4 ms·

Living kidney donor here. Donor status on Fb sounds like a great idea for raising awareness and encouraging others to think and talk about organ donation (livi

Living kidney donor here. Donor status on Fb sounds like a great idea for raising awareness and encouraging others to think and talk about organ donation (living and non). That said, during my process I talked to a number of professionals in the field and repeatedly got the same feedback: The sticker on your license (and likely the flag on your Fb profile) doesn't mean much in the end. If you've got living family, they'll be asked and their answer is going to hold weight. The most important thing you can do as someone who wants to be a donor is to make sure you're family is aware of your decision and willing to give the go ahead if that time comes. Registrations like the one mentioned in the article seem like an awesome idea, but I'd still be interested to know how often they're contested by family. Bottom line is that there's probably no better plan than for your family to understand and be on board with your decision.

avichal 15y ago
I assumed they were doing it not for the donors, but for potential recipients. For example, suppose someone you know needs a kidney. You could look and see which of your friends would be willing to donate one, or ask them to post a message to their friends and see which of your friends-of-friends could donate. It's probably a lot more efficient and people are probably far more likely to donate to someone they know personally. And for the recipient it's probably a much faster and easier process than having to wait on a donor list. Eventually I could see the same with bone marrow and blood type where it's a donation that you can make and keep living, but where millions of people die because there aren't enough donors. P.S. Go register to be a bone marrow donor: http://marrow.org/Home.aspx http://marrow.org/Home.aspx
- famousactress 15y ago
  The registrations in question are generally not for living donation. Of course, willingness to donate at all certainly may be an indicator of willingness to participate in living donation.
mistercow 15y ago
> The sticker on your license (and likely the flag on your Fb profile) doesn't mean much in the end. The flag on your FB profile will likely mean nothing officially, but practically it will mean more than the driver's license because your family is more likely to see it and be aware of it.
- famousactress 15y ago
  Totally. I think it's way more public and visible... That said, this is a decision that family has to make at an incredibly stressful, confusing, and emotional time. It may be something that you've thought a lot about, but if family members haven't had a chance to think through this scenario it can be a really disarming and terrifying decision to be presented with... especially if it's not one that they'd ever make for themselves. Some of the folks I talked to touched on anecdotes where even though the family was 'aware', there's still a lot of potential for hesitation if they're not absolutely sure that it's something you've thought about and have conviction behind. I think stickers and Fb flags are great, but these conversations are really the best way to ensure your decision is carried out.. and they have the added benefit of really making people internalize and think about organ donation very seriously.
adamclayman 15y ago
famousactress: Congrats on the donation. I'm working through the evaluation process myself. Do you have any advice to share? RE: License sticker, it can't be overridden by family in a first-person consent state; it's the driver's decision to be a donor, and her wishes can't be overruled. RE: Facebook organ donor status, it's a fantastic way to spread the word about your willingness to be an organ donor, and when no driver's license registration exists, it can help families exercise more accurate substituted judgment. In general agreement that there's "no better plan than for your family to understand and be on board with your decision." Designating yourself as an organ donor at your nearest BMV makes your decision legally binding.
- famousactress 15y ago
  > RE: License sticker, it can't be overridden by family in a first-person consent state; it's the driver's decision to be a donor, and her wishes can't be overruled. Even if this is technically true, I'm not sure it's practically always the case. Again, my info is anecdotal and a decade old but I was given the impression that the family is still a part of the conversation, and if they protest the fear of litigation can cause the donation to be avoided. Presumably the hospital and clinical folks involved have a number of decision points for whether or not harvesting will be followed through on. Your family is capable of suing, but you no longer are. > Congrats on the donation. I'm working through the evaluation process myself. Do you have any advice to share? Thanks! Congratulations on considering becoming a donor! As for advice.. that's a pretty broad question. It's a pretty long, scary, emotionally draining, and incredibly rewarding process. One of the things that I didn't really understand going in was that it's not a decision you really have to make before you get started (and even if you think you've made a decision, you'll likely find yourself re-making it many more times over)... For me the donor team was amazing at educating and preparing me to make a decision at the end of a lengthy evaluation process rather than the beginning. They do a really great job vetting you physically and emotionally for the process. If you (or anyone else) has any other questions, definitely feel free to drop me a line. Contact info's in my profile, and I'm happy to answer anything.
sureshv 15y ago
Donor status is not a sticker in CA, it's imprinted on the license and IIRC I signed a form affirming donation during the process of getting the license.
- tomjen3 15y ago
  Does that mean that you can't get a CA drivers license without giving up your right to your body?
Splines 15y ago
It also helps if you have a will (and your family members know where to find it). When you're gone it'll be easier for them if you have explicit instructions about what to do. One more data point of "they wanted to donate/not donate their organs" can only make their decision more clear.
tomjen3 15y ago
Does that mean your family could also override your desire not to donate? I could imagine that being a total fuck you to people who had religious issues and family who didn't like them.
whackberry 15y ago
> Living kidney donor here. The "living" part is redundant.
- famousactress 15y ago
  Haha. You'd think. Many people identify themselves as "Organ Donors" to represent that they've pledged to donate after death. Proper english? Nah, but it's a typical way of putting it. "Living Donation" is a common way to make the distinction. If I'd said 'kidney donor' then some folks might have been under the impression that I'd made such a pledge as opposed to having already donated.

