Hello and welcome to the gifted live podcast where we have conversations about Oregon, Tissue and I, Donation, I'm Roy Steele. I'm Joey Boudreau. And I'm Sarah Blakemore. Whoa, that's different.
Who are you? What have you done with Sally? I've hijacked her seat today. I know, I know, I know it's a hair a little longer but I couldn't seat through the microphones.
Well, now I am seeing this in memo. She's all learning. Learning to bring back to the table. So Sally, how are you?
I'm doing great, excited to be here. Yeah, long time, donation, advocate, awesome, happy to have you girl. You know what's coming up today? Yes.
Well, you're going to talk about what we're talking about, Taryn. I like her. You like her? Never mind.
We're talking about honor, the gift guys. Yes, campaign to protect the gift of life by removing Medicare's three year limitations on antirejection, every emergency. And we're also going to go ahead and talk about the signs and symptoms of traumatic grief and how to support someone who has experienced it. Lots to get to, right?
Yes. But first our goal is to get you sharing this. Having those positive conversations about donation, you, you right there, you're part of our team. We need you to share what you hear here.
Yes. And as always, we are easy to find. Once you find us, read us and subscribe. You can find us on Apple Podcast or whatever your favorite podcast app might be or find us on our website, giftedlife.org.
All right. younger than Joey at least. But on social media? No, not.
Yeah, you can definitely find us on social media. We've got Instagram, Facebook, Twitter. Look for us. Is that how you guys communicate these days?
It is. And slide into the ends left and right over here. There you go. On Facebook, where the gifted live podcast, Twitter, and Instagram at giftedlifepod.
Check us out. Help us spread the message. What we're trying to do is make life happen. You guys ready to get to it?
Yeah. Here we go. All right, guys. Here on the gifted life, we have an important topic to talk about with some very passionate folks who are pushing this.
It's called honorthegift.org, which is where we're going to push you to get more information. Monica Fox joins us now. Hi, Monica. Hi.
Hi. Also on the phone, we have Dr. Matthew Cooper. Hey, Dr.
everyone. Hi. We appreciate you guys joining us. Monica, I'm going to start with you.
We know that you received a kidney, the gift of life, back in 2016. So tell us if you could about your journey and where you are now. Yes. So I did receive the wonderful gift of a kidney transplant from a deceased donor.
Thanksgiving of 2016. It actually happened on the night before Thanksgiving. So it was the best Thanksgiving ever. All right, giving things.
I can see that. Yes. And it actually is the gift that requires action. So just a mere thank you would never suffice.
So it requires me to be active and every day to do good works to show my gratitude for this second chance that it might have been given. Monica, I love that. Requires action. Yes it does.
And so what are you doing? What's your action? So my action, I started off volunteering with our local Oregon Procurement Organization. I love that.
I continue that because I did that all throughout while I was waiting for a transplant. And I have just gotten more and more into it to the point that now I'm working for the National Kidney Foundation of Illinois as the community outreach manager. Oh, OK. So I have just changed my voice as a yes.
I've used my voice as a patient with this experience to raise awareness for other patients who are following along the same journey, but maybe behind me. And there are just so many issues. Really transplants relatively new, new medicine. Within UNO, the United Network of Work and Sharing, is really only about 30 years old.
And that's basically when the government came into it and regulated transplant. And I celebrated with my transplant center, the 50th anniversary of transplant surgery last summer. We did not do the first transplant. But in the big scheme of medicine, it's not old science.
So there's a lot of awareness that is required. Medications are still developing and things like that. So there's lots of work to be done. All right.
And Dr. Cooper, I'm going to bring you in the conversation. Monica brought up some good points. But you're the professor of surgery at Georgetown University School of Medicine.
You're the director of kidney and pancreas transplantation at MedStar Georgetown Transplant Institute. So you know a lot of what she's talking about and the path that transplantation has traveled. Yeah, boy, after that introduction, I really think the experts are going behind the expert. That was a terrific introduction.
I've been really pleased and privileged to be in transplant for almost 20 years. And to the point, there still is a lot of opportunity in transplant. We still have the numbers of people that are waiting. Unfortunately, it doesn't even fully appreciate the number of people that could benefit from transplant.
