Kidney Transplant Conversations

Kidney Transplant Conversations features diverse voices and experiences of donating, receiving, and caring for this gift of life. Over the coming months each new episode will feature interviews with patients, caregivers, advocates, donors, healthcare providers, and community leaders.

At its highest level, our podcast series focuses on quality healthcare delivery, highlighting the innovative approaches kidney transplant recipients and providers are applying to improve care. Along the way, we’ll explore all the stages of the kidney transplant journey and invite our guests to share their experiences and insights. We’ll also look at things like health disparities in renal transplant, identifying where and why some groups don’t do as well when compared to others, and discuss what we can do to close the gap. This will include explorations of inclusion, diversity, equity and access (also known by the acronym IDEA), which are all subjects central to the purpose of this podcast.

We invite you to subscribe and let Kidney Transplant Conversations keep you connected, informed and inspired with a constant flow of new thoughts and ideas.

Send suggestions for guests and topics to: rolf.taylor@projectadvocacy.com

How the UNC Chapel Hill Latino Transplant Clinic is increasing access through culturally competent care. UNC Chapel Hill Latino Transplant Clinic, Part 1

Featuring Transplant Social Worker Daniela Matz and clinic founder Dr. Pablo Serrano.

In our last episode we met José and Xiomara Flores and heard about their five-year journey from kidney disease diagnosis to their live donor transplant, which took place at the University of North Carolina Transplant Latino Transplant Clinic. The clinic is the culmination of a very intentional vision, a strategic decision to integrate a Latino-focused Transplant Clinic within the Abdominal Transplant Division at UNC Chapel Hill. Since being established in 2018, they have gone on to demonstrate how workforce diversity and cultural competency go hand in hand in the delivery of quality care.

In today’s episode, transplant social worker Daniela Matz and clinic founder Dr. Pablo Serrano look back on Jose and Xiomara’s story, share with us insights into how the clinic works, and how they have been able to reduce renal transplant disparities.

All views and opinions expressed in this podcast reflect those of the participants.

We thank the participants and advisors who helped create this podcast, and our underwriter, Veloxis Pharmaceuticals.

© Project Advocacy, 2021 

Resources relevant to Episodes 2 & 3 of Kidney Transplant Conversations:

Welcome to Infórmate            

El objetivo de ésta página bilingüe es educar a los hispanos / latinos acerca de la donación de riñón en vida.

The goal of this bilingual page is to educate Hispanics / Latinos about living kidney donation.

http://informate.org/

National Kidney Foundation:    

La información más importante sobre la enfermedad renal.

Provides lots of great information about kidney disease from prevention to transplant, including living donation.

https://www.kidney.org/espanol 

American Kidney Fund             

Nuestra misión es ayudar a las personas a combatir la enfermedad de los riñones y vivir una vida más sana.

Information plus financial assistance opportunities.

https://www.kidneyfund.org/en-espanol/ 

National Foundation for Transplants    

Cómo eliminar las barreras financieras para los donantes vivos.

Removing financial barriers to transplantation. 

https://transplants.org/resources/

Children’s Organ Transplant Association: 

Recaudación de fondos y apoyo para niños y adultos jóvenes con poliquistosis renal.

Fundraising and support for children and young adults with polycystic kidney disease.

www.cota.org 

Episode 3 Full Transcript

Host:          Welcome to Episode 3 of Kidney Transplant Conversations. Our regular podcast, dedicated to the kidney transplant journey, exploring quality care delivery, inclusion, diversity, equity and access. I'm Rolf Taylor, your host and series producer.

All views and opinions expressed in this podcast reflect those of the participants.

In our last episode, we met with Jose and Xiomara Flores, and heard about their five-year journey from kidney disease diagnosis to their live donor transplant, which took place at the University of North Carolina – Transplant Latino Kidney Clinic during the pandemic in late 2020. For our guests today, this story is the culmination of a very intentional vision, a strategic decision to integrate a Latino focused kidney clinic with the abdominal transplant division at UNC Chapel Hill. Since being established in 2018, they’ve gone on to demonstrate how workforce diversity and cultural competency go hand-in-hand in the delivery of quality care. We’re delighted that the clinic’s transplant social worker, Daniela Matts and clinic founder, Dr. Pablo Serrano could join us today for part two, to look back on Jose and Xiomara’s story, share with us insights into how the clinic works, and how they’ve been able to reduce transplant disparities.

                  So, now, we’re going to visit with two leaders from the University of North Carolina Transplant Latino Kidney Clinic, Daniela Matz and Dr. Pablo Serrano. Daniela is a transplant social worker and in addition to discussing her experiences at the clinic, she’s going to talk about her role as Chair of Multicultural Issues at the Society of Transplant Social Workers. Dr. Pablo Serrano is Assistant Professor of Transplant Surgery at UNC. He founded the Latino Kidney Clinic with a vision to ensure culturally sensitive care provision and to address the disparity of relatively low numbers of Latinx patients accessing kidney transplants.

                  So, first of all, thank you so much for bringing your patients, Jose and Xiomara Flores to the podcast for the first part of our discussion about the Latino Kidney Clinic. Daniela, you mentioned during or conversation with Jose and Xiomara that it’s not just about language and translation. It’s really about the Latino cultural. So, your patients feel safe and secure and comfortable to ask questions, to understand the process, and I think that came over really, clearly with Jose and Xiomara. Sometimes, we forget how important feeling comfortable and secure is to having open and authentic communication that allows a partnership between patients, caregivers and providers. Could you expand on the importance of that aspect, as you see it?

Daniela:      That is crucial. Like Xiomara said I think it starts with the language, of course. A lot of times, when other providers don’t speak the language, they may cut things a little short and don’t explain everything and then, of course, there is the cultural aspect, understanding the culture, understanding where people are coming from, especially, I think, sometimes, with undocumented immigrants looking for transplants. It is very important that they trust us and they’re able to work with us.

Host:          I think something else that came over was that the caregiver role is really crucial in your overall assessment of preparing for transplanted and, particularly, a living donor transplant. There’d been, previously, an assumption that Xiomara couldn’t be a caregiver and a donor and, in fact, culturally, this was not for them a difficult problem to solve. They were able to get extra help from their family. So, it seems like prudent, cautious and risk adverse systems can sometimes penalize certain people. So, patients and donors really need to be aware of this and work with the social work team to put in place whatever resources they can. What happens in the absence of an obvious caregiver, say for an unmarried person, for example?

Daniela:      Well, unfortunately or fortunately, because they do need a lot of help, patients do need to have caregivers. It’s also a requirement from Medicare and Medicaid. And so, if there’s not a family member who can help, we work on asking for support from the community, from friends and people are able to find others that are willing to help.

Host:          So, you can, basically, volunteer to be a helper in that situation, a friend or member of the family can volunteer to take on that role.

Daniela:      For sure, I always tell patients that people want to help. People like to feel good about themselves and sometimes they just need to know that you need the help. Patients, sometimes with their support, it may not be just taking care of the patient but helping with fundraising or helping with finding a donor. There are many ways that people help and work together.

Host:          Could I just ask you, Daniela, you have a special role with the Society of Transplant Social Workers, which is to be Chair of Multicultural Issues. Can you tell us a little bit about what that means?

Daniela:      Yes, a little group of social workers, they are from all over the West, work with different hospitals all over the West and some international, as well, in Canada and Puerto Rico. So, this is a group where we promote awareness and education regarding racial and cultural barriers. We have a conference every year to also promote education to all the transplant social workers. It’s a fairly new profession. So, we also meet every month. We talk about our challenges. We share ideas and what we are doing. So, we are really focused on promoting awareness and advocating to close the gap in transplant barriers.

Host:          It’s a wonderful model for taking care of patients and I think there’s every opportunity for this model to be adapted and applied in other categories, as well. Dr. Serrano, you came to UNC with a vision to improve access to lifesaving surgery. Can you just give us a little bit of background of what you had in mind when you started the Latino Kidney Clinic?

Dr. Serrano: So, I got the opportunity to come to you and see and one of my goals was to setup a Latino Transplant Clinic. We know that the Latinx population has a higher incidence of kidney disease. There’s a higher incidence of obesity. There’s a higher incidence of diabetes. Also, because your family members also have these issues, then, you have less donors or less people that are available to donate and to help you throughout this process. So, there’s multiple papers showing that there’s disparities that the Latinx population, the African American population and different minorities have less access to transplants, and we wanted to find a way to make this as equal as possible and try to reduce those barriers. So, we decided to come up with the Latino Transplant Clinic. We didn’t want it to be just a translation of our English clinic. We wanted it to be something that was culturally sensitive and that we could address the differences in our culture and how we behave as Latinx people.

Host:          So, when you first established the clinic, what was the kind of rate of kidney transplant in the Latino community in North Carolina?

Dr. Serrano: So, our numbers were having a lot less percentage of Latinx patients getting transplanted from our wait list. They had a longer wait time than the rest of our population. Our numbers have got a lot better. Our referrals have increased over 200%. Our time to our first appointment has been reduced by about 50%. We have almost a 99% show rate to our clinic, and we have increased our number of transplants and living donor transplants, also.

Host:          So, what is happening in the clinic that is allowing you to move the needle in this way?

Dr. Serrano: The clinic is a great effort. We have a lot of people working in the clinic. We have an administrative person that is bilingual, she picks up the phone in Spanish or addresses the voicemails that we have in Spanish and sets up the appointments for the patients, making sure they understand where they can come, at what time. Depending on the dialysis requirements, we have our transplant coordinator who goes and arranges all the process of our patients. We have Maria Mendez that is or financial social worker that is a key part of the clinic, dealing with all the bureaucracy in healthcare and dealing with all the cost of it. We have Daniela that deals with all the social work issues, the caregiving and the follow-up. I see the medical side of the patients. What we found out is that with this clinic, a lot of patients got lost in the process because it was so complex to setup an appointment, through all those things with a translator, and having the patients come have a clear communication with a patient and making sure they understood exactly where they needed to be. This is a big hospital. They have to move around and sometimes just going from one study to another, if you don’t know where to call and you cannot call somebody quickly, you might not make it and then, lose that appointment and that would set you back a couple of weeks or maybe a month to get a new echocardiogram or another CT or things like that, and just having somebody that can help you through all that has made everything so much efficient, makes us deal with all those roadblocks and get the patient ready for transplant, and the ones that are ready into the OR, as soon as we can.

