Hey all! I listened to half the episode yesterday, came back today to finish and it looks like the new teen driving episode is embedded here? Is my Substack screwy or am I substacking wrong 😂
Hi Rachel! Substack replaces the link in the post with the newest episode automatically. You should be able to find the Brian Rosenthal episode in your podcast player still. Let us know if you need help: hello@pantsuitpoliticsshow.com
I’m here to comment on the OUTSIDE OF POLITICS conversation:
WOMEN GET BETTER WITH EVERY DECADE THEY LIVE!!
My 30’s were better than my 20’s. My 40’s were better than my 30’s. My 50’s were AMAZING! Now in my 60’s and it’s just better and better. Women tend to live lives in relation to others and figure out who they are later in life. That has been my journey and it’s been so wonderful to feel myself come into my own. Here in my 60’s, I’m soft and welcoming and open. And also . . . you do NOT eff with me.
I somehow missed all of this NYTimes coverage, thanks for catching me up! I’m a bit confused by this reporter claiming that patients have “hundreds” of organs that their doctors refuse. That just doesn’t seem credible, in light of how many people are in the transplant registry/awaiting transplant. It also seems logical that some organs are not suitable/or simply not a good match, as even organs that ARE a match can require a lifetime of anti-rejection medications.
It’s absolutely horrific to think of OPOs pressuring families into donation and that is certainly worthy of reporting. But some of the other elements this reporter focused on make this reporting seem a bit unreliable. Maybe I’m really missing something here?
Hi Linda, Sarah and Beth have kindly offered to let me write something for this week's newsletter, from the perspective of someone who works in transplant. I hope you will find it helpful and that it answers this question and others!
This was really interesting. Just last week I was telling my husband that if something happens to me, I want to give everything. I have hesitations about donating to science or research… I’d rather everything go to people who have been waiting.
This was a really great discussion and I hope you have Brian back once he publishes his piece on Ed tech. 😂😂 In my world we review a little bit of research on decedents which includes donor tissue and data. Oddly these decedents are not considered “human subjects” but do have special HIPAA protections in research.
This was a tough listen for me. I work in kidney transplant (my opinions here are my own and not that of my employer). I am very familiar with all of this reporting, as you might imagine. I write this fully acknowledging that of course I am biased. Does this system need reform? Yes. Are many of these problems a result of government regulation that has been thrust upon organ transplant? Also yes. Have the many good actors in the transplant community been calling attention to these issues and asking for change for a long time? Very much yes.
I have been thinking all day about what to write here. I could explain the challenge of finding the right kidney for the right patient, and why one organ may be good for one patient and not another, and that unless you have done this for many years, those choices may be called into question. That the flip side of passing on a kidney for someone can be taking a kidney that doesn't end up working well, or not at all, and how hard it is to know what will happen in the future when you have to make a decision in minutes with whatever data on the donor they happen to have. And our program is held accountable for not taking enough organs, but also accountable if the organs we take do not perform well, so we have to make sure we are walking that tightrope exactly right or we end up being flagged as a center. And also most of these decisions are made at night, on weekends, during holidays, birthdays, etc. My kids have heard me talk over organ offers so many times they could probably do it themselves.
I want listeners to know that this is a flawed system with deeply caring people that are doing their best within it. I have yet to meet a transplant surgeon, physician, nurse, procurement team, etc. that wishes harm upon a recipient, donor, or donor family. Sadly, they probably exist, but I think they are infinitely more rare than you might think after hearing this reporting.
I do think that the reduction out-of-sequence offers (the "skipped" patients he refers to) is a good thing, and was needed. I do worry about people removing organ donation from their drivers licenses, and I was devastated to learn that you had done so, Sarah. I am glad you made your wishes known to your family, but unfortunately most people won't. I worry that deceased organ donation is going to continue to fall (there is already a pretty strong signal that it is happening already). I understand where the lack of trust is coming from, but there is a lot of nuance here that gets missed in a news article.
Thanks for sharing this and I look forward to reading your thoughts shared! My dad just received a kidney last December and this was a tough listen for me too.
It is so much to process and consider in an extremely tight time window. That is stressful enough without worrying about your center being flagged
I also am not completely negative about the discussion of organ donation being a money maker for hospitals. Hospitals are closing left and right for financial reasons. If a making some money allows them to continue to provide care to others, then it's not all bad.
Thank for this episode. My father is a organ donor recipient. 3 years ago he had a successful liver transplant which gave him a new lease on life. The generosity of organ donation is not lost on me.
One thing I would like to bring up is the idea of living donation. Most people are aware that they can donate a kidney to someone but not many people know they can sign up to be a living liver donor. The liver is an incredible organ that can regenerate on its own (healthy livers of course). A healthy person can donate up to 60% of their liver and within 8 weeks their body will regrow their liver back to 100%. While this isn’t an easy thing to do, it can be an incredible way to reduce that 100k+ people awaiting organs. My father actually had someone all lined up to donate to him, but two weeks before the operation a deceased donor was a great match for my dad and that ultimately was the liver he received. The American liver foundation has more information about this program.
Again thank you for this episode and bringing light to a complex but important part of modern medicine. I’m grateful ever day for the health my father now has and all the incredible people working in organ donation.
I want to start this comment with knowing that organ donation is very important. A college friend of mine’s husband is currently in ICU waiting on a heart transplant.
But.
Our family had a difficult experience with an OPO. Two years ago my father-in-law drowned. The paramedics revived him but he was on a ventilator for days before the doctor told us that there was no chance of him waking up. After the family finally made the decision to remove the ventilator the OPO showed up and told us that we couldn’t. That we had to leave him “alive” until they found donees for his organs because he’d checked the box. They said it could be days. We went back and forth with them for hours. And I don’t know what the folks in the ICU said to the OPO but they got them to acquiesce to letting us turn off the ventilator. But they made a really horrible day so much worse for us that everyone in the family checked their license to ensure they’d not checked the box.
I work in cornea transplant, though our call center handles the family calls for all the opo in our area. And I’m not here repping my employer ;)
Corneas are amazing because they’re universal. No blood so no blood type or other matching. Our surgeons are also picky, sometimes to their detriment because the things that they get hung up on don’t scientifically hold up as important. But because corneas don’t have as tight a timeline and can go to whomever, those transplants just get booked and expect to have a graft available. And companies are working to expand availability through cloning/growing in the lab.
It was an interesting listen today. I have an uncle and a cousin who have gotten livers, and a different uncle who got a heart, so I’m super thankful for donation. My dad was always paranoid about being unplugged to get his organs and I’m disheartened to hear that’s been an issue. (He was not a donor, he died at home of aggressive cancer that had filled his abdomen)
Thank you for pursuing the reporter to get the story. I look forward to his reporting on the gd proliferation of unnecessary tech in schools.
I haven’t listened to the episode yet, but the idea of listening to a podcast of Sarah and Beth at 90 has me teary 🥺 ❤️ may we all be so blessed (if that aligns with what they want for their lives)
ahh thanks Karin. So, where to start.... so, in order to get on the list you have to start dialysis. My fiancé started nightly peritoneal dialysis last November and we went to our first hospital assessment in December or January. After the hospital multidisciplinary team reviews your case, you're officially listed. Your doctor will send referrals to different hospitals within a certain radius and you must go to each and spend about a day there meeting with social worker, doctor, finance person, etc. etc. Further, in order to be listed you must have a specified support person and that person MUST have a car and must be able/agree to attend each appointment with you and be available if/when the transplant call finally comes. We are now listed at 4 different hospitals - which they do to try and cut down wait times. However, he still has an estimated 5 years to wait until transplant. While on the list you must always be prepared for a phone call and to be able to travel to one of your listed hospitals within approx. 8 hours WITH your support person, as once they call you that is the time you have to get there before they offer to another person. For most people who have end stage renal disease (ESRD) they can be automatically enrolled into Medicare and are provided coverage. However, my fiancé is an Irish citizen here on a work visa... so as of now he does not qualify and thus we are billed for everything. (Dialysis appts/solutions/treatments/doctors/medication/hospital visits/etc). He is a scientist and works for a hospital and has very decent health insurance, but as you can guess, the bills are in the thousands. (We are currently awaiting a medicare appt to discuss if/when he can qualify with his work visa, as there's potentially a chance that after 5 years of work here he can). All in all, its a long, shitty situation but we are incredibly fortunate to have transportation and that my boss has been very generous with giving me time to attend appts etc. That is absolutely not the case for a majority of people on the list.
(this is my SparkNotes synopsis of our individual experience that I've typed out before a meeting at work ;) ) I 'm open to any /all questions and to be supportive to anyone else who is potentially going through the same thing.
Hey all! I listened to half the episode yesterday, came back today to finish and it looks like the new teen driving episode is embedded here? Is my Substack screwy or am I substacking wrong 😂
Hi Rachel! Substack replaces the link in the post with the newest episode automatically. You should be able to find the Brian Rosenthal episode in your podcast player still. Let us know if you need help: hello@pantsuitpoliticsshow.com
I’m here to comment on the OUTSIDE OF POLITICS conversation:
WOMEN GET BETTER WITH EVERY DECADE THEY LIVE!!
My 30’s were better than my 20’s. My 40’s were better than my 30’s. My 50’s were AMAZING! Now in my 60’s and it’s just better and better. Women tend to live lives in relation to others and figure out who they are later in life. That has been my journey and it’s been so wonderful to feel myself come into my own. Here in my 60’s, I’m soft and welcoming and open. And also . . . you do NOT eff with me.
I somehow missed all of this NYTimes coverage, thanks for catching me up! I’m a bit confused by this reporter claiming that patients have “hundreds” of organs that their doctors refuse. That just doesn’t seem credible, in light of how many people are in the transplant registry/awaiting transplant. It also seems logical that some organs are not suitable/or simply not a good match, as even organs that ARE a match can require a lifetime of anti-rejection medications.
It’s absolutely horrific to think of OPOs pressuring families into donation and that is certainly worthy of reporting. But some of the other elements this reporter focused on make this reporting seem a bit unreliable. Maybe I’m really missing something here?
I just finally listened to this episode, and I also have that question. I wish he had talked more about what he means by doctors being "too choosy."
Hi Linda, Sarah and Beth have kindly offered to let me write something for this week's newsletter, from the perspective of someone who works in transplant. I hope you will find it helpful and that it answers this question and others!
I just read your response and it was very helpful. Thank you!
I’m so glad!
This was really interesting. Just last week I was telling my husband that if something happens to me, I want to give everything. I have hesitations about donating to science or research… I’d rather everything go to people who have been waiting.
I think Beth summed up my life with, “having the best of intentions, but letting it languish.” 🙂
This was a really great discussion and I hope you have Brian back once he publishes his piece on Ed tech. 😂😂 In my world we review a little bit of research on decedents which includes donor tissue and data. Oddly these decedents are not considered “human subjects” but do have special HIPAA protections in research.
This was a tough listen for me. I work in kidney transplant (my opinions here are my own and not that of my employer). I am very familiar with all of this reporting, as you might imagine. I write this fully acknowledging that of course I am biased. Does this system need reform? Yes. Are many of these problems a result of government regulation that has been thrust upon organ transplant? Also yes. Have the many good actors in the transplant community been calling attention to these issues and asking for change for a long time? Very much yes.
I have been thinking all day about what to write here. I could explain the challenge of finding the right kidney for the right patient, and why one organ may be good for one patient and not another, and that unless you have done this for many years, those choices may be called into question. That the flip side of passing on a kidney for someone can be taking a kidney that doesn't end up working well, or not at all, and how hard it is to know what will happen in the future when you have to make a decision in minutes with whatever data on the donor they happen to have. And our program is held accountable for not taking enough organs, but also accountable if the organs we take do not perform well, so we have to make sure we are walking that tightrope exactly right or we end up being flagged as a center. And also most of these decisions are made at night, on weekends, during holidays, birthdays, etc. My kids have heard me talk over organ offers so many times they could probably do it themselves.
I want listeners to know that this is a flawed system with deeply caring people that are doing their best within it. I have yet to meet a transplant surgeon, physician, nurse, procurement team, etc. that wishes harm upon a recipient, donor, or donor family. Sadly, they probably exist, but I think they are infinitely more rare than you might think after hearing this reporting.
I do think that the reduction out-of-sequence offers (the "skipped" patients he refers to) is a good thing, and was needed. I do worry about people removing organ donation from their drivers licenses, and I was devastated to learn that you had done so, Sarah. I am glad you made your wishes known to your family, but unfortunately most people won't. I worry that deceased organ donation is going to continue to fall (there is already a pretty strong signal that it is happening already). I understand where the lack of trust is coming from, but there is a lot of nuance here that gets missed in a news article.
Happy Birthday, Sarah!
Thanks for sharing this and I look forward to reading your thoughts shared! My dad just received a kidney last December and this was a tough listen for me too.
It is so much to process and consider in an extremely tight time window. That is stressful enough without worrying about your center being flagged
I also am not completely negative about the discussion of organ donation being a money maker for hospitals. Hospitals are closing left and right for financial reasons. If a making some money allows them to continue to provide care to others, then it's not all bad.
Thank for this episode. My father is a organ donor recipient. 3 years ago he had a successful liver transplant which gave him a new lease on life. The generosity of organ donation is not lost on me.
One thing I would like to bring up is the idea of living donation. Most people are aware that they can donate a kidney to someone but not many people know they can sign up to be a living liver donor. The liver is an incredible organ that can regenerate on its own (healthy livers of course). A healthy person can donate up to 60% of their liver and within 8 weeks their body will regrow their liver back to 100%. While this isn’t an easy thing to do, it can be an incredible way to reduce that 100k+ people awaiting organs. My father actually had someone all lined up to donate to him, but two weeks before the operation a deceased donor was a great match for my dad and that ultimately was the liver he received. The American liver foundation has more information about this program.
Again thank you for this episode and bringing light to a complex but important part of modern medicine. I’m grateful ever day for the health my father now has and all the incredible people working in organ donation.
Yes!! Our living liver and living kidney donors are the most amazing people!
I want to start this comment with knowing that organ donation is very important. A college friend of mine’s husband is currently in ICU waiting on a heart transplant.
But.
Our family had a difficult experience with an OPO. Two years ago my father-in-law drowned. The paramedics revived him but he was on a ventilator for days before the doctor told us that there was no chance of him waking up. After the family finally made the decision to remove the ventilator the OPO showed up and told us that we couldn’t. That we had to leave him “alive” until they found donees for his organs because he’d checked the box. They said it could be days. We went back and forth with them for hours. And I don’t know what the folks in the ICU said to the OPO but they got them to acquiesce to letting us turn off the ventilator. But they made a really horrible day so much worse for us that everyone in the family checked their license to ensure they’d not checked the box.
Amy, I am so sorry that this happened to you and your family.
This was a fascinating episode! I appreciate you bringing it to us!
Also: I am here to tell you that being 45 just brings you that much closer to being 50 and that is a good thing. I promise.
I work in cornea transplant, though our call center handles the family calls for all the opo in our area. And I’m not here repping my employer ;)
Corneas are amazing because they’re universal. No blood so no blood type or other matching. Our surgeons are also picky, sometimes to their detriment because the things that they get hung up on don’t scientifically hold up as important. But because corneas don’t have as tight a timeline and can go to whomever, those transplants just get booked and expect to have a graft available. And companies are working to expand availability through cloning/growing in the lab.
It was an interesting listen today. I have an uncle and a cousin who have gotten livers, and a different uncle who got a heart, so I’m super thankful for donation. My dad was always paranoid about being unplugged to get his organs and I’m disheartened to hear that’s been an issue. (He was not a donor, he died at home of aggressive cancer that had filled his abdomen)
Thank you for pursuing the reporter to get the story. I look forward to his reporting on the gd proliferation of unnecessary tech in schools.
I've always been a big advocate of organ donation and was horrified by the recent headlines. Thanks for this conversation.
I'm here for Pantsuit Politics until y'all are 90, even if Beth is cheering from the sidelines :)
I haven’t listened to the episode yet, but the idea of listening to a podcast of Sarah and Beth at 90 has me teary 🥺 ❤️ may we all be so blessed (if that aligns with what they want for their lives)
As the partner of someone on the list... thank you for doing this episode. I have so many thoughts and so much I can share if anyone is interested <3
I am always interested to hear the perspective of someone that is living this.
ahh thanks Karin. So, where to start.... so, in order to get on the list you have to start dialysis. My fiancé started nightly peritoneal dialysis last November and we went to our first hospital assessment in December or January. After the hospital multidisciplinary team reviews your case, you're officially listed. Your doctor will send referrals to different hospitals within a certain radius and you must go to each and spend about a day there meeting with social worker, doctor, finance person, etc. etc. Further, in order to be listed you must have a specified support person and that person MUST have a car and must be able/agree to attend each appointment with you and be available if/when the transplant call finally comes. We are now listed at 4 different hospitals - which they do to try and cut down wait times. However, he still has an estimated 5 years to wait until transplant. While on the list you must always be prepared for a phone call and to be able to travel to one of your listed hospitals within approx. 8 hours WITH your support person, as once they call you that is the time you have to get there before they offer to another person. For most people who have end stage renal disease (ESRD) they can be automatically enrolled into Medicare and are provided coverage. However, my fiancé is an Irish citizen here on a work visa... so as of now he does not qualify and thus we are billed for everything. (Dialysis appts/solutions/treatments/doctors/medication/hospital visits/etc). He is a scientist and works for a hospital and has very decent health insurance, but as you can guess, the bills are in the thousands. (We are currently awaiting a medicare appt to discuss if/when he can qualify with his work visa, as there's potentially a chance that after 5 years of work here he can). All in all, its a long, shitty situation but we are incredibly fortunate to have transportation and that my boss has been very generous with giving me time to attend appts etc. That is absolutely not the case for a majority of people on the list.
(this is my SparkNotes synopsis of our individual experience that I've typed out before a meeting at work ;) ) I 'm open to any /all questions and to be supportive to anyone else who is potentially going through the same thing.
Love to all, harm to none xxxxx -Kat