Hello, and welcome to the gifted life podcast where we have conversations about organ tissue and ideonation and transplantation. Thanks for listening. You can always find us at thegiftedlife.org. I'm Roy Steele.
I'm Joey Boudreau. I'm Sarah Boudreau. Coming up on the Gifted Life today. We'll be talking to a dad whose son's illness inspired innovation to address the challenges and communication during the transplant process.
And we're going to learn two ways to build resilience. All right, lots to get to. Here we go, thegiftedlife.org. Here on the Gifted Life podcast, we are honored to introduce you to Mr.
Nick Jones. Welcome. Hi, thank you. We appreciate you joining us here on the Gifted Life podcast.
Remember guys, thanks for listening and tell your friends you can listen to us at the GiftedLife.org. Nick, I want to start with you and your tie to donation and transplantation. Personal, right? I'm pretty personal, pretty close to my heart, yes.
All right. Tell us about Matthew. Okay, so the story goes back a little way. My son, Matthew, had an extremely rare kidney condition back in 2012, which was initially diagnosed as a transitoric condition, became apparent a little while later, maybe September, 2013, that it was actually a life threatening condition, which was causing these kidneys to fail.
It was a little too hard to identify positive disease. That was, without any treatment plan, there was no cure, there was no outlook. It was just 50% of people within 10 years will need renal replacement therapy. The range within that was huge.
We found out about people within the UK with similar condition. One young girl we met went from diagnosis to kidney failure in three weeks. I think it was very similar. So how old was Matthew when this started happening?
He was 13 when he was diagnosed with the correct diagnosis. It really was a pretty shocking diagnosis. We were all struck into him to tell him something really. What was he suffering any symptoms that you noticed that led you to that?
Was it energy? What was it? The first symptoms were kind of classic kidney problems. He had swelling around his eyes, his ankles, and gradually everywhere.
In fact, by the end of his first bout of symptoms, we called him the mitchly man because he was literally blown up everywhere. He's normally a skinny boy. The transformation was pretty drastic. Of course, then he went through the classic symptoms of chronic kidney disease.
He struggled with his blood pressure, struggled with his potassium levels, and later on with his phosphate levels. His diet has had to be very restricted for many years, of course. Really, a lot of his life was very restricted because he was lacking in energy and just lacking with life really. He didn't have the energy or the life in TZO to live a normal teenage life.
I'm sorry. Okay, I'm sorry. I was just going to ask. So at what point for you guys did you realize it was serious enough to where you would have to make the big move from England to the United States?
So, 2016, we came to a family medical conference in Iowa City, helped by a great doctor called Richard Smith. We heard about Richard and his team through one of the other families in the UK. But Richard has become the world leading center for this disease because his own daughter has had the disease for 25 years. Would it be a disease without cure, without treatment plans?
There were some treatments which were peripherally effective. Drug called, eculizumabil, or salaris in the States is partially effective, but it's extremely expensive and not generally available. But there were no other effective treatment plans. So we haven't crossed the conference anywhere and we were blown away by the team.
We decided that nobody has any better chance of getting on top of this condition than Richard and his team. And we decided we just had to be here, the matter. So we went through some lengthy and expensive immigration processes in March 2017. We arrived in Iowa City.
And that was really a new phase of our journey. And we were kind of closer to the end of that phase than we realized because we were at that stage trying to fight to keep Mattie's kidneys. We thought with the right treatment, hopefully we could either retain his kidneys on term or at least put off the inevitable kidney failure. But that was not to be in fact actually.
Matt went into kidney failure faster than we expected. And by the end of 2017 he was on dialysis, which was kind of a shock, kind of disruptive, but the support we got here was fantastic. The people were awesome. So we knew we had done the right thing.
And as I said, it was round about a year later, Mattie was on dialysis for 13 months that I started working with the on-the-life team. And that was October 2018 and the end of November 2018, Mattie had the gift of life and he had a kidney transplant from a local donor. So I had spoken to Dalton, Dalton Shaw, I think he's the CEO there at On-the-Life, probably I guess around that time frame, I'm just thinking about it. And I know not to get into his story too much, but I can't retell it like he could.
But I know he also had connections to donation and transplantation. In fact, he had gotten a tissue transplant. And he had that passion. I remember that he was looking to be innovative in the field and just help the donation and transplantation process.
So that's kind of a little bit of the backstory. We'll get into a little bit more in a second. So here's Mattie and he's on dialysis for months and months. It must have been frustrating I guess for you guys to just sit there and know that his time may not be anytime soon.