Daniela:      I’ll echo everything Dr. Serrano said. I think, also, one thing that I’m so grateful for, all the people who work in the Latino Clinic, they’re so passionate about everything they do. Xiomara has really been wonderful, really following up with patients and so, I think that also makes a huge difference.

Host:          Just to be clear, that’s not the same Xiomara that we met last week in our episode?

Daniela:      No, it’s a different one.

Host:          I just wanted to be clear for our listeners. I was very struck by a couple of things when we talked with Jose. One of them was that he had actually been waiting for five years. Then, when he came to your clinic, it sounds like a big part of the success was being able to remove the roadblocks. The other thing that was really striking was just how deeply he felt, a sense of loss for those five years.

Dr. Serrano: I think that’s part of what we’re focusing on. A lot of times, you know, our center is very busy and we have a ton of patients and that happens in all the healthcare, in general, in the United States. When you have, as you say, one of those roadblocks that could be that you only speak one language and you need a translator or you live in a different area or you do not have access to healthcare or different things that we can help with, you sort of get sent to the back of the line or somebody else is going to deal with you, and that’s what happened with Jose and Xiomara. They had gone to a couple of places, and just because of that, they had said that she could not be a living donor for him that she had to be the caregiver. People were not thorough at trying to find if they had more family members that could do the job and then Xiomara could be tested. The moment that they came here, one of the focusses of the clinic is that we know that Latino families, Latinx families tend to have a lot of siblings and making sure that, as long as they know that it’s safe and you can tell the head of the family that this is a safe process, that living donation success rates are very, very good. The outcomes are better than a cadaveric transplant and you can save all this wait time. They can have more people tested and have a good caregiver and a good donor to be able to help their family members. Also, you are helping the people that are waiting for a kidney because you are taking somebody out of that line and getting people ahead, so that everybody benefits.

Host:          Also, it is statistically unusual that you would have the partner of a patient actually be a good match.

Dr. Serrano: Exactly, so that was a beautiful story, also. Obviously, normally, if you’re related by blood, obviously, your chances of being compatible are way higher because your chances of having the same blood group are very, very high. If you’re not that it becomes more difficult and there’s ways that we can find to help you through this process, but the fact that somebody that is not related by blood, a friend or a spouse, in this case, can be compatible, are not that common. So, I think that this scenario was great that we could do the testing and the crossmatch came back as negative and we could see that they were both compatible and were able to be donor and recipient.

Host:          It’s just a wonderful story and I don’t think there was a dry eye in the house when they talk about, “Well, we knew we were a perfect match, anyway. We already knew that.”

Dr. Serrano: They are a great match. They have a great relationship. I think that this just made their bond even better. They’ve done pre-transplant, during the transplant and after transplant, they’ve always been smiling. They had a great attitude to it. Even though, Jose, talked about all these frustrating times, you know, in dialysis, I think he was still always hopeful and still looking for options to get transplanted.

Host:          Daniela, you are kind of on the frontline when it comes to dealing with what we might call the social determinants of health, as a transplant social worker. It seems like a lot of your success is around your ability to work through complexity but, of course, social determinants bring a great deal of complexity, potentially, to patients. Could you talk a little bit about what are some of the things that you do to overcome social determinants that might have disadvantaged a patient?

Daniela:      Yes, unfortunately, the social determinants of health is a systemic issue. So, we’re not going to fix that on our interactions but what we can do is it’s the social work model, really, to meet the people where they are and focus on their strength. So, if, let’s say, there are limited finances, but they can be really resourceful, or we know the resources that are available to them. We work with that. If they are problems with health literacy, we find the streams of caregivers that could be helping them navigate through this. If they need someone to talk to them, in a very simple way, where they can understand the expectations of transplant, we will do that. So, we try go meet people where they are and focus on strengths.

Dr. Serrano: We’ve seen that people want to come and want to get help, want to get transplanted. We keep getting patients. Every time, we have or schedule full. We’re seeing everybody with a nephrologist, with the social workers. They’re coming to their appointments. They’re coming up for follow-up. So, I think that it shows that this can be done safely, and everybody can benefit from it, the hospital, the patients, the community. So, I think that it’s something that can show the success of a well-run clinic.

Host:          Yes, I just wonder how many of those transplantations would not have taken place if it hadn’t been for you having a dedicated (Latino) clinic.

Dr. Serrano: Yes, for sure. I think that those are the happy moments when you go, and you see the patients we have transplanted and see how grateful they are and that’s what makes everything worth it. Knowing that we’re doing something to help the community and that the word-of-mouth, people say, “Oh, I came here because this patient that got transplanted here told me that you guys are great and that you were going to help us and that you were going to help me answer all my questions and that it’s going to be safe.” So, that’s what makes you think that you’re doing the right thing running the clinic.

Host:          Daniela, would you like to add to that?

Daniela:      Yes, I would just like to say, the word safety, I think is very important because, especially, when you think about emotional safety. I love the story of this patient that heard about the Latino Clinic, had been on dialysis for five years and she was working for a company that she was able to have time leave and family, but they kept telling her she couldn’t leave for appointments. She called her clinic and they passed her to me, and she says, “Well, I want to do this, but I can’t leave.” I said, “You know, you have an HR. Go talk to them. They have to let you leave.” She doesn’t speak English, so, I think that comes the fear, as well, along with being a foreigner. Anyway, she spoke. She went to HR. Of course, they’re like, “Yes, of course. You can make medical appointments.” She had five years and she was just transplanted this year.

Host:          That’s wonderful. So, again, what we’re hearing is the story of for five years, five years on dialysis, presumably.

Daniela:      Yes.

Host:          And then, there’s a breakthrough. There’s a way to unlock the door. It takes intervention. It takes problem solving to do that.

Daniela:      It takes them feeling comfortable coming to us.

Host:          There have been a lot of studies showing that a lot of people that are Spanish speaking, even though they have access to Medicare, a lot of times, they don’t know when they can use it or how they can use it. So, part of what we want to have in the clinic was this approach where we would teach them what they needed to do and, obviously, not everybody’s going to be a candidate, but we can help a lot of people that thought they were not candidates find a way to get transplanted. If you are in a place where you’re having trouble communicating, getting through the very complex bureaucracy of healthcare can be very, very hard and one of her goals is to help the patients through this.

Host:          Because the bureaucracy is really quite a labyrinth, isn’t it?

Dr. Serrano: That’s why Daniela does a great job of talking to patients before. Maria does a great job explaining all the financial situations and Xiomara [21:02 inaudible] helps the through all this whole process, also, telling them where to go, what can they apply for, what aides they can get or benefits they can use to make this process easier and faster.

Host:          Is that a case of actually running classes with groups?

Dr. Serrano: So, we actually run a class. Our setup, normally, is that the coordinator would have sort of a one-on-one with the patient and kind of discusses and they’ll get a class in the beginning. That’s what we do in our regular clinic. For our Latino Clinic, what we wanted to do was make a big classroom kind of event where everybody could show up with their families and we could explain everything to them. Because of the pandemic that has been a little bit rough, and we haven’t been able to set it up as we want to but that’s kind of our long-term goal, where we can have the patient with the family members and going through all this process explaining the loopholes and the places where they can ask for support to show them how it is safe. A lot of times, it’s very common, as Daniela said in the beginning that people don’t want to put their family members at risk and making them understand that their family wants to be with them. Right? That this time that they’re loose from being on dialysis as Jose said. You cannot go to parties, you cannot go on vacation, you cannot live those moments with your family, are times when your family would much rather go through a procedure and help you be with them and be healthy and live longer.

Host:          So, if you’re educating groups and families or you’re running a class or workshop style, are you starting from scratch?

Dr. Serrano: You have to always try to start and show them everything from the beginning, teach them from the whole transplant process, the medications, the surgery, how transplant works, donation, healthcare system, what they need to apply for, what they require. They’re going to have to have a caregiver and all those things. So, it is, we try go meet the patient since the beginning, so that nobody gets lost in this process from not having the knowledge to come up with.

Daniela:      I tell patients that this is a process of empowerment, as well, giving them all the information that they need and telling them the pros and the cons, and you can make informed decisions about everything. So, what Dr. Serrano said about starting from the beginning and providing the whole education is very important. I think we’re doing a great job about that.

Host:          So, hopefully, there’s going to be a way for you to convene your groups, even though, we’re in this, whose been vaccinated, who hasn’t been vaccinated? Is it safe to do this process? So, I wish you all the best with that and I guess you could use Zoom, but it isn’t the easiest way to meet with people. I’m sure face-to-face is better.

Dr. Serrano: Sure, sure and hopefully, we’re able to meet, again, face-to-face. Unfortunately, sometimes, with our Latinx population, it’s hard doing telemedicine or doing video visits due to a lot of them don’t have access to internet. They won’t have a smartphone. So, that also has been something we had to dealt with. Most of our clinics, during part of the pandemic, we did transition to telemedicine and having, especially, people that were coming from out of the city, have just like a virtual clinic. Our Latino clinic stayed the same and we still had it in person because of this. It was so hard to find a time when we could actually meet with the patient through a computer. We had to understand our population and know that this is the best way to help them.

Host:          What are your goals and hopes in terms of developing the clinic further?

