And welcome to the gifted life podcast where we have conversations about organ tissue and eye donation. I'm Sally Gentry and I'm not Joey Boudreau. What? You are not.
So Joey Boudreau supposed to be there. Who are you? Kirsten. Oh yeah, we know.
She feeds us. Yes, we like her. Yeah. So we don't know where Joey is.
Is that? That's true. But accurate. Okay.
So yeah, he's not here. I think he's still recovering from donate life. Oh, could be. He was busy.
We were all over the state. Yeah. I came down a little something. It was a whirlwind.
Yeah. Blue and green. Blue and green day. Okay.
So check out our social media, donate life, Louisiana, our Facebook page, Twitter and Instagram. We're at donate life, LA. But I love this day because anybody can participate. And all you have to do is shoot us a picture.
So we had dogs. We had folks just dressing up in blue and green. We had big so much creativity too. Yeah.
I love that. I love the bow tie. One of our dogs had a boa. Thank you very much.
A boa for the bow wow. And then we had a business and a donor mom is tied to this business farm bureau. You'll see this on donate life Louisiana. And her hero is Will.
And so she started spreading the words. She goes, let's do something. Right? So they pulled their money.
They're going to make a donation to Loba. But they also took a group picture. And she goes, if you were tied to donation in some way, shape or form, bring a picture of your loved one. Someone, okay.
So they came with their pictures. I mean, that was pretty powerful to show that the state office participated. And they were so tied to donation outside of this donor mom, which was pretty cool. So we love doing that.
We had flag raising. We had butterflies flying in honor of heroes everywhere. Those were pretty cool. Yes, they were.
Some people say I had too much hairspray because I got stuck in my hair. I probably did. But butterflies survived. It was great.
And it went up. It was a blessed butterfly. It was a lady Gaga moment. Probably right?
Yeah. Well, I smell sweet that. She's probably going to do that. Ooh.
The meat is going to go for the butterfly. Yeah. Tracks butterflies. We had pinch of Beloosa.
Pinch of Beloosa was amazing. Great participation. That was new. Right?
Yeah. And first year that we got to partner with them and they were wonderful. That was amazing. And then, okay, I saw this on our social media page.
And I was so sad that it wasn't happening where I was at that moment. But Drew Brees, I think he was looking at me. I'm just going to say. That was me.
That was there. He was there. He was looking at me. All right.
So we were doing this card release for JJ. Yeah. So little JJ, we did these promotional football trading cards for him. All of his famous friends had been sharing.
So that's a good thing. It was a great event. And Drew stopped answering. Drew Brees got assigned.
He did. Actually, they each signed a card. Jerry's had him sign it too. Well, then I was getting phone calls because we posted on our social media and we asked people, you know, follow us on there.
And so people were texting like, Hey, can you get me one of those cards? I drew Brees and JJ and I said, there was only one. There was only one. There was only one.
Only for little JJ. He was really busy and he really breezed in and breezed out. Yeah. He made time to show support and show Jerry us in love.
One thing cool. And then we saw the New Orleans Saints. They had posted well wishes for JJ as well, which was awesome. But Drew Brees just achieved the duty.
And then when he helped out donation, like, could you get any cuter? I think not. And we really appreciate his support. And then a week later, a little over a week later, got his liver.
And we want to share with everybody that his dad said that the surgery went great and JJ is resting now with the new working liver. And he's just asking for everyone to please continue to pray for him and his donors family. They are always cognizant of that gift and where that gift has to come from and want to pay it forward and thank the donor family. So JJ, we're thinking about you.
We're hoping your recovery is going well and we can't wait to have you in the studio again to give us an update on how that liver is going. And April was fantastic. Now we're in May and May guys, Assistic Fibrosis Awareness Month. To kind of tie that in, we are going to talk on this episode about lung transplantation.
That's right, Lori. And we're bringing in one of our partners from Ashner Transplant Center, Dr. Ray Rampola, who is the head of the lung transplant program there. So we're going to get the scoop today.
And we're going to hear from a donor mom who after 20 years heard from her daughter's lung recipient. 20 years. Yeah, that's going to be pretty powerful. We'll also honor a hero and more here on the Gifted Life.
And folks, we want you to help us spread the word. That's one thing that you can do to help us make life happen. So you listen to this podcast, share it, right? We're trying to make it as easy as possible.
That's right. You can find us on Apple Podcast, Google Play, Pocket Cast, or any of your favorite podcast apps. And don't forget, you can also reach us at 504648347. We'd love to hear from you.
Give us a call. I'm going to go to the Gifted Life and Play, your audio on this podcast so that you can reach others, maybe going on the same journey as you. Lots to get to. More to come on the Gifted Life.
Okay, guys, we're talking long transplantation. Joining us by phone, we have Dr. Ray Rampola of Pochner. And he is helping to make great strides in making life happen.
How are you? How are you guys? Thanks for joining us. Hey, Dr.
Rampola. This is Kirsten. One of the first times I got to meet you was working with a patient many years ago, Mike Diaz. And he did something really cool to honor his gift afterwards that you help him see through.
You want to share with the audience what that was? Well, I do remember to Ron slash walk the credit for the classic, right? That's it. And he asked me if I wanted to run in and walk with him and family and I said, well, of course, why wouldn't I?
I love that. We just walked. I think the only time we were running, we just trotted by the finish line. The news picked up on it and they didn't say that on local news.
It was a lot of fun. I got to meet some of you, a lot of you, finally, on France. It was beautiful. They, I remember.
Yeah. It was a lot of fun. They're so impressed that you did that with him. I was like, that's taking patient care to a whole new level.
The other thing about Mike is like, his parents actually, and this is just like a funny side note. His parents went to Puerto Rico, which is where I'm from originally. And they just happened to get into this tour bus in Puerto Rico. And when they saw the name of the driver, they asked if the driver knew me because he would say, I had my left name and I got to touch the driver with my cousin, who was okay.
He couldn't get away from you. He put me together and he sent me the picture like, I guess one minute. It's like, oh, this is my guess. The point is that.
That's awesome. Man, that is really small world. So Dr. Rimpola, the passion that I observed with your treatment to Mike is one of the things that I see throughout our work together.
Since we've been working with you, Joey shared with me that our long donations have really gone up over the years. Thanks to your help with the donor management protocols. We went from about 30 long donations a year to now we're averaging about 80. So what kinds of things have you been able to implement to make that happen?
Well, one of the things that I helped them, the Artranonc Delft program had been, obviously, 1991, you had to be open by the group of families, our most senior pulmonologist at the institution. In 2005, I went to Katrina. It was closed. And 2009, I decided to open it back up.
I joined Oshner to help bring the program back up. The first thing that I did was that I contacted Lobot to see what kind of donor management they were doing for the long. And I reviewed them and I gave them what I thought needed to be done, which was basically more of an ventilator management of the donor to make sure that we recruit the longs and keep them as healthy as possible during the procurement time. Because we don't know exactly how long it takes in the patient to come right there and start doing their work until they're going to be procured.
I mean, it could take sometimes six hours, it could take sometimes 40 hours. I mean, you guys work with this every day. You know how it is. And so I just implemented some protocols with Lobot to make sure that we're keeping those long and healthy as possible.
How do we do that? Well, if we ventilate them too much or we give them too much oxygen or we give them too much air, that can continue too long. So we put a protocol that kind of minimizes the oxygen they're using. It's going to minimize the volume or amount of air that the long is actually going to be beating in and out.
Plus other management's going to be antibiotics and you know, going too much food with so much support, which is basically just basic critical care deal. Yeah, and I know that longs have been tricky for us on the donation side, but if you want to understand, it's one of the more difficult organs to transplant as well. First of all, there's a lot of fights matching with everybody's going to be the same. We're going to get, you know, a donor that's got the possible recipients of this.
Then they're not going to be exposed to anything due to that long and cause rejection and the craft of failure and so on. So Dr. Watt would require someone to need a lung transplant. One of the most common diseases that would push for transplant.
Patients were out from period time or from when I give tissue diseases, put them in hypertension. For most patients, is there an average life expectancy after transplant? The natural statistics were once by age, you know, from 85 to 87 percent. There's numbers gone up over time.
There's been advancements in other fields. I think the one year survival has improved since three and five years of survival. Those have scar. Why does that happen?
There's many, many mechanisms. There's a lot of research going on to try to tackle each other at the same time. That's trying to slow the progression. Well, it's still to this day.
I mean, there has not been a lot of improvement of that 3 to 3 to 5, 5 years of survival after lung transplant. Dr. Raim Pola, how do you prepare a potential recipient and their family for lung transplantation and then aftercare of the person and the family? Well, the patient on a go through an evaluation by a social worker, a financial coordinator, because it's patient of getting transplant.
You know, almost 24 hours for a certain period of time. You need to make sure you try to educate the patient with them in the list. All the things that he didn't care to children or somebody, which is not how are you going to get the money. Now, we try to identify every single plant after lung transplantation.
Right. A lot of issues to address. Yes. After they've received the transplant and everything appears to be going well, what sort of aftercare then do they receive?
Do they come in weekly or monthly or how does that work? It all depends. In the first month, then I see them every month until they are one year post-dressed. So, after the first year, then we start spacing it out to three months.
And after three years, then after five years, we do a physician because they're going to have to develop all their medical conditions for pressure, IV, high-techinities. Well, we had a donor mother speak that she received a letter from her daughter's lung recipient. This is from 1994. And the recipient is still doing well.
I mean, it's been a long time out. And she's able to travel. She's able to do a lot of different things. And it just seems almost impossible when you hear something like that after looking at the statistics and hearing what you're saying, that this young lady has just obviously thrived and things must have matched perfectly.
Wow. I think that will have gotten better. It's just a matter of time. I know that there are certain things that have helped with other organs like the kidneys.
There's a kidney pump. And I read recently that they're working on something like that for the lungs, a lung perfusion system. Yeah, there is a lung preponderance. They're seeing big outcome differences?
That's the thing. You know, like, and this is something that every time I go to a meeting every year, I try to get a feel of what people are doing to do. They're doing to these more donors. You can buy a place and you can condition them for four to six hours.
And then you can use it on a user. Okay. So, there are places that have been used in a consumer's donor pool by 15%. Now, really, there have been two studies done with two different machines.
One of them said, like, okay, if you use our machine, you're going to have less primary blood dysfunction, which is that the organ does not function right away. As far as survival, the enthusiasm has a machine in a lot of places. I mean, I'm not saying that it's never going to be used, but the two cells are going to win a little bit. That's really interesting because we had a doctor from Hopkins come on to talk about using hepatitis C kidneys for non-heptitis patients.
Yeah. So that's great that you all are looking at it for lungs too. I would imagine that would expand the pool quite a bit. That's something that we're going to really go to our experiment and not do it.
Right. Let's get that. You've always got your finger on the pulse of what's going on out there. Yes.
I tried to. Now, doctor, before we let you go, I know that we have a volunteer who was in need of a double lung transplant received at the end of April, but mom was trying to do a lot of research. And so for somebody who may be facing transplant, I know there's Google out there and they try to get as much information as possible. But where would you send somebody that was in that predicament?
You're looking at sensors. You can always go to the SRTR. The best research could also be that patient. Okay.
We appreciate that information. We want folks to have the facts out there. So good advice. And if you have a question about lung transplantation, maybe something for the doctor that we can pass along info at LOPA.org.
Thank you, Dr. Rimpola. Hey, guys, it's time to introduce you to our friend, her name is Sandra Brown. Hey, Miss Sandra.
Hi. You have quite the story. Touch my heart. I met her.
I went to our donor family, picnics. And I was just blown away by her story, which Sally, you already knew. Yeah. Yeah.
And Sandra. We've known each other 15, 16 years. Something like that. Yes.
And you guys are only 20. This is amazing. I know. It's amazing, isn't it?
Yes. Well, you know, I remember with all the times I would see you at different picnics or different events. And then that day came when the letter showed up. Yes.
Tell everyone. Tell the audience. Because I think this is such a wonderful story. And I'm just so happy for you.
Your first phone call, so 2014 for me to return the call. And so let's put the pieces together. So, Miss Sandra is a donor mom. And your hero is who?
What's her name? Katrina Johnson. Katrina Johnson. And she was a hero back in what year?
1994. 1994. So then fast forward to Sally leaving this message in 2014. What did Sally have to tell you?
Say a recipient that received... Wow. So 20 years later, that's the first time you've heard from a recipient? Yes.
And so, Sally, this is 20 years ago. So it wasn't common practice. Oh, no, not at all. No one was encouraged.
Sandra, you weren't told anything at the time. I know. And so, you know, just out of the clear blue for this young lady to write was just the first for me. And obviously, a first for Sandra.
Yes. So, tell us what you were thinking. What went through your head? What were you feeling?
I mean, this is 20 years later. You knew you did the right thing, right? By saying yes to donation. Right.
And it was, you know, to receive something like that. So, had you just thought that you would not hear and you had just become kind of okay with that? No, I really hadn't given up. I'm praying that everyone.
When was the first time then that you got to meet? I met them down to Louisiana for, I mean, to meet the family. And Miss Sandra, when we met, you shared that letter because you were carrying it with you. And I love some pieces of this letter that I'll share if it's okay with you.
Oh, yeah. So, so Jan wrote, if I were to receive longs, that I would live life every day like it was my last. That's an excerpt from the letter that Sandra received. And also, it says, your daughter and I have had a life full of adventures traveling the world, which is pretty cool because what did Jan tell you?
She's up to these days. This travel world. I love that. She said the last time I talked with her, she was going different continents.
So. Wow. And you guys kind of keep up with each other? Yeah.
Has she ever shared with you what life was like before? She received her transplant and how it's changed. Yes. She said a lot of pain.
Another passed away when she was five years old. So her grandparents and she was very sick. How old was she when she received Katrina's songs? She was 18.
And Katrina was 18 at the time of the donation, right? Yes. She was. Well, Katrina's got to do a lot of traveling then through her, hasn't she?
Yes. So, Miss Sandra, 20 years ago, what did you know about donation? You just thought it was the right thing to do or, I mean, that was before we talk about it as commonplace these days. Well, yeah.
Wow. She's a hero. And Sally, what does the story say 20 years later? I mean, that's stills hope for.
Oh, absolutely. Yeah. For all those folks that think, oh, I'll never hear anything. Well, Sandra's living proof that yes, it can happen.
I'll never forget that smile, Miss Sandra. And did you do a quilt swear? We talked about that here at Loca. We talked about on the gifted life, but I met you looking at quilt squares and blankets at the family picnic.
So you have one? Yes. Yeah. What's on it?
It's up. Oh, wow. We just love your story. We love the hope that it brings and we just love you, Miss Sandra.
Thank you. Thanks so much for sharing your story. This is wonderful Sandra. And so good to talk to you besides at the picnic once a year.
Right. Right. It's always a pleasure to talk with you. It is now time to honor the hero.
Yes, Lori. We're excited to have Miss Sandra come back and share her daughter's story, her hero. Miss Sandra, would you please tell us about Katrina? Yes.
We called her. What's a quiet person, especially believing God? About a month before she passed away, she had just traveled to Las Vegas. And when she left, I mean, she left with a smile on her face.
About a month later, suffered an aneurysm. And he was put on a court. And I made the decision of donating her arcing, which stayed for people's lives. Katrina's liver went to a 46 year old father in Missouri, a kidney to a single man and a 66 year old woman.
She told me to treat what we began and her lungs to a hero girl, a statistic type, and she was just a loving person. Every day, I received the letter from the recipient and I received that letter. Really the best mother's day gift I had ever received. You know, I just want to encourage everybody to start a donation into New Life.
Well, and I think with what you've just heard from Sandra, letters can make a big, big difference in someone's life. Hopefully you will hear this and you will want to reach out to your donor's family and say thank you for the gift of life. Right now we're going to pause and say thank you to Katrina for the gift of life. We've reached our question and answer segment here on the gift of life.
Let's change things up. What do you say guys? That's a great idea because we like comments too. Yes, we want you to talk to us.
And the only way that you can do that. Well, not the only way, but the best way. Oh, yes. There's 504, 648, 3477.
That's a hot. She knows that number backwards to her. She didn't even look down like she's got it up there. Pretty smart.
It's out. It's only because I call the number on occasion just to see what it sounds like. She leaves funny messages. That is true.
Which crack is up. So we have heard from Julie to Manello, Julie to Manello in the Baton Rouge area of Louisiana and her son received a gift and she called in with a comment. Let's know all about. Let's listen.
Hi, good to see you like human. Hello on Wednesday, April, the 20th, my son, Zachary had a much needed bilateral lung transplant here in Austin and in Orleans. And we just wanted to say thank you so much to our donor family. We don't know you, but we love you and we thank you so much for giving our son a gift of life and a chance to win his battle over the horrible disease.
He has a PF. So I just wanted to say thank you and I encourage everyone to go out and get that part going. So I'm your driver's license. Thank you.
Bye. And thank you, Julie, for taking the time to call in to let us know about Zach's progress and just a reminder, May is Zistic Fibrosis Awareness Month, but she is helping us spread that word as well. And Julie, thank you so much for thinking about Zach's donor family. Very nice of you to keep that in mind.
And we're thinking about you, Zach, and wishing you a speedy recovery. Another power-packed episode of the gifted life guys. Love our partners. Yes, thank you to Dr.
Ray Rampola from Ashener for coming on and sharing all of his knowledge about lungs and lung donation. And so great for Sandra to share information about her daughter. That's pretty cool. Really?
I mean, that's a lot of years to wait. And then finally, you hear from the lung recipient. How fantastic. I just remember seeing her smile when she told that story to me and our family picnic.
I'll never forget guys. She mentioned about the quilt swear being on the website, our LOPA website. So I would like to let folks know that if you've not submitted a quilt swear and honored your loved one, we really encourage you to do so. Take a look at the quilts on our website.
And I think that you'll find some inspiration there that you might be able to come up with something that you would like for just for your loved one to recognize him or her. So please do that. And also, I would like to encourage any recipient out there who has not yet written to your donor's family. Don't put it off.
Sometimes other factors in life happen and you don't want an opportunity to pass you by. That would give you that chance to say thank you for your special gift of life. That's just good life advice too. All right.
And thanks to all of you who continue to help us make life happen. I do want to mention this party band that helped us impose it on their site bag of donuts. So if you're from Louisiana or maybe outside, makeup, costumes. They're just fun.
They're just fun. But they know about donation and they help us promote donation during National Donate Life Month, which I thought was pretty cool. Some of our students that we work with at LSU had a connection and they just gave it a shot. I said, you're going to hear no a lot in life, but you may hear yes.
And on this one, we heard a yes and it was a big gift. So we like that. It's a bag of donuts. We love it.
And you can find that on our Facebook page. So donate life, Louisiana, check that out. But most of all, we hope that you share what you learned here today. Share this podcast.
And then we hope that you go out and do something that you don't normally do to help us make life happen. This is a production of the Louisiana Organ Procurement Agency, or LOPA. The gift of life is hosted by Lori Steele, Goieboudro, and Sally Gensri, our producers are Kirsten Heinz and Shalom Caraway. We are recorded, engineered, and mixed in our Metery Louisiana studio by Troy Perez.