The wait list recognizes only those that have actually gotten access to transplant services. There still are many hundreds of thousands of people that probably could benefit from a life better than end-stage organcies that we are still trying to work towards getting them access, getting them knowledge. Some of the other things that are probably unappreciated are the ability to be both a deceased and living donor. Misperceptions that if people actually sign their organ donor card on the back of their license, that they will not be cared for in case of a tragic accident or emergency, certain religions mistakenly believe that organization is against their beliefs.
And over and over, we continue as stated to try and knock down those barriers and correct misperceptions about how we can increase the numbers of organ for transplant and how we can bring the gift of life to more and more people. I have no questions in there yet. The challenge we have is just to supply and demand and trying everything we can to make sure that when someone is transplanted, we again don't put a barrier in front of them that potentially increases their risk of losing the organ, which is of course one of the important things we want to talk about today is how it's a challenge for post-transplant patients to care for their organ in and of itself with the immune system. But then where there still is a significant financial responsibility after transplant, there still is a significant expectation that the relationship between the patient and the transplant center stay together and work well together.
But again, we cannot make it more difficult for a successful transplant to remain successful both for that recipient and for the donor family. But just as again sometimes senseless to think of the things that we challenge transplant recipients with. Right and so Monica, as Monica mentioned earlier, transplant is relatively new in the grand scheme of things in medicine. And just to give a little historical perspective, in 1972 Congress made a commitment to cover the treatment for patients with end-stage renal disease regardless of their age or disability status.
And today Medicare covers the cause for end-stage renal patient to receive a transplant, but then only covers their end-rejection medicine for three years, 36 months. So I guess obviously, and you're talking about the issues and the barriers that we throw in there. So, you know, and a lot of patients don't have the money themselves to then pick up that cost at that 36 month mark. So I can imagine that that would have to be a difficult thing to not get retransplanted.
So then you guys started or have been part of the honor of the gifts campaign. So can you Dr. Cooper tell me a little bit about that? Yeah, so the honor of the gift was again, to bring to appreciation, to bring to the published recognition you know, the fact that this barrier exists for patients following transplant, i.e.
the restriction on Medicare payments, 36 months after transplants, and to in some ways shine a light on. The fact that there are many reasons why this current practice is not only full-hardy, but in the long run actually is, cost more for the government to actually stop the payments and have patients go on to lose their grafts, unfortunately. I want to minimize that, I'll lose their grafts and go back on dialysis. That if we were to bring the powers that be together, that have the ability to be able to look at this critically and potentially recognize that all transplant patients, not only because it's the right thing to do, but again, if we're gonna just talk fiscal responsibility, should maintain Medicare coverage for their inner spreads and medications for the rest of their life, that it ultimately saves the government money.
And so the campaign was purposely designed to bring more people to that appreciation, to bring more people to the table, to express their, hopefully their displeasure with that rule as well. It's really to empower transplant patients to be able to use their voice in conjunction with the general community, because we recognize that this is a societal issue. And so the more people who support this, the more people that are behind it, believe there's a better opportunity that we're gonna get in front of the folks that can make the decisions and correct it wrong. Yeah, and I just wanted to ask Monica, from her perspective, the increase in anxiety and stress that you must have felt when you learned that your coverage wasn't gonna be a lifelong coverage.
That must have been incredibly difficult for you to wrap your head around. Definitely, and I'm approaching that point. November of 2019 will be my three year mark. And prior to getting a job where I do have insurance available to me, the thought of this insurance coverage ending was daunting.
And I mean, really it still is, because I have a friend who's in a situation right now where she was working and had insurance coverage through work, she's a seven year transplant survivor, and she lost her job suddenly. And then was caught in a position without insurance. And so she's having to struggle with that. She was then put in a position where her unemployment insurance put her over the level to be able to receive state health insurance.
So you can see how it gets to be very difficult. In my case, I can take on my insurance to work. However, my out of pocket expenses will be much higher. And I'm working for a nonprofit and love to work for nonprofits.
But that's not the highest pay positions in the world. So it definitely is something that is burdensome that I really believe that patients shouldn't have to struggle with. And when you really have the conversation, because I've been to DC and I've talked with legislators and some of their aides about this. And when you talk about the numbers and you say, well, anti-rejection medicine costs $9,000 a year.
But dialysis costs about $90,000 a year. It doesn't make sense that they would take the risk that a person would not be able to meet that need of paying for their medication and possibly end up back on dialysis that's so much more costly to the government. And you mentioned the numbers. And it is startling to me and us, of course, when you think about it, we talk about barriers, we talk about a gift that someone gave you that second chance on Thanksgiving.
And then to have to basically have it self-limiting in so many situations. So Dr. Cooper, when she mentioned the numbers in 9,000 versus 90,000 a year, what are the biggest barriers that you believe that you guys are facing? Why?
It seems too common sense. Yeah, let's not get like common sense given the numbers. Right. Right.
Because again, that's really what it is. If you put those numbers in front of everyone, if people scratch their head from an economist's standpoint, I do want to back up a little bit and recognize. Again, that we do over and over talk about transplantation being the gift of life. And sadly, I don't think we do recognize that word gift was purposely and I think very appropriately chosen.
And you think about any other gift of your life that you are given from someone who cares about you. You would do, I would imagine, everything you could to make sure that that gift was appreciated, well respected, and if there was an ability to pay it back, you would do that. And so the piece that sometimes I'm not certain always gets appreciated is in order for Transplant to be successful, we have to recognize that this is oftentimes some of the most difficult piece of an individual's life where they decide to donate their loved ones organs, or an individual risks their own life. They're going to operate in room to be a living donor.
And if we aren't going to be able to appreciate and recognize the sacrifice that gifts that those individuals, again, so freely gave to someone else that they can have a better life, and not recognize that we get to treat that gift a whole lot better. And we do have the tools to be able to do that. As we said, even though it's a relatively new science, we've got pretty good medications that allow Transplant to give people two, three, four times the lifespan that they would have otherwise if they didn't receive this Transplant. And so we know it's there, we know that it's successful.
And the problem is that the insurance with which people had prior to their Transplant, and please don't misinterpret that, we look very carefully prior to Transplant to try and avoid these things for patients so that we don't put them in financial disarray afterwards, but we can't anticipate three years later that people are going to find themselves in this situation. So we know that if Medicare continued to pay for them, these Transplants would do just fine. And so again, the desire to kind of bring this finally, I hope finally, to its meaningful fruition and get as many people into the conversation about this, it's still that head scratcher. I can't give any better rationale for the numbers because if you just look at the numbers, they tell the story, you know themselves.
So we know honorthegift.org, we're gonna continue to push people there, but what's the ask guy? So we hear your plan makes sense. So what now? What do we do?
Well, we're asking Congress to honor the gift. We need for them to vote to extend Medicare coverage beyond the three year period. I mean, dialysis is a treatment for patients with end stage renal disease. And so is Transplant.
Transplant however, is a treatment that gives a patient a much higher quality of life and allows us to be much more active within society and to give more. So it just makes sense that old treatments would at the very least be treated equally. So if dialysis is covered for a lifetime, then so should transplant treatment be. The treatment is immunosuppets and medications once you receive that gift.
So we're asking people in general to go to the honorthegift webpage, sign on and be a part of this ask and let their voice be heard, along with my voice and those voices, all of those others who have already signed on to this really important message. So Dr. is the legislation written? Are we starting in one state?
And we're just trying to get this support. We have lots of folks who listen, who are students who are clinicians who have been impacted by transplantation. And so I know that they're gonna be asking, what about little me? Can I help?
What say you? I say every voice makes a difference. You know, the additional ask if we could be so bold is to recognize that the con- I've, con- I believe, and listen to their constituency. And so, you know, also contacting one's own congressman about the value of this transplant recipient, the owner family or not.
You know, every voice that gets onto the attention of their congressman, I think, has some value associated with it. Recognize this legislation, sadly, is not new legislation. It gets to the floor just about every year. It's sometimes a stall that various portions that I guess prevents it from its final approval.
But it is already written. And again, it's, you know, in various stages, you know, through that, the House and Congress, to the House and the, and I think, you know, we have a better chance this year because Secretary Azar, who himself, a family that has been affected by NC Greenville, sees this as a very personal issue. And I think, believes, you know, that this is, you know, the right thing for patients to do and for families to be able to honor that gift. And so, I think, again, this is our year.
I think, you know, the honor of the gift is just that. It's, you know, the ability to demonstrate that there are many, many, many people who are very much interested in seeing this legislation finally passed. So that, again, we can provide what is, you know, an absolute necessary resource for transplant recipients. And heck, it's just the right thing to do.
I mean, I'm not sure how much more you have to say. It's just the right thing to do. Yeah. You guys are great advocates for this cause, honorthegift.org, I'm gonna put that out again.
And we do want to continue to follow your journey. As you cross these hurdles, we'd love for you to come back. We appreciate you reaching out to the gifted life. And Monica, you've seen passionate and you seem like you're feeling strong and I know you're gonna be out there fighting for this.
Yes, definitely. This fight is very personal to me, as is every fight along this journey. So I'm definitely, I believe what Dr. Cooper said that this is our year.
It's gonna happen this year because it is the right thing to do. And I have to believe that, you know, people are gonna do the right thing. The congressmen, the senators, they're gonna, they're gonna vote the right way at that time. All right, Monica, we certainly appreciate you.
And we are going to continue to follow your story, Dr. Matthew Cooper as well. Thank you so much. I want to put this out there again, honorthegift.org, visit that site, check it out.
And hopefully we've inspired you to take some form of action. Also on Facebook and Twitter, it's honorthegift. More of the gifted life to God. All right, here on the gifted life, it's time to learn from Sally.
It's Sally's not here. It's not Sally's Sarah. Will we do? Say hey, Sarah.
Hi. I love me some Sarah, but I will always see Sarah as college Sarah. So cute, you still look like from way back now. But I'm at her at LSU.
She was a student, beautiful inside and out, obviously passionate, obviously a donation advocate. And now she's here. And now she's here. I heard her about her shortly after, because of course now she's a social worker.
She got a degree there. I helped her, right? Yes. And then here's Lori coming.
Hey, you've got to hire this girl. She's so good. She's so awesome. I hope I love her.
So now we put her to work. And then so do I get a promotion? She's so great. About this.
So now you are tied to donation, right? Yes. So my brother was an organ donor. And so that's how I learned about organ donation.
And immediately knew that this was going to be my path in life, that I was going to be an advocate for it. And so at LSU, we do media interviews. And we needed a media darling. Someone could comment and talk about this.
But he's been impacted. And she would never tell me no. She's why I just loved her because she was so passionate about it. She was busy and had the college courses and work.
But she really wanted to do it. And I think it worked out. And we're so happy that you're here. And so the perfect person to help guide us through this next conversation, we're talking about traumatic grief.
And I guess my first question is, how is that different from regular grief? Right. So traumatic grief is one of these new branches that we're starting to learn about. Essentially what it is is when grief is experienced dramatically.
Now that can mean a couple of different things. It can mean that you yourself already have a trauma history and have experienced a loss. It can mean that the death that you've experienced was a trauma from a trauma. Or it can be your closeness to the loved one who you have lost.
It can complicate your grief in a traumatic way, which can show and signs of symptoms of trauma. And we like to say a lot, grief is carried. So imagine you're carrying a big box and it's heavy. What does trauma do is say you lose an arm.
And you have to carry that same heavy box. But now with one arm and it's now complicated and it's traumatic. And the way you view the world has changed. And the way you've experienced the world has changed.
And that's trauma. So what we like to talk about is what it can look like is feelings of unreality, anger, hyper vigilance. Of course, there's some survivors guilty not. And essentially what it is, if you know grief and you know, trauma, when you bring them together, it just complicates things.
And so it's important to educate ourselves and educate yourself on what that can look like. Yeah, I think all of us know someone who's probably walked that path. So I guess my next thing for you is how do you support someone or yourself, right? So the first thing we say, you know, when it comes to grief and trauma is first and foremost, listen, lead with those listening areas.
I think it's, you know, especially in our society right now, we tend to listen to respond. I think it's really important to transition to listen to hear and to just say I'm here for you. I've got your back and you're loved and cared for. Now to support yourself is to educate yourself and to know that you are worthy of being heard.
You know, I think it's also true that a lot of people, we don't like to burden others. We don't want to make them feel upset or sad, but you have people around you who are supporting you and let them listen to you, let yourself be heard and know that you're worthy of that. That's such a true and difficult task sometimes for us. Because, you know, so often you're right, we do listen to respond and to listen just to hear.
And be there and support is so important. It's something that obviously we can all take a little bit from. So where would I find other resources out there, either on the internet or books or things like that? Right, so there's so many resources that there where we can educate ourselves and learn about our processes.
There's tons of books, an amazing resource for mental health is the website SAMSA, S-A-M-H-S-A.gov. And there's podcasts, you can listen to people with personal stories about their loss and their trauma. But I think what's really important when you're going in the route of healing is to get resources that are backed by licensed mental health professionals who have a concentration and experience in trauma and grief. Because they're going to be the true experts and how to grow and heal in your processes.
Hey, Ms. Sarah, we appreciate that info. We all learned a lot. You have something you want us to cover in this segment, info at thegiptidlife.org.
In every episode of the Giptid Life, we honor a hero. Today's hero is Milton Powell. We learn more about Milton from his recipient, Monica. Milton was a wonderful person.
I've learned about him through his mother. She shares that he was a gregarious character who never missed a holiday of visiting with her and loved sweet treats, especially the ones that she homemade. Thanks to Milton, I have inherited a terrible sweet tooth. So every time I think of something sweet, I think of Milton, my hero.
His family is, they are just pleased to know that he has given me life and that I am doing good things with it. And he also saved two other lives through organ donation, as well as enhanced countless other lives through tissue donation. And now we pause and say thank you to Milton for the gift of life. In our question and answer segment today, I'm going to shoot this over to you, Joe.
Why does one need immunosuppressants after transplantation? We've been talking about that today. So our bodies have immune systems in place so that they protect us against things like germs, poisons, cancer cells, basically harmful substances. Well, these harmful substances have proteins on them that are called antigens.
And of course, when someone receives an organ from someone else, those organs also have these antigens, have antigens on them that the body sees foreign. So the body thinks, well, this must be harmful to me. So in general, the bodies are going to go ahead and start rejecting, start attacking the organ until ultimately the organ fails. So these immunosuppressants essentially protect, they give you a little bit of suppression in that activity, that antigen, antibody activity, so that the organ is protected over that course of that person's lifetime.
Sometimes immunosuppressants need to change because of your body changes, your immune system changes. So sometimes you need a little more, sometimes you need a little less immunosuppressant therapy. But in general, it's something that we all need for a lifetime after an organ transplant. Wow, that's a great question.
So interesting. Do you have questions? Reach out to us. You can find us on social media, email, you can call us at 504648347.
And we might be able to play your message or answer your questions on the podcast. And that'll do it for this episode of The Gifted Life. And I wanted to tell you guys, this episode came together because of an email. So we're always asking you, share what you want to hear.
We're a team here. And that's how this came together. So we appreciate the team effort there. Yeah, we thank.
It was powerful. Yes, it was. We thank Dr. Matthew Cooper and Monica Fox for sharing their story.
And especially for taking the initiative with the honor of the gift campaign. We certainly hope that Summer Farm takes place this year. Yeah, we're gonna continue to follow that and hopefully have updates here on the Gifted Life. And then we want to hear from you guys.
So please do that info at thegiftedlife.org. And Sally wasn't here. We miss you, Sally. We know you're listening.
And we love Miss Sarah. Yeah, thanks for being here. Thank you. I enjoyed myself.
Wasn't too painful. No, some big shoes to follow, but I enjoyed it. Well, you did great. We love that you work to make life happen.
Hopefully you heard something here on the podcast that inspires you to take action. Register me.org if you're not already a registered organ tissue and eye donor. But at the end of the day, our ask is that you do something you would normally do to help us make life happen. It's a team effort.
Thanks so much for listening. Until the next time. This is a production of the Louisiana Organ Procurement Agency or LOPA. The Gifted Life is hosted by Lori Steele.
Joey Buudro and Sally Gentry. Our executive producer is Kirsten Hines. Producer is Shalom Caraway. Intern is Rebecca Rannam.
And we are recorded, engineered and mixed in our Covington, Louisiana studio by Troy Perez.