Dr. Serrano: I feel we want to keep growing. We want to be able to keep doing more research and finding what other limiting factors are for people to come and get transplanted. There’s still a lot of people that don’t know about the clinic, that don’t know about the clinic, that don’t have access to healthcare that are lost in some part of the process, and we want to be able to help them. I hope that we can work a little bit more with the community and make this process, as Jose and Xiomara put it, it’s one day that suddenly your life changes. It’s not like a subtle event. One day they tell you where you’re going to have to go to dialysis and that’s going to take half of your life, and to go through all that fear, go to a new place and put your life in the hands of somebody else and do that through a translator is really, really hard. So, being able to talk to somebody in Spanish and talk about your culture, talk about the food, about your family and feeling at home, I think that it’s something key and that’s what we want to give to everybody. We want to be able to give that to everybody in North Carolina and whoever wants to visit from outside, access to that and be able to help as many people as we can.

Daniela:      We just want to help people and make them feel at home.

Host:          Well, you certainly have two wonderful ambassadors in Jose and Xiomara. When I asked her, “You feel okay after having your kidney removed?” She said, “Yes.” She said, “I want to tell you, I feel better. I feel better than before.” It was just so wonderful to see how positive and energized they were by that whole process that you made possible for them.

Dr. Serrano: Yes, it’s great seeing them. Every time that I talk to them, I think it’s a great feeling. They’re very, very thankful. They have been through a lot. Just like every other patient that has to go through end stage renal disease and then, all the confusion that all the changes in your life take you, and then, going through transplant and that uncertainty and having the donation process and they’ve done great through all this, always telling us what they need, how they feel and working together to make the best out of it with their family. We thought that they would be great ambassadors for the clinic and for transplant itself for people that, rightfully are, but can have doubts and can be scared about the process. They can show how when it’s successful, it’s a great way to help somebody else and continue with your life with a great quality of life.

Daniela:      I like the way that Xiomara Flores normalized being a donor and saying I’m helping my husband. Anybody can need a kidney one day and how she normalized that by she’s, I’m great. “I helped him and I’m doing great and I’m living a healthier life,” and it was wonderful to hear.

Host:          Yes, that whole motivation about living a healthier life and being conscious about self-care, when you have one kidney, now. Well, thank you so much. It’s been a wonderful collaboration and congratulations on your success and, particularly, congratulations in what was a very, very difficult year.

Dr. Serrano: Thank you so much, Rolf. Thank you for getting the word out and for this great interview and for getting the word of Jose and Xiomara out. Hopefully, we can keep helping more people like them and we’re just grateful to be here and happy to be helping.

Danielle:     Yes, I really appreciate this, Rolf. We were talking about the social determinants of health and how this is a big, systemic issue and think having places like this podcast, where we can talk about it, we can bring awareness, I think that’ll be important. It’s an important way to advocate for change. So, I really appreciate this.

Host:          Many thanks to Daniela Matz and Dr. Pablo Serrano for sharing their incites with us today. We’ve linked to some relevant resources that they recommended and they’re in the podcast description. Thank you to our listeners for joining us today. If you enjoyed the podcast, please consider sharing it with others and subscribing on any of the leading podcast platforms and SMART speakers. We also thank the participants and advisers who helped create this podcast and our underwriter, Veloxis Pharmaceuticals. Join us again soon for more kidney transplant conversations. Until next time, take care and be well.

Copyright: Project Advocacy 2021

In this episode we’ll hear from José a patient, and Xiomara, his wife and donor, as they describe the challenges they experienced in their quest for a kidney transplant, and the joy they have felt since then. We’ll also hear from transplant social worker Daniela Matz, who assisted them. 

The Census Bureau estimates that there are over 60 million Hispanics and Latinos living in the United States, and the Latinx population is the fastest growing minority. As many as 40 million are speaking Spanish as their first language. Although Hispanics and Latinos are more likely to experience kidney failure compared to other Americans, they are less likely to access kidney transplant as a solution, the resulting disparity means more years on dialysis, reduced quality of life, reduced life expectancy, and increased healthcare expenses. 

Part of the problem is the waitlist for a transplant, there simply aren’t enough organs to go around. If a living donor can be found, then that is a gamechanger. But here we find another disparity – because the process of live donor kidney transplantation can often elude our minority populations.

To address some of these issues, in 2018 Dr. Pablo Serrano established the Latino Transplant Clinic at the University of North Carolina (UNC) Division of Abdominal Transplantation, in Chapel Hill, NC, with the aim of providing culturally competent and culturally sensitive care. 

August is National Minority Donor Awareness Month (NMDAM). 

Founded in 1996 by the National Minority Organ Tissue Transplant Education Program (MOTTEP) to bring heightened awareness to donation and transplantation in multicultural communities. For more information and shareable resources please visit: 
https://www.donatelife.net/nmdam/

All views and opinions expressed in this podcast reflect those of the participants.

We thank the participants and advisors who helped create this podcast, and our underwriter, Veloxis Pharmaceuticals.

© Project Advocacy, 2021

Resources relevant to Episodes 2 of Kidney Transplant Conversations

Welcome to Infórmate  
El objetivo de ésta página bilingüe es educar a los hispanos / latinos acerca de la donación de riñón en vida. 
The goal of this bilingual page is to educate Hispanics / Latinos about living kidney donation.
http://informate.org/  

National Kidney Foundation:  
La información más importante sobre la enfermedad renal. 
Provides lots of great information about kidney disease from prevention to transplant, including living donation. 
https://www.kidney.org/espanol  

American Kidney Fund  
Nuestra misión es ayudar a las personas a combatir la enfermedad de los riñones y vivir una vida más sana. 
Information plus financial assistance opportunities. 
https://www.kidneyfund.org/en-espanol/  

National Foundation for Transplants 
Cómo eliminar las barreras financieras para los donantes vivos. 
Removing financial barriers to transplantation.  
https://transplants.org/resources/ 

Children’s Organ Transplant Association: 
Recaudación de fondos y apoyo para niños y adultos jóvenes con poliquistosis renal.
Fundraising and support for children and young adults with polycystic kidney disease. 
www.cota.org  

Episode 2 Full Transcript

Download transcript PDF 

Host: Welcome to Episode 2 of Kidney Transplant Conversations. Our podcast dedicated to the kidney transplant journey and exploring quality care delivery, inclusion, diversity, equity and access. I'm Rolf Taylor, your host and series producer. 

All views and opinions expressed in this podcast reflect those of the participants.

August is National Minority Donor Awareness Month. Founded in 1996, by the National Minority Organ Tissue Transplant Education Program to bring heightened awareness to donation and transplantation in multicultural communities, focusing primarily on African American, Hispanic, Asian, Pacific Islander and Native American communities. We’ll provide a link with more information in the episode description. Please, spread the word, if you can.

The census bureau estimates that there are over 60 million Latinos living in the United States, which is over 18% of the overall population and as many as 40 million are speaking Spanish as their first language. Although Hispanics and Latinos are more likely to experience kidney failure, compared to other Americans, they are less likely to access kidney transplant as a solution. The resulting disparity means more years on dialysis, reduced quality of life, and reduced life expectancy, not to mention the added expense. Part of the problem is the wait list for a transplant. There simply aren’t enough organs to go around, but if a living donor can be found that is a game changer. But here we find another disparity because the process of live donor kidney transplantation can often elude our minority populations disproportionately, particularly, Hispanic, Latino, Black and Asian people with kidney disease. 

Why do we have these disparities? 

Well, as Risa described in our first episode, living donation is complex. It takes a lot of time and many appointments and both patient and donor need plenty of support and the finances and logistics have to work out. But if you are from a different race or ethnicity than your provider, which is likely, because of the underrepresentation of minorities in the healthcare workforce, then, this will add to the complexity of the situation because you may not share the first language as your provider, and there are potentially cultural differences, too. 

Aware of the need to address these issues, in 2018, Dr. Pablo Serrano established the Latino Kidney Clinic at the University of North Carolina, Division of Abdominal Transplantation in Chapel Hill with the aim of providing culturally competent and culturally sensitive care. The approach has been a great success. Over the next two episodes, we’ll visit the clinic and hear from Jose a patient, Xiomara, his wife and donor. We’ll speak with transplant social worker, Daniela Matz and clinic founder, Dr. Pablo Serrano.

Jose and Xiomara Flores came to the United States from Panama in 1999 and established new careers and built a family, but in 2016, a lab test revealed, Jose had some kidney disease and the need for dialysis, and for several years, Jose was receiving dialysis and he was waitlisted for a transplant with a couple of centers. So, to tell us more about their story, welcome Jose and his wife Xiomara.

Jose: Hello.

Xiomara: Hello, thank you, to you for your invitation.

Host: So, for our listeners, could you tell us just a little bit about yourselves?

Xiomara: Well, we living over here in North Carolina from about 22 years. I got my own business. I love to work in the field of education. My own daycare, being at home and take care of my family at the same time I take care of my business. The most wonderful thing that happened to me, so far. I still learning English because my native language is Spanish, but I tried my best.

Host: Lovely to have you with us today. Thank you for joining us. Jose.

Jose: I’m 56 years old. I met Xiomara in Panama while I was stationed in Panama during my military service. We got married and we moved to North Carolina. We’ve been living here in Fayetteville for over 22 years, Fayetteville, North Carolina and I’ve been working as a warehouse supply supervisor. We have two siblings, our son, Jose, is 28 years old and our daughter, Genesis, which was unexpected, that’s why we call her Genesis, as a new beginning. She’s 15 years old. Pretty much, I’ve always been an active person. I love the outdoors. Xiomara and I have been married for over 30 years.

Host: Wow, congratulations, that’s wonderful.

Jose: Thank you.

Xiomara: Thank you.

Host: So, a few years ago, you found out from a test that you had some kidney disease. Was that a complete surprise or had there been some telltale signs?

