to donate. I've seen the positive outcomes when a transplant saves a life. (Up close & personal ~ a friend's son had a double lung transplant for his cystic fibrosis.)

Have any of you had a friend or relative who donated? Who received a donation??

All viewpoints welcomed...

6 comments:

BreathinSteven said...

Hey You...

Thank you for posting your feelings about this -- I'm on your side... I too have very strong feelings, though I'm somewhat biased on this subject...

Registering to be an organ donor is end-of-life planning, and too many of us in this human condition tend not to go there... Many of us do not have wills, healthcare directives -- we have not made plans in the event of our demise, very often because we're young and we're going to live forever... I think it's kinda natural to not, or not want to think about the end...

In surveys, 80-90% of people polled believe that organ donation is a good thing -- yet only about 60% actually register, if that amount... Since the vast, vast majority of people agree that donation is a good thing -- I agree that making it the default choice and allowing people to "opt out" or choose in advance not to donate would be reasonable... There are over 20 countries in Europe, Eastern Europe and the Middle East who currently have presumed consent laws...

Like your friend's son -- I too have cystic fibrosis. 10 years ago, a beautiful 17-year-old girl from Iowa named Kari told her family how strongly she felt about organ donation. Twice. 10 years ago I was dying, my lungs were finally failing after years of being savaged by CF. 10 years ago in April, Kari passed away after a bleed near her brain and her family followed her wishes. I breathe with Kari's lungs. She's on my mind throughout they day, every day -- I can see her smile when I close my eyes...

Some of us go through life "normally", and in our adult life, or sometimes late adult life, we suffer kidney failure, liver failure, lung or heart failure, for any number of reasons -- we wait -- too many of us do not survive the wait -- and perhaps we receive an incredible gift from a stranger and a family who lost someone they loved... And they give us life, and several more years with the people we love... But for some of us, the gift is so much more than life... All of my life, like your friend's son with CF, I'd never, ever understood what it felt like to breathe normally... Kari and her family didn't just give me life, she gave me a life I'd never, ever known... It's been 10 years for me and breathing like I do now blows my freakin' mind every single day. I think about it throughout the day, every single day -- it will never not amaze me...

And I noted in your profile that you're a nurse... Thank you for putting this question out there -- and thank you for doing what you do. Kari is my hero -- I will think about her with my last breath with her beautiful lungs... But I've had hundreds of nurses in my life -- they too are one of the reasons I'm still alive today... I think about them often.

Love, Steve

Steve Ferkau
Chicago, IL
www.ClimbingForKari.org

me said...

Steve ~
Thank you so much for sharing your story ~ it brought tears to my eyes.
I think there is much to be done in educating the public about donations ~ old concepts and fears need to be corrected and/or dismissed, and people like you need to tell their stories loud & clear.
I wish you continued health with you & Kari's lungs ~

Dave said...

If we're going to presume people are organ donors unless they opt out, there needs to be a reward for not opting out. Donated organs should be allocated first to those who haven't opted out. People who opt out of organ donation should go to the back of the transplant waiting list. The United Network for Organ Sharing, which manages the national organ allocation system, has the power to make this simple policy change. No legislative action is required.

Americans who want to donate their organs to other registered organ donors don't have to wait for UNOS to act. They can join LifeSharers, a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. Membership is free at www.lifesharers.org or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.

According to a new survey by Donate Life America 43 percent of people are undecided, reluctant or do not wish to have their organs and tissue donated after their deaths. Is this because Americans don't know there is an organ shortage? No. The survey also reports that 78 percent realize there are more people who need organ transplants in the U.S. than the number of donated organs available.

Just about every single one of the 43% of Americans who aren't willing to register as organ donors would accept an organ transplant if they needed one to live. As long as we let non-donors jump to the front of the waiting list when they need transplants we'll always have an organ shortage.


David J. Undis
Executive Director
LifeSharers

GB, RN said...

My best friend had a kidney transplant 12 years ago, her younger sister having donated after two false calls for organs.

The NY law is a pretty strong one, and I am not sure how I feel about the mandatory part when you consider the scenario in which the decision to give is often made. It's hard enough for a family to reconcile that their seemingly living breathing family member (on the machines that make it so) is actually dead because their doctors are telling them so. Then, you toss in "we're going to just take their organs because your family member is brain dead", and it has the potential for disaster.

I fall more in line with what Dave has said. Isreal just enacted a law that gives organ donors first priority if they should need an organ themselves. Those who are more than willing to accept a life-saving organ, but not willing to return the favor, fall further down the list. I would be all for a similar law to be introduced in the US. I would also be for more laws that encourage living donors...tax credits for expenses incurred while on medical leave, or hell, just an outright deduction for the year you donated, maybe special discounts on insurance, or a special card that gives you Donor Discounts at your favorite restaurants and shopping centers.

Sadly, I see a lot of patients die while waiting for their second chance at life. Something definitely needs to change.

BreathinSteven said...

I agree, GB RN, that the New York law is a strong one... Many European countries have presumed consent / opt-out laws regarding organ donation - but I agree that the United States is not quite ready for that...

However, I disagree with Dave's organization... Over the past several years, roughly half of the organ donors in the Unites States are people who did not commit to organ donation before they passed away - they were people whose loved ones were approached by an OPO and asked to donate, and their families agreed and chose to donate... Many of them are not "registered donors", yet when the time came, they took action to save the lives of others. They very likely may still not be registered donors, and Dave's organization would see that they are passed over for a "registered donor", even though, by their actions, they have displayed their intent and support... How do you account for these people - particularly when they represent a seemingly large portion of the population, with Dave's system? I believe that they need the benefit of the doubt...

I don't know that my donor family has registered - but the thought that they would be denied based on a system like Dave's, after they have already demonstrated their stand by their actions seems unconsionable to me...

Of those 43% of people who are not registered - many are simply unaware - and many will make the good decision when and if the time comes regardless of registration... Beyond that - people on Dave's list seem to be "double dipping" - they are not taking themselves off the UNOS list if they are waiting, so they are putting themselves out as believing that registered organ donors should have first dibs on organs from other registered donors within their own list, as well as keeping themselves registered on a list where a life saving organ may come from a list of people to whome they would not be willing to donate - I find that puzzling.

Love, Steve

Dave said...

Steve:

The primary goal of the transplant system should be to save as many lives as possible. If UNOS allocated organs first to registered organ donors, would more people donate and would more lives be saved? It seems clear that the answer is yes.

LifeSharers is doing the best we can. It would be great if I could offer my organs first to any registered organ donor, but UNOS won't let people do that. LifeSharers is the closest we can come to that.

LifeSharers members aren't "double dipping" and there is no one we're not willing to donate to. We'll accept organs from anyone, just like everyone else will. We'll donate our organs to anyone, with an allocation preference to people who will agree to do the same. Everyone is welcome to join, and it doesn't cost anything. Again, this is the best we can do under current UNOS rules.

More than half of the people who need transplants in the United States die before they get one. These deaths are the direct result of people refusing to donate their organs after they've died. LifeSharers is trying to reduce the organ shortage by creating an incentive for people to register as organ donors. If you're a registered organ donor, there's about a 90% chance your organs will be donated if you die in circumstances permitting donation. The donation rate from people were not registered donors is much lower. That's why it makes sense to incentive the act of registration.


Cottleston Pie is the Taoist philosophy dealing with our Inner Nature (as explained by Winnie-the-Pooh)
To get the full scoop, read "The Tao of Pooh" by Benjamin Hoff.
The full poem is at the very bottom here...