Hello and welcome to the Gift-to-Like Podcast where we have conversations about organ tissue and eye donation. I'm Lori Steele. I'm Joey Boudreau. And I'm Sarah Boudreau.
And today we'll be talking about a medical milestone in HIV donation. We'll be hearing from the first living kidney donor HIV to HIV and her physician. Oh my goodness that and so much more here on the Gifted Life. Let's get to it.
Alright here on the Gifted Life we are talking about a medical milestone and we are so excited to introduce you to our guest Miss Nina Martinez. Hey Nina. Hey everyone. We are celebrating you, what you've done.
We want to talk about this but Joey talk about this medical milestone. What happened? It's a medical milestone in the donation world. It's a medical milestone in healthcare in general.
The fact that Miss Nina here is the first living HIV to HIV kidney transplant. Unbelievable. Yes. She is a living donor.
The first HIV to HIV kidney transplant with a living donor. You're 35 Nina and you just went out and said I want to make a difference. Which is what we talk about here on the podcast. One person making a difference.
You have gotten our attention. So talk about this want to do more and to help your world. I mean I think it's very common for a lot of living donors to embark on this journey of donation because they know somebody who needs a kidney. So I'm not unusual in that way.
My ask for a kidney came from a friend who didn't ask me specifically for a kidney. He just posted on Facebook that he was in kidney failure and needed a kidney. And this was actually an idea I had about donating because I knew that it was legal. You guys have had episodes about the hope act.
I knew it was legal for me to donate and I knew that I was just as healthy as a former neighbor of mine who donated a kidney. So she is the medical reporter for Fox 5 Atlanta and I saw what she went through because she shared her story with her viewers and I thought to myself, you know what? I bet I'm just as healthy as she is. And this was about three years ago actually June 9th is her kidney nursery.
So it was a number of years before my friend said that he had a need for a kidney. So I was just waiting for an opportunity to which to I guess manifest my donation decision. Because everybody was really excited about the hope act. But to me when I learned about it I was 30 years old and was not very excited about signing up to get my little heart on my identification.
I just was not exciting to me. But living donation that was a little bit more exciting because I get to stick around for that. I have so many questions. Alright so your friend, so you said you he was asking for a kidney.
So tell us how that all went. You weren't able to donate to him, right? Not eventually. So he had just posted on Facebook that you know he was a kidney failure and he needed a kidney.
And I remember this was around 4th of July weekend last year and I wasn't doing anything. And again this was something I had thought about doing for a number of years because I knew that it was legal. But when I asked local physicians about this possibility in 2015 here in Atlanta a lot of them said you know we don't think that it's going to happen. There's too many concerns about what happens to their main kidney and people living with HIV because the virus itself can cause kidney disease.
The medication used to treat HIV particular the older ones can cause kidney disease. Like we don't know we're not optimistic that this is going to happen. And then they said you know you could sign up for the Georgia registry and I was like woohoo. And so just again 4th of July weekend that's when I read my friends post.
And so knowing that I had wanted to do this had asked around, it actually was inspired by an episode of Grey's Anatomy season 10 episode 19. Grey's Anatomy fans does have the first HIV to HIV living donor kidney transplants recommended. They did actually a pretty good job. I know that there have been other episodes of Grey's Anatomy where maybe they shouldn't have passed the psychological evaluation.
But that particular Hope Transplant episode that was inspired is actually very good. So I googled and nothing to do. Googled, Salah that John Tockens was the first transplant center that proved to attend a living kidney donation. And so I got to go to them and said how do I get evaluated?
And that's kind of how that all started. Wow. And so as you found out which is something that quite so many others have found out before, the donation process isn't that simple. There are so many things that you've got to go through.
And then from a matching standpoint it's not just matching a size or a blood type. There's also other factors that go with that. So then what happened after that when you guys started through that process? I feel like I learned every lesson there was to learn about kind of the hurdles in living kidney donation through this process.
Myself and my original intended recipient were actually not a blood match. But John Hopkins and a number of other centers do specialize in incompatible kidney transplants where if the chances of getting a deceased donor organ are not that great and they don't have other options for compatible living donors in some circumstances they can make it so that a incompatible kidney transplant gives that person a chance at receiving an organ. And that was the plan with me and my original intended recipient. Unfortunately, he passed away before I could complete the evaluation.
He passed away the day after Thanksgiving. So instead of like most people, you know, okay, I've hit the end of the line. I'm deflated. You then continued on and altruistically donated and said, okay, you know, there's others that may need.
So tell me what went through your mind from that sample. What a way to honor your friend's goodness. Well, it's interesting because a lot of people kind of get to that part because that's what they've seen in the news articles. I just want to say that I actually tried two more times to direct the donation because I did want to know what happened to the kidney.
I did want to have a chance to know the recipient. However, it was adjusted by Johns Hopkins that, you know, to maximize the best transplant outcome and who might argue with them that I should let them pick somebody who is going to be a good match. And since this was the first, we might as well make it a compatible kidney transplant. And again, I had wanted to do this for a number of years.
So it didn't, it didn't take too much convincing, mostly because that was the only option I had left by. Well, and they seem to know what they're doing, Nina, right? Yes. I love it.
Now let's talk about if you could how you acquired HIV. So you're 35 now. When was the transplant? When did you donate?
The kidney in March of the year. March of 2019. All right. So take us back to when you acquired HIV.
Walk us through that. That was a very long time ago. I was a six week old infant when I received a blood transfusion to treat anemia of prematurity. And we actually did not know that because this preceded HIV testing, HIV testing wasn't available until 1985.
And then FDA did not mandate the screening of blood until 1987. And so I was just kind of before everything got standardized to what we know now about blood safety. I was just kind of, unfortunately, somebody who did acquire HIV. And I don't really think too much of it because again, just like organs and tissues, I needed that blood to survive.
So it did save my life. It did put me in an equi-an-an-orthodox trajectory in where I actually did not know I was living with HIV for eight years. So I wasn't diagnosed until age eight. And so when I say that Harvey Louisiana is the last place, I lived my assumed HIV negative life.
That is true. And shortly after I was living in New Jersey when I was diagnosed. And so we knew that being eight years old, something must have fallen through the cracks. And it turned out that the US military, because I come from a Navy family, knew for two years before I was diagnosed that my donor from 1983 had tested positive for HIV and failed to notify my family in a timely manner.
And so the way that I was diagnosed was that I was having surgery for my eyes in 1991. And the preoperative paperwork doesn't normally contain HIV testing for patients under the age of 15 at the hospital that I was tested, but somebody mixed up the paperwork. And I got the adult pre-op testing packet. And that's how I was tested.
Which is a great thing because otherwise there was nothing in childhood to suggest that I was sick. And I would have been like any other young person that says, you know, I look fine, HIV doesn't look like me. But in 1991, you know, and it was actually the year that I graduated high school. I remember that time very well because I think it was that year of the year after that magic came out and Magic Johnson, the basketball player came out and announced that he tested positive for HIV.
And at the time it was thought of as a death sentence. And then here you are 35 years later, donated your kidney and you are healthier than most Americans. My goodness. Well, we'll do the math.
It's 27 years. I might get it from Georgetown in mathematics. So I had to... You see.
I mean, you just sound so positive and upbeat. And then the story, I'm listening to this in my jaw drop to the floor. It's like you're meant to stand out. You're meant to lead folks.
And I think that's kind of what you set out to do to show the world folks living with HIV are healthy and active and awesome, huh? I mean, I think it's a product of where I live, which is, as you all know, in the Southern United States where attitudes and the survival for people living with HIV is not as great. So for me, this was just an opportunity to really challenge people's perceptions, particularly where I live. I think folks who live in New England or in the Pacific Northwest or in California, you know, they're not stuck on the 1980s version of HIV, but where I live, where you have lawmakers and press and things like that.
This was really an opportunity for me to not only honor my friends, ask for a kidney, but really get people up to speed on this is where we are with HIV, science, medicine, and organ transplantation. So Nina, you've mentioned that the Hope Act legalized transplantation for those living with HIV. How that may have changed your mindset. I mean, I'm sure it was incredibly liberating and empowering, but also frustrating that something like saving lives through organ donation was incriminating for those living with HIV.
Can you tell us a little bit about that? Sure. So I'm actually an advocate for something known as HIV criminalization reform, which is the criminalization of people living with HIV who know their HIV positive status and engage in behaviors that in the absence of the preventive measures we know we have today would convey a risk for HIV transmission. That's tied to organ transplantation in the sense of these laws that criminalize non-disclosure, the majority of them around that.
Some do criminalize exposure, very little of them criminalize transmission. Around the same time in 1988, that's when the amendment to the National Organ Transplantation Act also put a federal ban on the use of organs from donors diagnosed with HIV. So for me living here in Georgia, we do have a law that not only criminalizes non-disclosure, there's also another part of the law that will criminalize organ donation without disclosure of a known HIV positive status, which is very ridiculous in a sense because it's from 1988 and the last time I checked the calendar, it is 2019. And as you all know, when you sign up for the registry, it doesn't ask your HIV status.
You know, this doesn't collect in their database somebody's HIV status. And so for me, there has been a movement across the country to modernize these laws, even the US Department of Justice says these laws that criminalize non-disclosure of an HIV status where there is no intent to harm. There's like no likelihood of transmission because some of these laws, for example, Georgia, it's a felony for me to spit on a cop, even though we know spit does not transmit. So it's an automatic felony.
You get a minimum of five years in prison. It's out of line with what we know with science. It's out of line with what we know about proper criminal law. And so this, for me, this organ transplants represented a way finally for people, especially lawmakers to realize like I'm not somebody who's out here trying to bring death.
I literally gave somebody else life. And I would really appreciate it if my state did not treat me like this monster that this transplant has shown that I'm not. Wow. And you do have some pretty powerful champions in your corner, folks who have started to read your story, listen to the podcast that you've been on.
But we will talk to Dr. Christine Duran, one of your HIV physicians, these people with this medical milestone helping you to push your mission forward. What do you think about those people? I felt like a lot of the experience that I have both as a person living with HIV also as a public health professional, as someone who is a policy advocate and things like that, really prepared me to work with the team at Johns Hopkins.
And I was very fortunate that they treated me kind of like a member of the team. And we really worked together in terms of, you know, I see media as some people like it. I'm very much an introvert, but I know that it's educational to just go as what happens. So that was my intent with, you know, not only going through the evaluation and the surgery, but also, you know, that doing things like this podcast so that people know that it affects real people because that was something that I noticed about the first press conference that Johns Hopkins had that you didn't hear from the patients that had received those organs in 2016 from the first HIV positive deceased donor.
And I knew that it would be important for this milestone that you actually hear from the person who decided to do it. And then it would be like really difficult to discount that, you know, even as a person not living with HIV, to me that is the bigger message is that if somebody living with HIV can go ahead and donate a kidney, if you're not living with HIV and you're in fairly good health that you should be able to do it too. So that's my hope is that not only do we get more HIV positive donors, but it is a bit resource-intensive for those folks, but also people not living with HIV who may be having other medical medical conditions that they're not sure if that makes them qualified for donation. And you guys have said it before, don't let anything rule you out.
Let the Transplant Center work with you and determine if you're a candidate for donation. Now, wait a minute, Ma'am. Have you been listening to this podcast? Have you?
Because we have a mutual friend, Doreen Alexander, who had him here on the gift of life, he taught us how to dance, or he tried to try to best, or just not dancers. But, so we're curious, just as you're trying to soak up all this information, any takeaways besides, you know, kind of what you just mentioned about donation and education. I mean, it's funny because people are constantly asking, but have you benefited from this? And I said, well, you have to describe benefit, because some of those benefits are illegal.
And then I slightly escaped my mind that they did find a small kidney stone during the evaluation. And as a result of donation, I no longer have it. So that is the one single medical benefit I gave a kidney and a rock. All right, Nina, we could talk to you all day.
You are amazing. We love the work that you're doing. And we love that you're just spreading information. That's what we try to do.
Information is key, right? Exactly. All right, so someone out there is like you and Holiday comes up and they don't have anything to do. I think that's how your story started.
Where can they email? What can they do? What would you encourage them to do? Sure, they can visit hopetransclants.org and they can send an email to learn more about the clinical trial at Johns Hopkins by sending an email to Hope In Action.
That's H-O-P-E-I-N-A-C-T-I-O-N at J-HMI.edu. All right, Nina, we appreciate you. Thank you so much and we hope to talk to you again. Wonderful.
Thank you all so much. Up next on the Give it Life podcast, Dr. Christine Duran. Now, that sounds familiar.
She does. She's here on the podcast before, right? Yeah, we talked about HIV and Hep C donors in the past. Yeah, and the Hope Act.
Hi, Dr. How are you? I'm great and very happy to be back speaking with you all. Thanks for having me.
We've been reading a lot about you lately and we just heard some great things about you from a Miss Nina Martinez, a wonderful woman who's helping to make medical history, right? That's right. She's really the hero here. You should be hearing much more about her than me, but we are just very honored and privileged to have been a part of her story.
She is fantastic. And Doc, you know, I didn't mention it yet and if you haven't heard our podcast that we spoke to Dr. Christine Duran in the past, she is one of the drivers of the Hope Act. She's an infectious disease physician at Johns Hopkins in Baltimore.
And she's like I said, has pretty much been in the driver's seat, turning the Hope Act into what was just a policy into what's now life-saving action. And in the past, our focus has been the Cease donation. Of course, we've been involved at Lopa and Louisiana. We've had three donors here.
So I wonder, Doc, what opened the doors to start looking into living donation as an option? Well, the Hope Act was both HIV-positive people to be deceased or living donors. And we wanted to start with the Cease donation. That was the first trial we put together.
And we opened this a living donor trial shortly after that. So before we went into this uncharted territory, we really wanted to make sure that it was safe for people living with HIV to become donors. HIV is associated with kidney disease. So many people thought if someone with HIV donated kidney, are they going to be more likely to develop and save renal disease themselves and end up on dialysis?
So to understand that better, before we started doing the transplant, we did some research. Dr. Abi Mizalini, our group published a paper in the American Drug Plantation, which showed, yes, there is an additional risk associated with HIV towards developing as a kidney disease, but it's a small risk and it's an acceptable risk. It's comparable to other things that we allow living donors to have for example, smoking.
And so once we talked about the risk was really small and acceptable, that's when we felt it was safe to start a trial. Okay, and any changes we talk about deceased donors and living donors, so is there any big change with surgery or prep on your end? I think the biggest risk again is to the donor for developing kidney disease over the long term. So what we do differently is we just really optimize all the other risks.
We look carefully, do they have blood pressure? We make sure they don't have diabetes. We look for they really go other factors that might look like that with kidney disease. And in the past, our HIV medications were talked to the kidneys, but today with modern anti-retroviral regimens, that's really not the case.
And so we look carefully to make sure the donors and the distancing now was on an excellent right-of-the-net. We really wouldn't put her kidneys at any other level. So a lot of what we're talking about is what would happen to Nina's one kidney that she still is living with. So a lot of the public and even those in healthcare, some would think that, well, because she's living with HIV, that she's probably immunocompromised to the point where she might not even be able to survive the whole surgical procedure.
So was there any added risk from your standpoint as far as just that initial surgical procedure and the immediate following? HIV in 2019 is really a different thing than HIV, say, 30 years ago. And I know many people still think of it as AIDS, as an ass sentence, but we have such incredible milestones with HIV that it's really a chronic and manageable illness. So Nina was put on treatment very early on, excellent care, and is really as healthy as HIV and negative peers.
And so the things that HIV has changed dramatically, she did not have any of your compromise or immune system with any of your health factors that we looked for before moving forward with her doing it. And Nina is great because she said, I just wanted people to know that this was possible that we can save these lives. And so you're really kind of pushing the envelope. So are you encouraging folks to go to these centers because I know Johns Hopkins is leading the way?