Jose: Rolf, I’ll tell you, absolutely, it was a total surprise. I was in shock. I went for a routine, normal lab work. I’m a diabetic and my primary care provider asked me to do some labs. In the evening, I had a phone call from the clinic in which I was going to, told me that I needed to go in immediately, that I needed dialysis. And that was the first time I’ve ever heard the word dialysis. I said, “No, I don’t go to dialysis and I don’t do any dialysis.”

They went ahead and they redid another test. They said my kidneys were not functioning. They were not doing what they were supposed to do and my creatinine levels were spiked high. I would have to stay overnight to see if they could do some treatment to, I guess wakeup my organ so it can kickstart somehow. The next thing I know I was under surgery to put a port in my chest that is going to go straight to my heart and start doing the dialysis immediately, otherwise, they said I would only probably last like maybe a week or so without being dialyzed. So, yeah, it was a total shock for me and it surprised the doctors, too, because they told me I could have dropped dead anytime.

Host: So, the doctors kind of felt like you should have been feeling unwell?

Jose: Right, I was really, still not accepting the fact I had something wrong with my kidneys or something was wrong. It was very frightening at the beginning. There was so much information that I had to soak in, so much other detailed things that I had to take care of, I was always thinking that I would wakeup the next day and no, this is just a bad dream. I still didn’t accept it for a while, until they started really being invasive on me.

Host: So, you went from an active life, family life, busy with work. So, then, you went into dialysis.

Jose: Five and a half years.

Host: How was that going for dialysis for that period of time?

Jose: I always told my kids that I lost five and a half years of spending time with them. Every time we had a family function or vacation, I couldn’t go, I couldn’t attend because of all the restrictions. I had dialysis three times a week, for four and a half hours, plus some prep time. So, you’re talking about six hours a day and they always ask me, when can we do something, and this time when you normally spend a lot of time with your family and kids, while they’re growing, doing family things. Family fun, family activities, going on vacation every year and pretty much stopped traveling for five years.

Host: During that time, did you have discussions about transplantation?

Jose: My social worker at the facility I was going to she was trying to help me out but two other hospitals, I started to do their test requirements to get on the list. It took me about two and a half years to get listed and from there on, they kept telling me, I’m on the list, I’m on the top and it seems like it wasn’t happening.

Host: Xiomara, during that time did you think about the possibility that you could donate a kidney?

Xiomara: Day one, I wanted to be the donor. If there any possibilities that I could be a donor, I want to be. They tell me, no, you can’t. You have another role. You’re going to be a caregiver. You will now be the support person for you husband. They just tell me, no. That was very frustrating for me because I want to just try me, they do test me or something.

Host: So, how did you hear about the Latino Kidney Clinic?

Jose: During dialysis one day, I overheard one of my other dialysis patients, that he was going to go to UNC. Xiomara and I did the research and we found out they had a Latino Kidney Transplant Center.

Host: Can you remember back to that time what struck you as different about the approach of the clinic?

Xiomara: What struck me the most was that when I asked them first, can I be the donor, they said, yes. The second best thing that got me so was they had the Spanish speaking staff member. Everybody in the Latino Transplant. I said, “Wow, it’s much better because it’s my first language and I feel more confident in it.” Of course, when I’m out there with Jose, I try my best, but some words that I need comprehension very well is going to be my language. I said, “Yes, this is the place,” and they said yes to me. I can be tested to be a donor and they speak Spanish. Wonderful. 

My surgery doctor, Dr. Serrano speaks Spanish. I said, “What, he’s speaking Spanish.” Wonderful, when you’re concerned about your health, you need to know really what they’re talking in black and white, while you’re expecting, while you’re going through, while everything is being tested, you need to know.

Host: So, you agreed to be tested for compatibility. 

Xiomara: Yes.

Host: Tell us about what happened when you got the results back.

Xiomara: Oh, my God, I remember like it was yesterday when they called me in the early December. I don’t remember the date was, the 4th or the 7th, but my nurse that called me and they told me it was Amy. She told me, “Ms. Flores, congratulations. You’ve been tested and you’re the perfect match for your husband.” 

And she said this is something wonderful because we don’t have that too much often. I started jumping and screaming. I was so happy and Jose was close to me, and he told me, “I know that in the beginning you were my perfect match. We always said that.” Wonderful. I tell a lot of people, we have to be more sensitive with this situation. Today, it was my husband but tomorrow it can be a brother, a person that needs you. Somebody needs you over there to be a living a donor.

Host: Were your family and your friends concerned that you were going to go down that path?

Jose: A lot of our friends gave us good, positive advice. Of course, there’s always somebody that’s going to say, “Hey, what about you? What about yourself? You’re going to give an organ that you normally would have two of and you’re going to be impaired for the rest of your life.” She decided. There was no force that made her choose otherwise but she was her own. It was her own decision that she went ahead and said, “I want to do it. I want to go ahead and help my husband.” 

From there on, friends and family supported us. They couldn’t believe that she was a perfect match and I kept telling everybody, “We’ve been a perfect match for 30 years.” So, I mean there’s no difference, now, then, what it was 30 years ago.

Host: So, it’s a beautiful story going through that process of all of the testing and the talking and the decision making, medically complicated, logistically complicated. Can you imagine that you could have done that if you hadn’t been in a clinic that was really quite focused on being able to speak Spanish with you?

Jose: For her it would be a much bigger battle because I’m fluent in English. She is not as fluent as I am. So, I know sometimes, we would have to be separated at one point or the other and she probably would have been lost with information or the lack of information given or to question the procedure and what needs to be done. So, yes, it was very important. It was very critical that she felt comfortable, she felt at ease speaking Spanish with the nurses, the staff, the doctors and it made me feel comfortable that she was also at ease because, of course, I wasn’t going to be with her all the time.

Host: It’s striking to me the contrast between what happened when you first suggested that Xiomara could be a donor back several years ago and the answer was no. And then, this time, the answer was yes. The Latino Kidney Clinic believed in you in a way that the other clinic didn’t feel so confident. So, they maybe understood you better and were able to make a judgment about being able to go forward with this. 

I want to bring in, at this time, Daniella Matts, who is a transplant social worker with the Latino Kidney Clinic and I just want to invite you to comment on that kind of dynamic of in the moment, when you’re making those decisions, does it really make a difference for you to be able to get behind that process, when you can know people better because of language and communications.

Daniela: Yes, I think there is a difference, not only, in understanding the language, but, also, understanding the Latino culture. We know as Latinos that we take care of our families and we are going to make it happen. We are going to work to (make it) happen. So, if your mother could not be the caregiver, they came up with a plan. Somebody else was going to be the caregiver, so she could donate the kidney. I think understanding the culture and where the Latino population, how important family, how important faith is, it’s very helpful.

Host: Well, you know, I think all of our listeners will have been smiling to hear that story about how you felt when you got your test results back and you were able to proceed, but could you tell us a little bit about the recovery phase? You have surgery, you have recovery. How was it during those weeks after you actually had the transplant?

Xiomara: You mean the next day after my transplant? I woke up and I told the nurse, “When can I see my husband? I want to go to see him.” They looked at me like, what are you talking about? You need to rest. I said, “No, I feel okay. I feel good like nothing happened to me.” The recovery was great. Everything was smooth like Dr. Serrano told me. So far, until now, I’m okay. Nothing really hurt. Nothing missing because people got the idea that, “Oh, you’re going to feel like something is missing in your insides.” And, nope.

Jose: I envy her because her recovery phase was such shorter and easier. I mean, but, thank goodness, I mean for her because even though she was a donor, she pretty much got out of the hospital. Nobody likes to be in the hospital anyways. She was out the third day. I was in the hospital recovering, which was my situation was more delicate, I was in there for probably a month. 

Being in there a month, I could pretty much tell you, I knew the menu for food every single day I had the menu done every time. So, I knew what was going to happen Monday or Tuesday or Wednesday. They covered all the bases. They went ahead and had everything taken care of. I know I wasn’t going home questioning any of the procedure or questioning any of what I needed to do education wise, you know, even though, sometimes, I was a little bit tired I went ahead and I got everything down pat and I felt comfortable leaving. In that part, I felt good leaving, but, at the same time, I was very grateful for all the staff and the members of, not only the Latino Kidney Center, but even the recovery team at the main hospital.

Xiomara: It was wonderful. Jose supposed to be out early. Something happened to him but it was nothing. It was one something that happened. You explain.

Jose: During the recovery phase, after certain lab work that was taken care of, they were monitoring me 24/7, an they found out that somehow or the other, the kidney was rejecting. Not rejecting me or the transplant. The kidney was rejecting some of the medication that was given to it. So, the kidney was working fine but the kidney was not accepting the medication given to him. So, they had to do a biopsy and they went ahead and made a study of what the biopsy had given to them. So, the went ahead and adjusted the medication in which, of course, I had to go ahead and spend maybe a week more or a couple days more for it to go ahead and establish itself and they did. 

The funny thing of the story was that even the doctors were surprised that this never happened before. They never found out a kidney rejecting medication. They found out kidney rejecting from the body, but, now, it was just because of the well-monitored and they were taking care of me, they found this out.

Host: So, you made a big contribution to science, as well.

Jose: I hope so. I believe that I did because, you know, if it wasn’t for that, they were surprised. I mean I was like, “Really, you guys never seen this before?”

Host: So, now, you must feel very, very connected.

Xiomara: Yes. I want to say something to you Rolf. I am very bad person to take medication. After surgery, I don’t take my medication for the surgery. I don’t even finish because that made me sick. I know now that he has my kidney, my kidney said maybe, “Hey, this is not part of the plan. For 52 years I got a person that don’t take medication.” The only condition I have is asthma. I don’t have nothing else. No blood pressure, no high pressure, no nothing and maybe my kidney said, “Why they going to give me all this medication.” I don’t know. I just want to think like that like I’m thinking what my kidney was.

Host: So, the kidney “moved house”, and had to get used to the new environment, new rules.

Xiomara: Exactly.

Jose: That’s right.

Xiomara: Exactly.

Rolf: Xiomara, you mentioned the surgery hasn’t made your life more complicated in any way, that you feel just the same as before. Is that right?

Xiomara: Yes. Nothing really changed in my life but let me correct that. It changed for better. More conscious to be healthier, more conscious to be active with my family because this is the way they have to be. I’m showing my kids and Jose because he’s the one, he got energy. He’ walking to a week like five times a week he’s walking three miles. I am walking with him. He’s [24:40 inaudible], he’s doing exercise. I had to be on his same level to [24:45 inaudible]. Nothing changed. For better, yes, for bad, nothing.

Host: So, you’ve really embraced the idea of self-care? 

Xiomara: Yes. Rolf, let me tell you. I just turned 53 last Friday, July 9th. I feel like I have 32, 30 years old. My energy is nothing compared for a few years ago, when I was just like, “No, well, no. It’s not my thing. I’m not going to do nothing. I’m going to just watch some TV.” Now, I’m proactive. Every time I can do something with my family, I do. It’s now much better. 53, but feel like 30. My kidney is okay, just one kidney. I believe I can live for long, long, long time, if I take care of myself. Just to be conscious what we’re eating, what we do, that we’re proactive.

Host: So, the whole experience showed you how life is so precious.

Xiomara: Yes, yes.

Jose: Absolutely. It’s given me a second opportunity of taking a shot at life. I told her, now I have two birthdays. My original birthday, which is December 25th, Christmas and January 27th, that’s when the transplant was done and I give that my second birthday.

Host: Now, our last guest on the podcast, she calls it her “kidneyversary”. 

Jose: Kidneyversary that sounds nice.

Host: So, last couple of questions and thank you so much for all that you shared with us today. Jose, what are a couple of things you wish you’d known much sooner, much sooner in this whole journey?

Jose: If I would have known about the UNC Latino Kidney Program earlier, no doubt, I would have went there first when I found out about transplant.

Xiomara: Yes.

Jose: It took five and a half years and it took a lot of work and research and my wife is a donor and she was pretty much doing all the legwork with the research in reference to trying to find something else, even behind my back because, at one point, Rolf, to be honest, I was giving up. Sometimes, I just saw some of my other dialysis patients, they were dying. I said, “What, my next, what’s in it for me?” But I think God had a plan and God went ahead and made us and guided us to the things that happen and if it wasn’t for all that, you know, I probably would have been in a worse-case scenario, right now.

Host: And yet, you found a way to unlock that door.

Jose: Absolutely. Yes, pretty much my wife went ahead and she knocked on that door and like I said this is a lifechanging event and I’m thankful for her and thankful for God and things worked out, an all the wonderful people at UNC-Chapel Hill. 

Xiomara: Yes, wonderful, all the staff. Every nurse on the first floor, even the people, the housekeepers.

Jose: Even them. 

Xiomara: Everybody.

Jose: Every single person in there, they were rooting for us.

Xiomara: Yes, yes, yes, every single person there.

Host: It’s a wonderful story. Xiomara, I’m going to let you have the last word. Is there anything else you’d like our listeners to know about as we close our talk today?

Xiomara: From the bottom of my heart I wish people to listen to this broadcast, educate themselves. If you have somebody with this condition look up the way they do, even with my limitation in English, I read, I translate every word because I want to see my husband, for many years with me, I want to keep him here with me, and be more healthy. No, thinking to be a living donor is going to hurt your life. No, it’s not. If I do, everybody can do. 

I always tell people that today is my husband, tomorrow is somebody that you love, a neighbour, a son, a nephew, whatever. Do the best you can, educate yourself. Thank you, again, for this opportunity because me and Jose, we want to spread the word how UNC Latino Transplant Center, they are wonderful. They are wonderful. Everybody, thank you, again, and thank you, Rolf, for giving to me and Jose this opportunity. Today, I’ve got my husband by my side and I know God put these people in our path. Yes, thank you, again.

Host: Thank you both so much and thank you for making us all cry a little bit today and making us laugh a little bit today. Daniela, it must be wonderful for you to hear this kind of feedback about the clinic.

Daniela: It makes it all worth it and it makes us so happy to make a difference and to be able to help and to know we say, “We help patients help themselves,” and it is so good to hear this story and also, know the people. There are people with beautiful stories and it is a pleasure to get to know those stories and to get to know the people and to be able to be part of this.

Xiomara: Thank you so much, again, thank you, people.

Host: Thank you, it has been wonderful.

Xiomara: Yes, I like to speak about this miracle in or life.

Host: We are so grateful to Jose and Xiomara Flores for sharing their inspirational story and thank you, Daniella for joining us, too. Please make sure you catch part 2 of our visit to the UNC Transplant Latino Kidney Clinic in the next episode, when we’ll talk more with transplant social worker, Daniela Matz and clinic founder, Dr. Pablo Serrano. Thank you to our listeners for joining us today. If you enjoyed the podcast, please consider sharing it with others and subscribing on any of the leading podcast platforms and smart speakers. 

We also thank the participants and advisors who helped create this podcast and our underwriter, Veloxis Pharmaceuticals. Join us again soon for more kidney transplant conversations. Until next time, take care and be well.

 Copyright: Project Advocacy 2021

(End of recording)

 

Download this episode AUDIO

Episode 1: Impact of Pandemic, & Meeting People Where They Are 

Welcome to Kidney Transplant Conversations. The COVID-19 pandemic has everyone asking a lot of questions, especially transplant recipients, and those waiting for a transplant. In this episode we discuss the impact of the pandemic, talk about masks and vaccines, and how the pandemic is impacting people with immunosuppression. To explore these subjects, we welcome two guests to the podcast. Firstly, living donor recipient Risa Simon, who will share insights from the transplant patient’s point of view, and then Daryle Blackstock, PA-C, who will talk about the importance of meeting people where they are. 

Links to resources mentioned in this episode:

TransplantFirst Academy

ASTS Patient Resources 

AST Patient Resources 

NKF Patient Resources 

AAKP Patient Resources

Kinsey's Kidney Adventure by Nadine Morsi

Medical Apartheid by Harriet Washington

 

Transcript

Kidney Transplant Conversations, Podcast series

Episode 1: Impact of Pandemic, & Meeting People Where They Are

Download transcript PDF

The COVID-19 pandemic has everyone asking a lot of questions, especially transplant recipients, and those waiting for a transplant. In this episode we discuss the impact of the pandemic, talk about masks and vaccines, and how the pandemic is impacting people with immunosuppression. To explore these subjects, we welcome two guests to the podcast. Firstly, living donor recipient Risa Simon, who will share insights from the transplant patient’s point of view, and then Daryle Blackstock, PA-C, who will talk about the importance of meeting people where they are. 

Host:                   Hello, welcome and thank you for joining us for the first episode of our Kidney Transplant Conversations podcast. I'm Rolf Taylor, your host, and series producer, and having been involved with health advocacy for many years, I'm honored and excited to be joining you on this journey of discovery. We'll travel across the world of kidney transplantation, through conversations with all kinds of healthcare professionals, and most importantly of all, with all kinds of people who experience kidney conditions. This podcast is a collaboration between several kidney patient organizations, professional organizations, and committed individuals, who together all share a passion for working to make kidney transplantation more accessible, more equitable, and as successful as possible in the long term.

Throughout this podcast, we're going to be exploring stories and perspectives that reflect the amazing diversity across this country so whoever and wherever you are, if kidney transplantation is important to you, then we hope you'll find conversations that are meaningful and relevant inside this space. Each new episode will feature interviews with patients, caregivers, advocates, donors, healthcare providers, and community leaders. We'll explore all the stages of the kidney transplant journey and invite our guests to share their experiences and insights as well. We'll also look at things like health disparities and identify where and why some groups don't do as well when compared to others and discuss what we can do to close the gap.

Our discussions will be purposefully focused on inclusion, diversity, equity, and access. Also known by the acronym IDEA, which are all subjects central to the purpose of this podcast. So, we hope you will subscribe and let kidney transplant conversations keep you connected, informed, and inspired with a constant flow of new thoughts and ideas. And so, for today, the COVID-19 pandemic has everyone asking a lot of questions, especially transplant recipients and those waiting for a transplant. So, today we'll discuss the impact of the pandemic, talk about masks and vaccines, and how the pandemic is impacting people with immunosuppression. To explore these subjects, we'll welcome two guests to the podcast. Firstly, living donor recipient, Risa Simon, who share insights from the transplant patient's point of view, and then Daryle Blackstock, PAC, who will talk about the importance of meeting people where they are.

All views and opinions expressed in this podcast reflect those of the participants.

So, our first guest on today's podcast is a kidney transplant patient, an author, an advocate, a mentor to other kidney patients in association with several organizations, and CEO and founder of Transplant First Academy. She's passionate about sharing her own experiences as someone who received a new kidney from a living donor. And she has helped many people follow that same path. Welcome Risa Simon.

Risa Simon:         Thank you so much for having me on the podcast, it's truly an honor. And while I feel like I'm one of the lucky ones, believe me, it didn't start out that way and it doesn't start out easy for any kidney disease patient. Sadly, my father died in his early forties, struggling on dialysis. He was told in his early twenties, he had about 20 years to live. As a child I wasn't given that information. My brother ended up on dialysis after, in between, I should say two transplants. And that's why I say I feel like I'm one of the lucky ones and the path that I discovered really needs to be elevated to a position where other patients who deserve to live a better and longer life can tap into the resources that can change their life, if they're willing. Make no mistake, this does take work and a commitment, but all you have to do is talk to somebody on the other side of this equation that said, “Hey, look at the life I'm living and possibly you could live this life too, but here's what you need to do,” and a lot of it is patient engagement.

