Symptomatic: A Medical Mystery PodcastJust when Trent starts to believe the worst is behind him, an unexpected twist turns his world upside down. He’s forced to confront new challenges that test his resilience and make decisions that could change the course of life for him and his family forever.
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Really previously on symptomatic. Trent Fielder, a successful and vibrant insurance assessor, suddenly faced a life threatening battle out of nowhere. He began losing feeling in his arms and legs. The condition spread quickly, leaving him wheelchair bound with no sensation below the waist. Things worsened rapidly when his lungs began to fail, landing him in the ICU with a daunting diagnosis, gyond Beret syndrome GBS, an autoimmune disorder that attacks the nervous system.
I was overwhelmed. I could not get my heart to slow down. The only things that I could think about were the negative things. My focus was on what I lost. You know, it was am I going to be able to go back to what I used to do? Not like this? But it was very much wrapped up in the I can't do this anymore.
They said that this was progressive and that he wasn't going to make it. How do you process that?
Even though Trent stabilized enough to return home to his wife, Nicole and their young twins, the doctors couldn't restore much of the mobility or feeling he'd lost overnight, despite trying every treatment protocol. Then out of nowhere, another flare struck, landing him back in the er fighting for his life.
The pain was immense. The spasticity was just out of control. The spasitos were so bad. At some point in my neck my neck would try to snap itself. I couldn't keep it in control. My jaw would pop. It was very painful. So as the pain continued, the depression kicks in. The beer kicks in.
With his symptoms lingering longer than expected, Trent received a new diagnosis, Chronic inflammatory demyelinating polyneuropathy CIDP, a progressive autoimmune disease causing long term muscle weakness and fatigue. After exhausting treatment options with little improvement to his mobility, Trent made the tough decision to try a suggested spinal surgery, but unfortunately the outcomes were more devastating than hopeful.
So in the surgery there were some decisions made by the surgeon that went against protocol for what you would do with that implant, and he ended up cutting into my t ten vertebra.
How terrifying would it be to fight an unknown enemy, one you didn't recognize and didn't see coming what if that enemy was coming from within a disease that even doctors couldn't identify. Nearly half of all Americans suffered from some chronic illness, and many struggle for an accurate diagnosis. These are their stories, and Lauren write the CHECKO and this is symptomatic. Before we pick up with Trent's story, a quick warning. This episode mentions thoughts of suicide. Please proceed with care. Two years after Trent's symptoms first began, he was dealing with the aftermath of a failed spinal surgery meant to be a last ditch effort to restore some mobility. Through the darkest moments, Trent drew strength from his family, including his loyal service dog, Gunner, who never left his side. With his t ten vertebrae severed, he faced the risk of being paralyzed from the waist down forever.
It wasn't until January twenty third, two thousand four where I realized just how bad of a mistake he had made. And that was when I ended up having two embolisms back to back. And I was at home at the time for the first one at least, but I realized at the time I had a full breath in, and with that full breath, I heard a calm, very peaceful voice that said not yet. And immediately I became aware of the fact that, Okay, I'm about to go through something, but I'm not going to do it alone, and I'm going to be okay.
Wow.
But I had a full breath then, and I realized that that was my last breath. I've had the opportunity to talk to people about what that last breath looks like. And it was like seeing the world through a stained glass window. It was absolutely remarkable. And when Nicole again Nicole is stunningly gorgeous, but when she came in the room for me to show her my phone, she was listening. You know. It was kind of like seeing the ocean off the sunrise. And so Nicole came in and I had my phone and I'd put on there I cannot breathe, