5 ms·

> To be honest, I still have a couple years wait on the kidney but there is a non-zero change of a perfect match that gets to the head of the line. And I certai

> To be honest, I still have a couple years wait on the kidney but there is a non-zero change of a perfect match that gets to the head of the line. And I certainly don't want to miss that. I got curious, and scanned https://www.organdonor.gov/ https://www.organdonor.gov/ to see how one gets notified when an organ is available. I didn't see any information after a few minutes of poking around the site. When a kidney does become available, what is the process by which you'd be notified? Do they make one phone call, and if you don't pick up, they call the next person on the list? Do they broadcast a message to you & everyone you know via every possible telecommunications & social media channel you've provided, and then give you N minutes to reply with "hey, I'm on my way to the hospital now!"

pkaye 8y ago
What I know is this. For each donor organ, they rank everyone one on multiple factors including compatibility, time on list, age, location, etc. Then they call up the first individual on the list and see if they are interested. If they don't get a confirmation in some time, they go to the next individual down the list. I know of one individual who didn't reply soon enough and missed out. The next match they got was 2 years down the line but it was a very good match. Edit: I think they do call up a couple people on the top of the list but the highest priority that calls in the time allotted will get it. Again this is still a mystery to me since I'm only half way through my wait time on list so no inquiries up to now.
silencio 8y ago
there's no way they'll give up after a single phone call. but the transplant team and the person potentially receiving the transplant only have one hour to respond to a notification of an available organ before UNOS moves on to the next person down the list. edit: mind you, this is not a straightforward yes/no - the transplant center needs to make sure that this particular organ donation will work at that particular time etc. - so there's a lot of factors involved. my stupidest (but i guess not entirely invalid) fear is that i'm listed as the primary contact for my dad in need of a kidney, and i basically can't go to any shows using yondr or any similar situation where i won't be near my phone for a while. or at least make sure that other people that will be contacted too know that i will not be available to pick up. edit: i guess i didn't answer the specific question though! at least the center where my dad is listed - they have a bunch of contact numbers for us and i have their numbers in my address book plus a request on my voicemail msg to call me twice to bypass DND if necessary. and my dad's renal case manager knows to text/email/call me too and her direct numbers are whitelisted in my phone, always. the 1 hour limit means we (the patient/family) will have less than 1 hour to respond. i also do believe that the center that gets the notification from UNOS also gets pinged if UNOS don't hear back at all whatsoever (like, a confirmation of the notification at minimum) within 10-15 minutes of the original notification. something like that. basically there's not really a situation where a single missed call will make or break it (unless literally someone is unreachable for the whole time.)
- PopeDotNinja 8y ago
  I'm gonna track down some people who can comment on how organ availability actually works. Who knows. Maybe there's a solution that could be wired up so you can go see a movie without worrying about whether or not a kidney suddenly becomes available.
  - silencio 8y ago
    the solution is my watch is always on and buzzes for calls :) and the center has a lot of different people to contact that can contact each other. (we have a little geographic redundancy here.) but the reality of this is that, if you're on a transplant list, you basically won't be doing any significant/major travel or be unreachable for long periods of time. i will say though, this depends on the organ i imagine. i think 1 hour is standard across the board, but lists/priority and other things change dramatically depending on which organ you need - kidneys are viable for longer than hearts, etc. UNOS/OPTN is where you want to look for information on organ distribution - https://unos.org/transplantation/faqs/ https://unos.org/transplantation/faqs/ "How does the matching process work?" and https://optn.transplant.hrsa.gov/learn/about-transplantation/donor-matching-system/ https://optn.transplant.hrsa.gov/learn/about-transplantation...
    - lozenge 8y ago
      For hearts you only get one call and a few minutes to decide whether you are ready. If you don't pick up they go straight to the next person. My friend used a basic Nokia phone with a heart-wrenching message on it to prevent theft. (I'm not in the US)
      - solotronics 8y ago
        What the fuck? How incredibly distopian that your life can depend so heavily on cell phone coverage.
  - C1sc0cat 8y ago
    Call the FCC had have the jammers ripped out
C1sc0cat 8y ago
From experience in the UK you give them a list of all your contact numbers and they call those in order - your meant to tell them if your out of the country When you get the call from the doctor on duty you discuss if your going for it or not - note they normally call two candidates and you both get to the designated hospital for final tests best match gets the kidney.