What was that like for you guys as far as from the waiting process? Well, I mean, I think we're probably fairly unusual in that because we had two ways. We had two drivers. Obviously, we're not one side we wanted to get.
Mattie the best treatment and ultimately that was going to be a transplant. But at the same time, we had a cross cutting driver, which was that he has an autoimmune condition as the underlying disease. We were obviously concerned about recurrence. And there are there aren't happy in a number of drug trials going on.
So we were kind of, well, that's okay, actually. We will hang on to dialysis as long as we need to, as long as he can deal with it and give some of these drug trials a chance to come to fruition. Now as it happened, he didn't thrive on dialysis. He was struggling.
He was gradually losing weight. He was gradually deteriorating in many ways. So we had to, you know, we had to curtail any thoughts of hanging on. So in the end, we were just, yes, please, we needed a donation as soon as possible.
And thankfully that came pretty quickly compared to a lot of people. I mean, I said Mattie was on dialysis 13 months. I know a lot of people have to wait very much longer than that. So we know we were lucky in that respect.
So all in that time frame, so you know, of course, like you mentioned, a two prong approach where you are leaning on some medications and a regimen that way, but then knowing that, you know, that donation and transplant was another very real possibility. And you mentioned that you had gotten involved with OmniLife. So what was the introduction there and your understanding and what got you interested in OmniLife? And if you could tell us a little bit about OmniLife itself.
Yeah, okay. I'll rewind a little bit because I think he's relevant, but I'll keep it brief. So my background throughout my career has been in IT and in the last probably 15, 20 years has been in healthcare IT. So one of the things I did when we had my please diagnosis in the UK was I reached out and volunteered to the UK renal registry.
And I've done a lot of work with them, helped them to build a new renal repository data from around the country so they can do secondary analysis and research. And it was kind of really fortunate that my background had been in large scale, national IT. I worked a lot on the National Health Service. So I was well placed to help them.
And when I came to the States, I was kind of more working in big IT projects, but I was introduced to Daltne there very early on because of a common cause. And we talked periodically over a period of time. And then by the end of 18, they were looking to ramp up their approach to the problem and really getting to a more serious operation, which required more serious IT approach. So as it happened, I was becoming free from some of my obligations.
So I agreed to help them to take a step, pick that forward and start to help with the improving the efficiencies of the whole transplant process. And I think that at that time, it was really all about communication, improving communication at the point of transplant. But since then, we've gone on to address the problem in a wider way. So more about collaboration and communication and helping people who are performing on the transplant front, the OPOs, that whole myriad of people they need to talk to and the transplant centres to help that work much more efficiently.
And it's early days, but we're really excited that we can make a difference here because I know from my background in large scale IT that communicating across organisations with sensitive data is very hard. We've spent a lot of time doing that in the past. I come to the United States and of course, everywhere is so siloed still. There's a lot of drivers against that communication.
But if we want to make a difference in improving effective communication, then we really do need to break down those barriers. And we need to get people from an OPO in I would talking to transplant centres around the country and sharing data safely and appropriately, but sharing what they need to share in a timely way. So I'm very excited for the way that this is moving forward. And for those listeners out there, so one of the challenges, and you talked about sharing sensitive data across different platforms, across different organisations, is a huge challenge for us.
Of course, trying to maintain our HIPAA compliance so that we don't have sensitive data, someone's health information, just take install or whatever, we have to have secure means to be able to have this communication. And it has been a huge challenge for us in the OPO world and in donation and transplant. And of course, we have Donanette, which is our database that we put all the information in and it's a secure database and it has the donors information, it has recipient information, and we connect that way. But to have a more streamlined means of communication that's still HIPAA compliant and secure is such a big deal, it's such a challenge because time is life, for us, time is life.
And oftentimes, if we have to go through a cumbersome process to communicate, and we only have a few hours to do so, and you go from one transplant centre and then you communicate and you do another, what you guys are creating and have created and are creating is such an innovation that is, I'm hoping that is going to make huge advancements in having an app and if I can get into it just a little bit, as far as what I understand it, being able to have a HIPAA compliant application that allows for texting across entities, across organisations and allows for sharing of sensitive health information that someone can make a decision about a viable organ for their particular patient. As an example, in a timely manner, each time we share it, each time we have a conversation or communication with a different group, if it's 10 extra minutes each time, you're talking about hours and hours over the period of the case and, like I said, time is life. So for you guys to be able to see that as a, you know, in Dalton, I definitely applaud he and Eric and to see that as something to address, but you take the passion that you had for donation through your son's challenges and then work with them on this is just amazing and I applaud you. And if I can just get kind of your takes on that.