Are we going to see more of this, do you think? We are certainly encouraging people whether they could eat a talk to their providers about it. If they have a loved one or a friend that needs a kidney who's also living with HIV, they can come forward to be evaluated as a donor if they want to. And we have had interest even from people who are what we call non-directed donors.
So like Nina, they are stepping forward to be as a kidney to someone that don't even know that they haven't even met yet just as an act of altruism. And can you give us just a timeline, you said in 2019, man, things have changed. And that's what we say out in the community like, wait until tomorrow, who knows what we're able to do. So there's a timeline on the hope back to where we are now.
Well, the hope back really the idea of the hope back started in 2010, 2011, 2011 after the new one talked about the head public services of HIV, HIV, and kidney transplant in South Africa. And that is why I say again, I was like, getting transplants that are hotbed and really the whole community to say, you know, we need to allow for this to happen in the United States. So then they conceived of the hope back, the lobby Congress, and passed unanimously in the House of Senate and signed under the Obama-Inch-113. In 2015, we finally have a federal budget and the body, the vetoes which oversees all organ transplantation, they changed their policies to allow for it to happen.
So we opened up for setting in 2016 and then in 2019, we did the first living ownership. And you mentioned in the past that, you know, I know when we got involved here at LOPA, there was about, I want to say, around 100 or so, or maybe even less donations that had taken place. So where are we right now? And where are we with expanding that pool?
You mentioned liver and kidneys, you know, but what about expanding that to hearts and lungs? Yes, we really made some great progress. The first two years of home 2016 and 2017, early years, a little bit slow. But in 2018, we really saw a larger expansion of donors and we now had more than 120 kidney and liver transplants.
It's amazing. We hope that the next step is actually going to be heart and lung transplants. Initially, the organ procurement and transplantation at work where they changed their policies did not change policy to allow for heart and lung. But we've now just had a large discussion about that amongst the transplant community.
It was opened up to public comment. And I believe in the next few weeks, we should see the policy change to broaden even further and allow for HIV, HIV, heart and lungs. I think that's coming. And Dr.
Darrant, are there any other benefits that you see for HIV-living donation that we may be having discussed yet? Well, I think obviously it's a medical milestone and yes, has saved a life. But I think beyond that, it's also a huge milestone is just changing the way people think about people living with HIV and hopefully a step towards decreasing the stigma and the perceptions that still remain. And a life saved.
My goodness. I always love when you come on. And you're always doing something exciting and groundbreaking. So we appreciate you, Dr.
Darrant. We hope that we hear from you again on The Gifted Life. And tell Nina we said hi when you see her. Absolutely.
Thanks for having me. It's always a pleasure. At this point in the Gifted Life podcast, we're going to take a moment for mental health with Ms. Sarah.
Yeah. In the last couple of episodes, you guys heard us talk about self-care. And in today's episode, we'll be talking a little bit more about practicing gratitude. Yeah.
So like we said, we're going to talk about practicing gratitude and how it is a way that we can participate in our self-care. Essentially, you know, when we think about gratitude, it's not in terms of self-care, it's not an attitude, but it's an intentional choice to actively participate in our dialogue when it comes to what you're grateful for. So what it is for self-care means it's intentionally taking parts of your day and your moments to be grateful in the moment for what you have and what you're able to do. Yeah.
You know, it's funny because I got me some, my wife bought me some fancy VR goggles for Christmas. And one of my favorite pastimes, especially at night when I start relaxing, is to meditate. And my favorite meditation exercise is the one about practicing gratitude. And I recognize myself during the day thinking about the things that are that have been done for me that, you know, normally I'm like, yeah, that's great.
You know, it's good. But then actively practicing gratitude is a little bit different in that you recognize. It really forces you to think about what everyone is doing, what, how, you know, maybe your job, maybe your friends and family and all that and the different things that they add to your life. Right.