pkaye 8y ago

What I know is this. For each donor organ, they rank everyone one on multiple factors including compatibility, time on list, age, location, etc. Then they call up the first individual on the list and see if they are interested. If they don't get a confirmation in some time, they go to the next individual down the list. I know of one individual who didn't reply soon enough and missed out. The next match they got was 2 years down the line but it was a very good match. Edit: I think they do call up a couple people on the top of the list but the highest priority that calls in the time allotted will get it. Again this is still a mystery to me since I'm only half way through my wait time on list so no inquiries up to now.

silencio 8y ago

there's no way they'll give up after a single phone call. but the transplant team and the person potentially receiving the transplant only have one hour to respond to a notification of an available organ before UNOS moves on to the next person down the list. edit: mind you, this is not a straightforward yes/no - the transplant center needs to make sure that this particular organ donation will work at that particular time etc. - so there's a lot of factors involved. my stupidest (but i guess not entirely invalid) fear is that i'm listed as the primary contact for my dad in need of a kidney, and i basically can't go to any shows using yondr or any similar situation where i won't be near my phone for a while. or at least make sure that other people that will be contacted too know that i will not be available to pick up. edit: i guess i didn't answer the specific question though! at least the center where my dad is listed - they have a bunch of contact numbers for us and i have their numbers in my address book plus a request on my voicemail msg to call me twice to bypass DND if necessary. and my dad's renal case manager knows to text/email/call me too and her direct numbers are whitelisted in my phone, always. the 1 hour limit means we (the patient/family) will have less than 1 hour to respond. i also do believe that the center that gets the notification from UNOS also gets pinged if UNOS don't hear back at all whatsoever (like, a confirmation of the notification at minimum) within 10-15 minutes of the original notification. something like that. basically there's not really a situation where a single missed call will make or break it (unless literally someone is unreachable for the whole time.)

PopeDotNinja 8y ago
I'm gonna track down some people who can comment on how organ availability actually works. Who knows. Maybe there's a solution that could be wired up so you can go see a movie without worrying about whether or not a kidney suddenly becomes available.
- silencio 8y ago
  the solution is my watch is always on and buzzes for calls :) and the center has a lot of different people to contact that can contact each other. (we have a little geographic redundancy here.) but the reality of this is that, if you're on a transplant list, you basically won't be doing any significant/major travel or be unreachable for long periods of time. i will say though, this depends on the organ i imagine. i think 1 hour is standard across the board, but lists/priority and other things change dramatically depending on which organ you need - kidneys are viable for longer than hearts, etc. UNOS/OPTN is where you want to look for information on organ distribution - https://unos.org/transplantation/faqs/ https://unos.org/transplantation/faqs/ "How does the matching process work?" and https://optn.transplant.hrsa.gov/learn/about-transplantation/donor-matching-system/ https://optn.transplant.hrsa.gov/learn/about-transplantation...
  - lozenge 8y ago
    For hearts you only get one call and a few minutes to decide whether you are ready. If you don't pick up they go straight to the next person. My friend used a basic Nokia phone with a heart-wrenching message on it to prevent theft. (I'm not in the US)
    - solotronics 8y ago
      What the fuck? How incredibly distopian that your life can depend so heavily on cell phone coverage.
- C1sc0cat 8y ago
  Call the FCC had have the jammers ripped out

C1sc0cat 8y ago

From experience in the UK you give them a list of all your contact numbers and they call those in order - your meant to tell them if your out of the country When you get the call from the doctor on duty you discuss if your going for it or not - note they normally call two candidates and you both get to the designated hospital for final tests best match gets the kidney.