You know, we realise that the potentialist has to do good and as I said, we're really excited about it. But the challenges really, the technical challenges are all solvable. I mean, really the solutions are out there for the bits and pieces. It's bringing it together as a whole solution, which is hard and that's down to trust and people and engaging with people to bring out the sufficient value that they're able to prepare to take that step to go through the processes we need to go through to the share data safely and implementing any software anywhere is a, is an expensive challenge for an organisation.
When you have to influence it across several organisations, it becomes that much harder. But once we really get the ball rolling, this is all highly possible and it becomes it's a rolling stone. It will, it will gather pace as it goes downhill. When I was working with the UK, renal registry, well, actually I still do some work with them, but I'll pretty much stop that now.
But we take renal data from 70 different UK, renal organisations into a central data repository. And that happens slowly at first. But once you get the first few organisations to send that data in and become more trusting with the system, then barriers drop, barriers fall away because, hey, we can see this happening. We can see the benefits of it happening.
And all of a sudden, some of those barriers can fall away. I think it's happened a lot faster. Unfortunately, we've got many barriers to overcome because we can share a subset of data now, pretty much now, across some organisations. We really need to link into the HRs to get the data for the donor from the source.
We need to feed into donor. In fact, the whole infrastructure from donor, HR to transplant sensor, HR and donor net seems needs to be seen as one thing. It literally is or isn't, it's irrelevant. So the people using the system, that needs to be a single information source and it needs to flow seamlessly and quickly.
And that can happen. It's bringing all those people together. Everybody knows how it is doing it's great with an HR. And again, I'll just reiterate that isn't technical.
That's getting the people who own, who are in charge of information governance and artificial tools to let go. They're after very easy to take data labs or any other patient data. All the HRs are in it. They're allowed for you to be taken.
So this is all doable technically, but building it into the full system that we need to provide is going to be challenging. But we're starting with a very useful central piece of that question and we can dream as to how big this can get. I love the imagination that you guys have in the foresight that, you know, because I was thinking, you know, as I think of it, it's got boundaries. And you saw, you see a larger scale for this that if it's in it, like you said, it's something that can be done to be able to, what I'm visioning, you know, is to be able to have this application that automatically taps into the health records of a patient.
And then you can upload it here. You can view it here. And we can share that seamlessly with, you know, those who make decisions on the transplant side. The amount of time, and I know I've said it a couple of times, but the amount of time that this would save and the amount of the increased amount of lives that it would save, I can't even imagine it's even difficult for me to even put a perspective on it, how much impact that's going to be.
Right. And particularly for you, you know, your son was part of that process, part of that transplantation process. So how's he doing? How's Matthew doing?
He's doing really well. He's, where are we now here? Eight, nine, sorry, I can't count. 21 months post-transpont.
And he's becoming a much more normal 19 year old boy, which means he can be a pain in the backside. So normal. So normal, yes. He is in every way he's grown so much.
He's physically grown. He's matured as a person. He's bulked up from when he was a renal patient. He was, you know, as he's very tickly, he was skinny and not so well developed.
But with time, but particularly with the transplant, he's grown physically. He's grown to a much more confident person and socially he's grown a lot as well, although now it's not great time for that. He's in college now in community college and he's looking to move out to a shared flat sometime the next few months, which is very scary from him. Oh.
It would be anyway, but with COVID around it, it's really scary. But that's a great sign of his growth. Right. And he's doing fantastic as well.
He's sleeping way too much. Who isn't? Nick. Okay.
Just think about these huge moves and these huge decisions by the family and all because you love your family. You want to keep them together. So when you reflect on that, when you look back like, Oh my gosh, over the last couple of years, look at the steps we've taken. What do you think about this journey?
Well, it was frankly crazy. We decided October, end of October 16, we wanted to come to the States in March 17. We were here. We kind of jumped out of the plane and built the parachute as we came there.
But it's all, you know, it's all turning out very well for the best. We became permanent residents two weeks ago. So we've kind of completed that landing. That's been a long journey, but we've achieved that.
Matty's in college now. He's post-transplant. He's non-recurrent with his original disease. So once we're watching the drug trials with a lot of interest, we don't need to worry about them too closely just yet.