Host:                   Well, thanks for sharing that I'm sorry to hear that your father passed away so young. How long is it since your transplant now?

Risa Simon:         It's an 11-year kidneyversary coming up in about six days, Rolf. It'll be June 8th. On June 8th, 2010, is when I received that magical gift that truly, changed my life.

Host:                   How, are you feeling now?

Risa Simon:         You know, every day is filled with gratitude for the one day that gift was not only offered, but of course, you know, you take it full steam ahead from where that particular donor was approved. I had a total of six individuals come forward, the sixth one was the magic one. And that's on June 8th, that's when I received MAK. I have named my kidney from day one to 11 years out MAK stands for, it's an acronym Melissa's Amazing Kidney and boy, has it been amazing. So, yes, I'm feeling well, but once again, I need to say that it takes work. It's a daily commitment, there are immunosuppressive drugs that we will be on for the rest of our life or the rest of our functioning kidneys life, and there are certain disciplines that we need to follow if we want our kidney to last as long as possible and function as well as it can possibly function.

Host:                   Well, you look wonderful, you sound great, you're full of energy and you've been so helpful as we've been planning this podcast and, you know, thinking about the things that we're going to talk about. So, appreciate you sharing your story and joining us. I want to switch topics a little bit if I may because I think what's front of mind for everybody right now is the COVID-19 pandemic. And especially its impact on people who are taking immunosuppressants to protect their transplants. So, could you share a little bit about, you know, what is your experience been in terms of thinking about vaccination, thinking about taking a medication, how has that felt in this time?

Risa Simon:         Such great questions! When the vaccines finally became available in our area, even if I was ready to jump forward and I'll tell you what a little bit of hesitancy I had, it was very hard to get in. I was, you know, dialling for an injection. I was just dialing here and dialing there and getting online. And so, there was that barrier. Inside, full confession, I was thinking, do we know enough about our immunosuppressed population? And that little voice in my head said, “I don't think we know enough.” And when we, as transplant recipients, hear anything to do with antibody, that word before transplant and after transplant is somewhat alarming. We don't want to develop the donor-derived antibodies, which could cause rejection and I have known and met a number of folks on dialysis for years, hoping to get a transplant, but they're highly sensitive because they have a lot of antibodies.

So, that was the other thing I was like, “Oh, what about that?” You know, yes, I finally did, yay got vaccinated. And I was curious, you know, am I going to show some immunity and am I going to respond? But I did test post-vaccine first dose and second dose, and after the first dose zero detection of any reaction to the spike protein. And after the second one, I expected, because the scale starts at like 0.08 and I was below that on the first one. The second one, I actually had a pretty high number. I would've been happy with a full one digit, and I ended up in three digits. The problem is though, since we don't know that much, communicating with my transplant nephrologist I said, “Hey, you know, what do you make of this? We didn't think that I would have any protection.” He said, “Well, I think it's a good sign that you have a high number. We just don't know enough, yet.

And you're reminding me, Rolf, as far as what we're hearing out there in the field, there's a number of articles you've probably seen a few of them, but a couple of these studies that have been run on the MRNA, one out of New York-Presbyterian, another one out of Columbia that revealed 75% of those who have been vaccinated with the MRNA did not respond. And then, there's another study out of Johns Hopkins that only 54% did respond. So, it depends on what study you're looking at. You know, again, I call myself one of the lucky ones. I'm not quite sure why it happened, but I still have to be careful. I am not letting my guard down.

Host:                   It's an evolving situation and I'm sure that there is a lot of research starting up, but in the midst of a pandemic, everything feels like it comes too late, right? It's like we want clarity, and we don't have clarity. We have lots of mixed messages, but I think it's really helpful that you shared that experience. And hopefully, as time goes by, we'll have a better picture of what's really going on.

Risa Simon:         Exactly. I think some of us just have to leap into that void, which I ended up doing because I have to protect MAK. I mean, somebody did this amazing sacrifice for me, and then I've got to do whatever I can.

Host:                   I think the other thing that's been happening is that right now, you know, this is the beginning of June and people declaring victory on the pandemic. And, of course, it's a rush to remove mask mandates. Everybody wants to get back to normal, which is understandable, but in light of how many people are on immunosuppressant medication or maybe receiving other treatments that are affecting their immune system, you know, a lot of cancer patients, then it seems a little insensitive that everybody's so preoccupied with I want to take off my mask and I want to have my reward for taking the vaccine, but at the same time, it's a little insensitive to people who are vulnerable.

Risa Simon:         Absolutely, you know, it's funny when we turn the clock back and everyone was wearing masks, as an immunosuppressed individual who wore masks quite often, I was like, “Hey, welcome to my world.” I didn't look so strange anymore. Everybody pretty much looked the same. And now, based on what you've just shared because of the liberation of masks and the insensitivity to it, you know, we don't expect everybody to be thinking about us as a community, as a society, as you know, just doing the right thing for, not just yourself, maybe you don't care about yourself, but how about, you know, your family, your friends, and strangers.

We as transplant recipients that have received a kidney from a living donor, we're kind of spoiled because that is to me and I think many of my compadres that have gone through this experience that is like the ultimate, ultimate, heroic, altruistic thing, the highest achievement anybody could achieve in the level of human kindness. So, we've experienced that, we've witnessed that, and it's such a small sacrifice If you even want to call it a sacrifice, it's really an inconvenience, but when the CDC says… So, we just have to continue to protect ourselves again, my own physicians at the transplant center saying, you know, you basically need to act as if you were still in that period of time where you needed to follow all the protocols because you're immunosuppressed and nothing's a hundred percent.

Host:                   Don't feel pressure to take off your mask because people are expecting it.

Risa Simon:         Exactly.

Host:                   You're not making a political statement by keeping a mask on its necessary self-protection.

Risa Simon:         Absolutely. No regrets, you know, there are no regrets. There's silliness when we just, you know, throw caution to the wind, but each to his own. We can't make people do that, but it would be nice, as the days go on, that some thoughts occur. Maybe it's a grandmother or grandfather, a child, you know, just maybe just some thoughts occur to these individuals that are thinking, you know, it really isn't that much for me to protect myself so that I can help protect others.

Host:                   And what about people who are actually waiting for a transplant right now?

Risa Simon:         You know, it's interesting, there's a number of thoughts that are running through my mind on that question. The highlight, the silver lining in the pandemic is that we all of a sudden have access to telemedicine and I've been taking full advantage of that Rolf, you know, there's no ifs and buts about it as soon as somebody is scheduling an appointment, I try, unless it's, they've got to draw blood or take an image, I'm having a tele-visit And so that is really a positive, as far as getting a transplant, getting tested for transplant that as you said, has been slowed down, they're back up again, but they're still playing catch up right now, right?

So, and then there's the fear. A number of my mentees were going in to be evaluated or having donors evaluated, hoping they could get their transplant soon, and then the pandemic hits, and then there's the shutoff, no living donors are being evaluated, right now, and the whole thought process, which goes through my mind as well, would have gone through my mind. Eleven years ago, I'd be going okay, I'm already nervous in a hospital, I'm like, “Oh my gosh, you know, is it safe?” And for donors that want to help truly through their heart, want to help someone live a better and longer life, we can't put them at greater risk. So yeah, there were a lot of legs to that stool if you will.

Host:                   So, we're living in a time of greater complexity for everything, but particularly when it comes to healthcare. And so, people have a lot of questions. Where would you point people who were looking to kind of answer these difficult questions, where are the best information resources for this kind of thing?

Risa Simon:         The way that I was able to get across the finish line and receive a transplant before I required dialysis all started when I attended a patient conference and I was attending conferences, not just for patients, for physicians too because I'm just curious. So, I’m a sponge. I love to learn.

And I think number one, patients need to reach out, access as much content as they can from an educational standpoint, they're probably not going to find a lot of it in their outside nephrology office, they may have some, but if we're talking vaccinations, they're probably going to be looking to some of these patient organizations, there's a handful of them, you know, three big ones for sure that have webinars. It seems like every other week you could get on a webinar with updates. The key here is, even as a mentor, you can learn a lot from your mentor as a mentee, you can learn a lot talking to your mentor, but we don't give medical advice.

So, we can only share our own experience and so making a point to bring your voice and your questions to the table with your own physicians and especially your transplant center, my outside nephrologist to me doesn't have the experience that the transplant center has because they're more up to speed on immunosuppressed patients. So, getting together with those organizations and really reaching out and doing your own research, make it a point to sign up for as many courses as you can.

Host:                   I guess what you're saying is that regardless of what stage you're at, whether your pre-transplant or post-transplant, it's your transplant center that's going to have the answers to your questions. So, engaging there is key, and then doing the research.

Risa Simon:         One other point here that we should underscore is if the individuals feel that it's not a good fit, that they're not being listened to, their questions aren't being answered, there's not a portal, and the portal can be extremely valuable I use that all the time, asking those questions. The answer may be, we don't know enough yet. I get that often, but still, at least, I'm asking, and I'm engaged. And I feel a little more confident knowing that, well, my doctor is going to let me know when they do know more. But yeah, patients really need to spread their wings and make sure that they are connected in any way that they can and find other sources. This isn't a good connect. Let's find out who might be a better connect, might be a better provider for me.

Host:                   Just in closing could you just share one thing that you wish you had known when you were first diagnosed when you were in that early stage?

Risa Simon:         Well, there's probably a number of things, but the one thing that was the most impactful, you may know that there's an initiative that's been around for years. It's called Fistula First. Had I known transplant could come first, most patients think dialysis has to come first, had I known that earlier my path would have been that much easier. Yeah, I was able to pull this off, but I could have pulled it off a lot easier, had I known the route and had I known the opportunity, and thank goodness I got it in time, and I activated it. Yeah, so truly if the patient is given that opportunity to seek information outside the sacred walls of that exam room, I didn't know I could do that either so, it all is connected and it all started at a patient conference.