It's, you know, it's reworking our, like I said, internal dialogue. So instead of just passively participating in your life, it's actively recognizing what you, the abilities you have, what you're capable of and what's been given to you to actively say, thank you and to feel grateful. Yeah. And that kind of sets the tone for my day.
My mom and bear got a lot of little ones. So it's constant chaos, especially in the morning trying to get out and make it to a destination. So as we back out, we touch on all those things, the people that we're going to be surrounded by that day, the home that protected us from the rain this morning and different kinds of things. It just, we're so stressed and we're running and that kind of sets the tone like we're going to be happy.
We're grateful. It's going to be a great day. Right. And you can incorporate it into things that are in your daily routine.
So if you exercise daily or three times a week, incorporating into that makes it real. So when you're exercising, taking just a moment to say, I'm thankful for the ability to even be here at this time and to have a functioning healthy body. And with the people that cross fit and things like that. Yes.
But I wave at the gym when I pass by. But what you're saying to that point is, if, when I find myself not really focusing, it's easy to fall into kind of a negative train of thought. Because as you said, so often you have so much going on. You've got the kids and you trying to wrangle all of them together and keep them all in the right direction.
And it's easy to fall into the little things. Oh, I can't believe, you know, he spilled this or she did this. But when you kind of refocus your attention to those positive things and that are truly grateful for everything that you've got, it just, it really, like you said, it completely resets and sets it on for a better day. Yeah.
Let's face it, life's hard. So it's, if we can just like put one little thing each day that we're grateful for, I think it can improve our inner dialogue to focus on, like you said, the more positive helpful things in our life. Yeah. Because one thing would go wrong and then the rest of the day, don't you think about coming over here and so I had to work that.
Right. Self-care. It's absolutely self-care, which is helping us improve and be more successful. So if you are looking for a way that you can start practicing gratitude, there are, of course, there's an app for everything nowadays, especially my favorite, which is the Gratitude app, which sends you daily quotes of positivity and success, as well as let you log something each day that you're grateful for.
I like that, Mr. R. Thanks so much. You're grateful for you.
Aw. In every episode of The Gifted Life, we honor a hero. Today's hero, Randy Parent. Yeah, we received this from his family.
Randy was 58 years old when he passed from a heart condition. He was a loving husband, father, and grandfather. He left a fish in his pond we had on our property. He will be missed dearly, but he is in a better place where we plan on meeting him.
And now we pause and say thank you to Randy for the gift of life. And our question and answer segment today, a little different, guys. So often in the community, we talk about preferred language when it comes to donations. When we train our volunteers, when we're giving presentations, for example, we prefer to use recover versus harvest, right?
So we were wondering after talking to Nita, who was great, right? Nina's interview in this podcast. But there was preferred language to address the stigma for people living with HIV. And guess what?
There is. So we went ahead and reached out to one of our local experts. And Mr. Dorian Alexander, who provided us a resource for using preferred language to address stigma.
So we're going to make it available on the gift of life.org or in our show notes. And we want to hear more from you. Please email if you have a question to info at the gifted life.org or you can also give us a call. That number is 504648 347.
We may even play your message on a podcast. And that'll do it for this episode of the gifted life. Thanks so much for listening. Yeah, special thanks to Nina Martinez and Dr.
Christine Duran for sharing in their story and especially Nina's story of being the first HIV to HIV living kidney donor. The best place to find us guys on our website, thegiftedlife.org. Listen there and find links to listen on Apple Podcasts, Google Podcasts, Spotify, or anywhere you listen to your podcasts. If you do listen on Apple Podcasts, please leave us a five star rating.
It really helps others find our podcast. Absolutely. Don't forget about rating us. And if you're on social media, like our page on Facebook, the Gifted Life Podcasts, and follow us on both Twitter and Instagram at Gifted Life Pod.
Good information coming at you there. And hopefully together we inspired you to register to be an organ tissue and eye donor. If so, register me.org. That's the place you go, the one-stop shop guys.
And thank you for being part of our team. Go out and do something you would normally do to help us make life happen. Until next time.