And I'd also, who was 18 when we came across, I'll be honest, a little bit lost for a while. It is now in a long-term relationship and it's just had her first child. Oh, congrats. So many things are coming together.
I'm going to tell you. Oh, I love that. I love your story. And I love that you take the time to share it.
I know folks will want to look up the company that you're with. It's GetAlmELife.com. GetAlmELife.com. And Nick, we hope that you continue to check in with the Gift of Life and let us know about these advances.
I was getting nervous because Joey was excited about what's to come and what's possible in your vision. And so we just appreciate that. Well, thank you very much for calling. All right.
Thank you for joining us here on the Gift of Life. Taking a moment for our mental health here on the Gift of Life. Yeah, what are we going to talk about today, Miss Sarah? All right.
So who's stressed right now? Hey, everyone who's not. Yeah. That's exactly my point.
We're all very stressed out. The global pandemic going on, it's an election year in America. And there's a lot of social unrest. So it's a very stressful time, right?
Right. So how do we combat that? We're going to build some resilience today. So what is resilience?
Resilience is our ability to recover from stress quickly. So that's the main point is quickly. Since we all have a lot of stress in our life, we need these skills. We need to be able to bounce back.
And that's really what resilience means. It's bouncing back. So mine usually starts at about 5.30 to 6 with a whiskey drink that's immediately stressed. Is that a PMF?
So that's a coping skill. Okay. We're talking about resilience. Shut it's again.
So the main thing about resilience to know is that it can be built on and it can be strengthened. Some people do have this innate ability to bounce back and to be resilient. But it's something you can learn and it's something that you can grow. So that's the main thing.
You hear a lot of people that are so strong. You have to work at it, right? You have to work on your ability to cope with stress. So let's learn two ways to do that.
So the first thing you can do is increase your positive emotions. That sounds kind of obvious, right? And it's easier said than done. But really what I want to focus on is increasing your access to things that are positive.
So media can be difficult and social media particularly can be difficult. So increase your access to that content that's feel good. So those authentic people, those up worthy accounts, stuff like that, because it really does make you feel better. And those positive things, they really help and they increase your ability to look at the world in a positive way.
Or I just put the phone down. I just put the phone down. Well, that's the second component is decreasing your access to negative content. So putting the phone down, turning off the news for a minute, putting on a feel good show, like I'm going to park some wreck, you know, something like that, that's a feel good.
It will increase your positive emotions. I'll rewatch some of the LSU games from last year. That was so exciting. Go Tigers.
One of those things that I'll do. But one of the other things really, I noticed myself quite often listening and watching media, whether it's social media or mass media, that's so much less. Because everything on it right now, to me feels like it's negative. And they put the little one minute clip at the end, a little feel good thing, but there are other not two and nine minutes.
It's stressful. It is. On top of everything else, you know, going on. The glass of wine watching, you know, the news from five to six, I'll go sit outside, you know, watch ducks and things like that.
And it makes you feel good. It increases this positive, which will increase your resilience too. You know, stress. So we know that stress is going to happen regardless that we live in a stressful world.
It's a stressful time. But if we increase our access to things that make you feel good, it'll help increase your resilience. So that's the first part. The second little scale I want to talk about is positive reframing of stressors.
So we have ways to deal with stress and then we have ways we think about stress. So one example could be you're driving on the way to work in their traffic. You can get really upset and really stressed out really fast. Challenge yourself to reframe that stressor as this is a good time for me to reflect right now.
I have 30 minutes on my own. You can turn the radio off and just be with yourself. Reframing the way you think about things that stress you out will help you deal with it better. This week I had to say just smile.
Like just try smiling. We're going to turn this around. And then with the social distance, I'm having trouble with that. And I'm a smile, right?
So you'll know like, hey, I'm friendly. Yeah, I hope you have a good day. And then I have the mask on. Yeah.
Sound like this is more stressful now. You can smile with your eyes. People recognize it. But yeah, right, I know.
But trying and I like to jam out in the car. That's my car down. Yeah. Well, and that reframes for you and your brain that reframes that stressor of this is a stressful time.
And I have right now to do something that makes me feel good or to listen to a good music. A really good tip is when something is stressing you out. Think how big of a deal will this be in an hour and a day and a week. So if you're in the car and there's jam-packed traffic, how big of a deal would this be in an hour?
Not a big deal because you're where you need to be, right? It's a good way to reframe that stress. I don't know why I use six, but I use six hours, six days, six months of six years. That's like if I have some issue, I think, okay, is this going to be an issue?