avichal 15y ago

I assumed they were doing it not for the donors, but for potential recipients. For example, suppose someone you know needs a kidney. You could look and see which of your friends would be willing to donate one, or ask them to post a message to their friends and see which of your friends-of-friends could donate. It's probably a lot more efficient and people are probably far more likely to donate to someone they know personally. And for the recipient it's probably a much faster and easier process than having to wait on a donor list. Eventually I could see the same with bone marrow and blood type where it's a donation that you can make and keep living, but where millions of people die because there aren't enough donors. P.S. Go register to be a bone marrow donor: http://marrow.org/Home.aspx http://marrow.org/Home.aspx

famousactress 15y ago
The registrations in question are generally not for living donation. Of course, willingness to donate at all certainly may be an indicator of willingness to participate in living donation.

mistercow 15y ago

> The sticker on your license (and likely the flag on your Fb profile) doesn't mean much in the end. The flag on your FB profile will likely mean nothing officially, but practically it will mean more than the driver's license because your family is more likely to see it and be aware of it.

famousactress 15y ago
Totally. I think it's way more public and visible... That said, this is a decision that family has to make at an incredibly stressful, confusing, and emotional time. It may be something that you've thought a lot about, but if family members haven't had a chance to think through this scenario it can be a really disarming and terrifying decision to be presented with... especially if it's not one that they'd ever make for themselves. Some of the folks I talked to touched on anecdotes where even though the family was 'aware', there's still a lot of potential for hesitation if they're not absolutely sure that it's something you've thought about and have conviction behind. I think stickers and Fb flags are great, but these conversations are really the best way to ensure your decision is carried out.. and they have the added benefit of really making people internalize and think about organ donation very seriously.

adamclayman 15y ago

famousactress: Congrats on the donation. I'm working through the evaluation process myself. Do you have any advice to share? RE: License sticker, it can't be overridden by family in a first-person consent state; it's the driver's decision to be a donor, and her wishes can't be overruled. RE: Facebook organ donor status, it's a fantastic way to spread the word about your willingness to be an organ donor, and when no driver's license registration exists, it can help families exercise more accurate substituted judgment. In general agreement that there's "no better plan than for your family to understand and be on board with your decision." Designating yourself as an organ donor at your nearest BMV makes your decision legally binding.

famousactress 15y ago
> RE: License sticker, it can't be overridden by family in a first-person consent state; it's the driver's decision to be a donor, and her wishes can't be overruled. Even if this is technically true, I'm not sure it's practically always the case. Again, my info is anecdotal and a decade old but I was given the impression that the family is still a part of the conversation, and if they protest the fear of litigation can cause the donation to be avoided. Presumably the hospital and clinical folks involved have a number of decision points for whether or not harvesting will be followed through on. Your family is capable of suing, but you no longer are. > Congrats on the donation. I'm working through the evaluation process myself. Do you have any advice to share? Thanks! Congratulations on considering becoming a donor! As for advice.. that's a pretty broad question. It's a pretty long, scary, emotionally draining, and incredibly rewarding process. One of the things that I didn't really understand going in was that it's not a decision you really have to make before you get started (and even if you think you've made a decision, you'll likely find yourself re-making it many more times over)... For me the donor team was amazing at educating and preparing me to make a decision at the end of a lengthy evaluation process rather than the beginning. They do a really great job vetting you physically and emotionally for the process. If you (or anyone else) has any other questions, definitely feel free to drop me a line. Contact info's in my profile, and I'm happy to answer anything.

sureshv 15y ago

Donor status is not a sticker in CA, it's imprinted on the license and IIRC I signed a form affirming donation during the process of getting the license.

tomjen3 15y ago
Does that mean that you can't get a CA drivers license without giving up your right to your body?

Splines 15y ago

It also helps if you have a will (and your family members know where to find it). When you're gone it'll be easier for them if you have explicit instructions about what to do. One more data point of "they wanted to donate/not donate their organs" can only make their decision more clear.

tomjen3 15y ago

Does that mean your family could also override your desire not to donate? I could imagine that being a total fuck you to people who had religious issues and family who didn't like them.

whackberry 15y ago

> Living kidney donor here. The "living" part is redundant.

famousactress 15y ago
Haha. You'd think. Many people identify themselves as "Organ Donors" to represent that they've pledged to donate after death. Proper english? Nah, but it's a typical way of putting it. "Living Donation" is a common way to make the distinction. If I'd said 'kidney donor' then some folks might have been under the impression that I'd made such a pledge as opposed to having already donated.