Host:                   I think what I'm hearing you saying is you can't start pushing for a transplant too early.

Risa Simon:         No, it's never too early. We're really the driving force. We have to get the information, you know, that old saying information is power. It couldn't be any truer for me and everyone, because sometimes you have to be hit full-on in the face with perhaps your scariest fear, but fear can be a motivator. It was for me, and it is for many. And if we can embrace that fear and take it by the reins and go, okay, what can I do to change my trajectory? That's really what it's all about.

Host:                   Risa, thank you so much. It's great to see you, it's great to hear your story and it's also great to witness how you're taking everything, you know, and sharing it with so many people including us. So, thank you so much and we hope to see you again very soon.

Risa Simon:         Thank you so much, truly an honor, to be on your show.

Next Interview with Physician Associate Daryle Blackstock, PAC

Host:                   Okay, so now it's my pleasure to welcome Daryle Blackstock, PAC. He is the director of clinical transplant operations transplant services at New York-Presbyterian hospital, Columbia University, Irvine medical centre, and New York Presbyterian Weill Cornell Medical Center. So, that is two campuses that together represent one of the largest transplant programs in the United States. But somehow Daryle has found some time to be with us today. Welcome, Daryle Blackstock to kidney transplant conversations.

PA Blackstock:   Thank you so much, Rolf, but it's really a pleasure and when you say somehow, I've found the time, listen, this is built into my schedule, and I absolutely am honoured to be here, and I am so grateful that we have this time together. And to just reach out to your listeners.

Host:                   Really appreciate your enthusiasm for the whole project. And today we're going to talk about some COVID-19 related things, which are kind of front of mind at the moment, particularly navigating the ever-changing mask guidances, I think it's important we talk about that. We're also going to have a discussion about meeting people where they are. And I think that's all about being intentional about putting the patient at the centre of care and I'm excited to hear your thoughts on that. I know it's something that you're passionate about. But before we move on to those topics, Daryle, could you tell us a little bit about your role as a physician assistant director of clinical transplant operations and also your focus in your career on transplant patients?

PA Blackstock:   Absolutely. So, you know, it's funny. I didn't choose transplant, transplant chose me I started off my career in wow, ‘97. I graduated from PA school and started off in the operating room as a surgical PA. Really and truly loved being in the operating room. I transitioned to Westchester Medical Center working trauma, critical care, and it just happened there was an overnight position and it was the largest transplant program, kidney transplant program in the region. And I had the pleasure of meeting Dr. Khalid Butt, phenomenal world-renowned transplant, kidney transplant, surgeon, God rest his soul. And he just taught me so much about transplant and I got bit by the bug. You know, these patients are truly, truly unique. We get to, as a provider, we're often taught, you know, you have to maintain your distance in order to be objective.

And with the transplant, you have to get to know not just the patient, but their family and their support system, because that's when you, that's where the magic happens. That's where you get that additional information that you just really can't get from asking questions. You know, how are you, looking at vitals, looking at labs, you really get to know the patient. And that's when I fell in love with the field of transplant because you really get to know the patient and it's okay to cross that boundary.

And from there, I went on to be a transplant coordinator and eventually got back into the world of being an inpatient transplant PA working in lung transplant, working with a great team of other practitioner's providers, and took on some leadership in the world of transplant PA and then ultimately became a director of clinical transplant operations here at NYP. And that really allows me to just take a look at how we're operating clinically. What can we do better? What are we doing well that we should continue? And it's really, it's put all of my experience as being a PA and being a transplant coordinator to use to keep doing what we're doing and doing it well.

Host:                   It's really interesting that you mentioned about kind of to know the patient in a way where maybe in other disciplines, there's more of a boundary and I'm wondering and I think we'll talk about this a little bit later when we talk about you know, patient-centered care and meeting patients where they are, whether that approach within kidney transplantation should actually be a model for other disciplines.

 

PA Blackstock:   Absolutely, a thousand percent, because you know, when we think about it, you know, what we're taught as providers is that you listen to the patient. The patient really is going to tell you what is wrong with them, what they're going through and that makes up the majority of your diagnosis. They're going to guide how you treat them and it really is a partnership. And so, absolutely we should have that bond with the patient. You know, if you think about the old-time medicine where you had that physician in the town, and they did the bartering, that physician was a part of the town and a part of everyone's family.

And that's how you truly make the diagnosis and that's where that, again, that magic that's where it happens. And think about our own personal experiences with our own providers. Again, I feel comfortable when I walk into my provider saying, “Hey, how is this? How's your family?” Something about me that's personal because then that builds that trust and, that's where again we're sharing information. I'm letting my provider know what's going on with me and getting the best outcome possible. So, absolutely it should be a model that everyone follows.

Host:                   Reminds me of a conversation I once had with a doctor who was on the verge of retirement. And he'd been practicing, I think he'd been practicing since the 1930s as a doctor. And he said to me, you know back in my time, he said we only had three things. We had penicillin, we had aspirin and we had the tone of our voice. That was it. That's how we did it. And he used to bemoan that, you know, kind of the art of the bedside manner had kind of gone away because medicine has become so very technical.

 PA Blackstock:   And, you know, medicine, it's a science as well as an art, right? And, you know, any new person coming onto the team and whatever discipline, I always remind them that, remember, this is very much science yes until you have your facts that you have to look at and you treat, but then there's that art piece of this. And, you know, I've had the pleasure of hearing Dr. John Amman talk about this. You know, when he gives his lectures on the history of transplant, he brings up this beautiful artwork and he's giving a great message. But part of it is don't forget the beauty of the art in what we do. And the only way that we can truly create a work of art, and you know might be a little abstract. I know people are thinking art in healthcare, wait a minute, you know, I'm not thinking of blood and drawing pictures, but it really is about having the best possible outcome. And that can only be done in unison with the patients and not just patients, but their support system. It's extremely, extremely important.

Host:                   So, this time these days in healthcare, you know, no discussion is complete without mentioning the COVID-19 context. And this is particularly true for transplantation, I think. When we think about the different situation that we have for people taking immunosuppressant medication, and it's not a small group when you look at the numbers, you know, it's 35,000 people every year receiving a new transplant in the United States. So, I'm curious to learn about what kinds of concerns your patients are raising with you when it comes to the pandemic when it comes to COVID-19.

PA Blackstock:   You know, Rolf, that's an excellent question. And you know, I also want to acknowledge those are the patients that are getting transplanted. You know, on the post-transplant side, let's just acknowledge those patients that we also take care of pre-transplant, you know, and there are some disciplines, for instance, liver and lung and different transplants such that different protocols, if you will, but they actually manage those patients. They become the primary care provider for those patients, depending on how sick they are. So, you know, you can, in addition to that 35,000, maybe we can even quadruple that number when you think about the quote/unquote transplant umbrella. So, you know, what are we concerned about? It's access to healthcare, access to the COVID-19 vaccine. Equally important is access to the correct information. You know, I think Rolf you and your listeners can all appreciate the wonderful world of Google. You know, we can go ahead and Google anything, but, you know, keep in mind that the information that streams into Google may not be a hundred percent accurate or just might be information overload. So, that's one of the main things I'll tell you that we heard about, it's one access to the vaccine and then two access to accurate information as it pertains to the transplant patient. And so, through the many different transplant societies and, you know, just a joint effort, they've been working, or we've been working to put out information specific to the transplant patient. I would say that information and the right information was the major concern of patients, both on the pre and the post side.

Host:                   So, where would you recommend people go to access information that they can trust?

PA Blackstock:   A wonderful question. So, the American Society for Transplant Surgeons, ASTS, they have wonderful information. American Society for Transplantation, AST, has phenomenal information. You have the Kidney Foundation, the National Kidney Foundation, excellent information there, as well. The nephrology associations, wonderful information, but specifically for the transplant patient, I would recommend ASTS they have wonderful, wonderful information.

Host:                   Well, you know, what we can do is we can add links to the description of the podcast on our website. So, anyone who's listening, if you come back to our website, then you'll be able to access the resources that we're talking about in this conversation. What about things like vaccine hesitancy and, you know, I’ve got to say, I live in Baltimore. I follow the Baltimore Department of Health on Facebook, and they've had a great campaign. They've had a really good strong campaign, a very inclusive campaign. But I'm amazed by the number of people who are piling it in the comments section every time they post with disinformation.

PA Blackstock:   You know, we were just talking about this, what is a major concern of our transplant patients, both pre and post, and it's really, you know, access to the right information. And, you know, I like to think of hesitancy, and I've been walking away from the term hesitancy, right? And I'm just saying, you know what, its deliberation. Our patients need information to make up their right minds. I'm not calling it hesitancy in my head and I'm approaching it as, you know what, you deserve the right information, because why wouldn't you deliberate on this major, you know, issue that's happening that's, COVID-19?

I'd like to say, “Well, what's COVID?” We can't say that, right. So, yes, you know, folks who have been marginalized, meaning, you know, who have a distrust in the healthcare system, they have every right to deliberate, right, just a little bit longer because they don't trust the information coming from the academic institutions. They don't trust information coming from the hospitals. And, you know, there's so much right and wrong information coming at you through sources like Google, and it's, you know, what do I do? So, you have folks who are confused, or people just, I just don't believe this. And they know what’s safe for them is to do what they can, they can control what’s in their world, which is, you know, not get the vaccine, ignore what's out there and just say, “I'm going to stay away from folks.” And so, that lends itself to that hesitancy that you see that deliberation.