Yes, it's still going to be an issue in six hours or six days. I won't feel as passionately about it, maybe. Yeah. This too shall pass.
So you're already doing it. You're reframing the stressful things and it'll help you cope and stress. And that's really what resilience is. It's bouncing back.
I like it. We all could use that lesson, huh? Maybe you have a topic you want Ms. Sarah to cover info at the gifted life.org.
We'd love to hear from you. Since this episode is all about technology and organ donation and transplantation, we've got a question that's very closely related. And this one's for you, Laurie. This one comes from a listener.
Are there any apps that allow you to sign up to be an organ or a tissue donor? There's an app for that. Is there? Oh, I was hoping to say that.
There's an app for that. So if you have an iPhone, I know our Android friends are like, oh, where's mine? Not yet, but it's coming, right? But on your iPhone, you go to the health app.
So on mine, it's just a white square with a little red heart on there, which in Louisiana, we get a little red heart. If you sign up to be a donor. So I like that. Under the summary, if you scroll down to the bottom, you'll see where you can register as an organ, tissue, and eye donor through donate life.
So it goes to our national registry, which is registerme.org. So if you don't have an iPhone, if you're an Android friend, which is okay, we still like you, Kirsten, I'm talking to you. She's a producer or a podcast, but registerme.org. You can go there and sign up.
It's a quick process. And you're just saying that you want to help make life happen if you can. So we appreciate the question. It's easy.
It takes two seconds on the iPhone. I went through it again just to make sure. But I like the question and I hope that you register today. Yeah, I've done it.
It's really easy and quick. So if we can do it, it's a quick process. Exactly. Great question.
If you'll have a question for us, give us a call at 504-648-3477. In every episode of the Get to Life podcast, we honor a hero. Today's hero is Kai Law. We learn about Kai Law from his parents.
This is our son, Kai Marshall Law. He will forever be two years old. He passed away in March of 2019 and the loss of our son has been very, very hard. It was sudden and a true tragedy.
I share my son's story in a lot of ways. Kai has helped so many people and saved so many lives already. Kai passed away due to an accidental drowning. In memory of him, we created a foundation called Swim for Kai.
We raised money in our community by stressing the importance of water safety. We have fundraisers that help us do this. We were able to donate $7,000 to a local gym in our area and 47 children received free swim lessons. Not only is Kai helping save lives in this way, but my husband and I decided to help in another way.
We donated what we could of Kai's organs, his heart valves and both his corneas. I received a letter about three weeks after Kai's passing that two people were given sight again through Kai's corneas. I know one isn't eight-year-old and the other's a 20-year-old female that we hope to meet one day. I miss my son beyond words.
It hurts every day, but I know my heart would feel so happy if I could just hug you, whoever you are. You are seeing through my son's eyes and that has been the greatest gift in the world. I know our little boy is going to keep living on through us and everyone he touches through donation. Thank you.
Kai's mommy and daddy. At this time we pause and say thank you to Kai for the gift of life. The gift of life, episode 146 in the books. Thank you so much for listening.
Remember, tell your friends, you can find us at thegiftedlife.org. Thanks to Nick Jones for coming on. Of course, you've got a battle of the two greatest accents in the world, Cajun and in English. After Australian and Jamaica, they are just, you know, but for sharing his story and of course, Maddie's story.
And of course, him becoming more involved in the donation process, helping us to tackle some of those challenges that we see day to day. I'm curious to see what he's got in store next. Oh, yeah. I'm excited, right?
What's happening tomorrow? I love it. I think he's going to be on the forefront. Hopefully we inspired you to register as an organ tissue and eye donor.
Remember, you can do that anytime. Register me. That'll work. And you can listen to us anywhere you like to listen to your podcast, whether it's Apple, Google or Spotify.
If you do listen on Apple, go ahead and subscribe and leave us a five star rating. It really helps others find our podcast. And thank you for listening again. Please spread the word.
We're one big team and we hope that you go out and do something you would normally do to help us make life happen. It all counts. Have a great one. This is a production of Loba, or the Louisiana Organ Procurement Agency.
The Get to Life is hosted by Lori Steele, Joey Buudro, and Sarah Blakemore, our executive producer is Kirsten Heins, producer Isha Long-Caraway. Intern is Rebecca Rannam, and we are recorded, engineered and mixed in our Covington, Louisiana studio by Troy Perez.