And so, how do we combat that? You know, we just have to say, listen, like the Baltimore Department of Health, what they're doing is this is the right information. Go to trusted sources, go to the academic centers, you know, go to your physician, your NP, or PA, your nurses, go to your providers and say, where can I get accurate information that you trust? Or, you know, what I would even encourage your listeners to do is ask your provider, well, did you take the vaccine? And why did you take the vaccine? And pose those questions that you have because believe me, we all have those same questions for ourselves. Because I was sitting there and getting my shot, my two shots, I did some research I had to think about it I went through all of the anxiety. Ultimately, I had all of the right information. I made my decision to take the shot. And that's where I work now. I work on the speaker's bureau here at the hospital to just deliver the right information, to help people make their minds up about the vaccine.

Host:                   It sounds like the key to that is the opportunity to have a conversation where if you're feeling cautious and there are things that are giving you concern, you can voice those things. You can have them acknowledged and you can talk through those. That’s key.

PA Blackstock:   And you know, we talked about this. This is something that I didn't come up with this term but meeting the patient where they are. I love that term and I've adopted that. This is exactly, you know what I mean when I talk about that. Where are you in your point of deliberating? Where are you in this point of making a decision that's best for you, your family, your loved ones, your friends? Let's talk, where are you? What are your concerns? What have you been hearing? You know, and something that I've heard quite a bit we've talked about nanotechnology and people hear that and they're thinking, nanorobots, wait, what are we talking about? You're injecting these little technologically advanced creatures in my arm, and now I'm going to become a 5G antenna? Are you're going to be able to track me? You know, and I take that seriously I said, well, let's talk about that. Let's talk about what it means to use nanotechnology when delivering the vaccine. Yes, you're right. We are talking about these small particles to deliver information. Are they robots? No, but that's what I mean by let's have that real conversation. Let's meet you where you are. And so that we can start to pull apart and get you the right information to things that concern you. I think that's only fair and as healthcare providers, we owe that to our patients as a physician assistant. Well, we've now changed from physician assistant to physician associate that's the hottest thing in the PA world.

Host:                   I was going to ask you about that because that's new news, isn't it?

PA Blackstock:   It is. It's breaking news.

Host:                   Is it official?

PA Blackstock:   Well, are the AAPAs, the American Academy of Physician Assistants, or should it be Physician Associates, now voted the house of delegates voted last week to officially change the name from physician assistant to physician associates. So, what's interesting, Rolf, is that in the past we were actually, you know, that term physician associate was out there and in England as the UK is, you know, they're known as physician associates. So, it's a new thing as far as our association goes now, it's just time to change the laws state by state.

 Host:                  You’re going to have to reprint everything!

 PA Blackstock:   Well, you know, we’ll stick with PA.

Host:                   Yes. So, I love what you're saying about meeting people where they are in terms of mindset, where are people sitting in terms of deliberation, in that process of deliberation, and what I've also seen with some really great initiatives that are focused on meeting people where they are to get vaccinated is the physical location.

PA Blackstock:   Yes.

Host:                   So, taking vaccination to individuals, to churches, to community centers, in addition to the mass vaccination sites that we all know about that are in these, you know, like in Baltimore here, it's in the convention center. It's thousands of people. But not everybody can go and stand in line for an hour before they get actually to see someone. And then, the other area for meeting people where they are is also maybe recognizing resource availability.

PA Blackstock:   That's right. You know, we talk about access, and you know, this is where we talk about social determinants of health. I think we've heard that term over and over. And what does that mean healthcare disparities? We've known since the 1970s that black and brown communities, not just black and brown, but marginalized communities and groups in lower socioeconomic groupings here, crossing that transcends race and ethnic boundaries that there's just been a lack of access to healthcare and to good health care. And why is that? We know that policies that became laws excluded access for certain groups. And that's where I'm talking about the black, brown and marginalized and lower socioeconomic grouping. And so, what did COVID teach us? COVID has no respect for boundaries, it has no respect for race, for social class, for economic class. I mean, it has no respect for that meaning that it's going to hit everyone equally and therefore, we have to respond, and we have to address, we have to attack, and we have to fight back this COVID-19 on all levels. And so, that's why you know, those, you know, your listeners, what I want to let you know is that we're not trying to just get this vaccine out to you just because we're because we want to inoculate you with some kind of antenna or make you a 5G device, but we have to fight this in every group, because guess what, if we ignore a certain grouping of this population, that virus is going to sit, it's going to become stronger, it's going to form different variances and guess what? That virus is going to go back into the general population and undo all of the work that we did.

 Host:                  Right.

PA Blackstock:   So, we have to address this as a community. It takes a village and it's taught us that only as a village, only as a big global community, will we be able to address this and get this under control? So, that's why it's about time that we see some of these social determinants of health. Some of these disparities that we knew existed, this is why we're working to correct it. And if we can work to correct this with COVID-19, that means we can work to correct this with other things such as hypertension, diabetes, you know, because we have to work as a community because we are all interconnected. And that's what COVID has shown us.

Host:                   So, it's showing us that there was already a pandemic in terms of diabetes and obesity, and other conditions. And we have to tackle those conditions in the same way that we've tackled the pandemic.

PA Blackstock:   Absolutely, absolutely and, you know, we can just look at, you said it the pandemic and endemic. I mean, we can go into gun violence. We can look at, you know, it's just so much more that we can look at, and this, if we get this right, there is no reason why we can't translate what we've learned here with COVID-19, into all aspects of life. You know, we need each other to survive that's pretty much what this is teaching us.

Host:                   So, just a couple of final questions as we're coming to the end of our time. First of all, health disparities within kidney transplantation, what are a couple of key disparities that you are particularly concerned about that we can maybe return to have a deeper discussion in the future?

 

PA Blackstock:   Wow, phenomenal. Right? That's a phenomenal question. So, access to transplant centers, you know. We, the government has now required that anyone who receives dialysis should have some kind of referral to a transplant center, regardless of where you're located. You know, we saw the disparities where you know, patients who sought care at specific dialysis centers were getting referred to transplant centers at a higher rate than those black, brown and in marginalized communities. That's a huge, huge problem and while the government did mandate it and we can put things into play, we need to maintain a certain level of quality, and we need to make sure that we're not just doing this to check off a box, but that we're doing this to make some kind of a long sustaining you know, initiative and it's a good quality initiative that these folks are going to get educated and they're going to be seen at a transplant center and it's not just, oh, I made the referral. Oh, they didn't go. We need to look into why they're having difficulties going. Where is the closest transplant center to them? And what does access, what does transport look like to get that patient from Point A to the transplant center so they can be evaluated and back? If there's a problem with getting that patient there, then the transplant center needs to look at setting up a location in the community to serve those at greatest risk. And we know it exists, we just need to address it. So, access, access, access, it's huge. You know, we can't help them if they don't have access. And so, that's an area that we need to definitely talk a little bit more about, and that's something we can talk about in future episodes.

Host:                   And then, finally, what are some words of encouragement, or maybe some resources that you would particularly like to highlight to our listeners?

PA Blackstock:   Thank you for that. So, there's a book written by Nadine Morsi, and I know you will post that link for us thank you. It's “Kinsey’s Kidney Adventure.” It's a wonderful, wonderful book. She had a phenomenal experience with her transplant center, and you know, what she wanted to highlight, you know, some things that maybe parents who don't know the system, they may face some obstacles. She wrote a wonderful, I mean, it's a great book. It's great for the pediatric patient, as well as the parent or the advocate that's going through that. So, I think that's a phenomenal resource. Shout out to Nadine. I had a wonderful talk with her, and we'll be interacting with her some more.

The other book that I really think should be at the cornerstone, or should be a required reading for everyone to understand why is there this distrust in the medical system? The book is written by author Harriet Washington, a phenomenal author, she's written several books, but this book, in particular, is called, Medical Apartheid”. You know, most people, when you talk about what did the African American community goes through and why do they have the distrust? Most people talk about the Tuskegee Experiment and, you know, shame on us for labelling Tuskegee, which is a phenomenal institution, and most people think of Tuskegee as, “Oh, the Tuskegee syphilis experiments.” Tuskegee is much more than that, right? Similar to that in that vein, there's a lot more that went into the distrust that Black Americans have towards the medical system. And with that, we can talk about the same thing with folks who are in lower socioeconomic groupings. You know, we can talk about our Chinese Americans, our Latin X community as to why they have a distrust, but I think that one book really, it will open the floodgates for you to really understand why is it that our Black Americans have this issue.

Host:                   Speaking as a white person, who's come into this space and trying to understand terms like structural racism or systemic racism, I think these are the concepts that are difficult to grasp unless you do a little bit of work, and then you do the reading and you come to grips with just the immense scale of what's been going on for hundreds of years.

PA Blackstock:   Yes, that's actually a great point. And, you know, something that we are learning again, we're not in this by ourselves, you know, and that's why I love to have these conversations with everyone. And I've always been open regardless of your background because we need these alliances, we need this companionship, we need to speak up for each other, and again, the point that I've been making, we are a village, we're a global village, and that's the only way that we're really going to get to that next level as a group, as a village, we need each other.

Host:                   Daryle It's been a real pleasure. Thanks for joining us today and thanks for being the first healthcare provider to come onto the podcast. So, you're blazing that trail.

PA Blackstock:   I just can't believe the time flew by so fast. I could listen to your accent like all day. I don't know, I love talking to my family in England just because of this but thank you so much.

Host:                   My pleasure, absolutely and yeah, please come back and we'll continue the conversation in the future. Daryle Blackstock, many thanks.

 PA Blackstock:   Thank you so much. Take care, everyone.

Host:                   This concludes our first episode of Kidney Transplant Conversations. It's been a pleasure to have Risa Simon and PA Daryle Blackstock visit with us today and we hope you've enjoyed joining our discussions. Links to resources mentioned in the podcast can be found on our website. We thank the participants and advisors who helped create this podcast and our underwriter, Veloxis Pharmaceuticals. Join us again soon for more Kidney Transplant Conversations. Copyright, Project Advocacy, 2021.

(End of recording)

Podbean App

Play this podcast on Podbean App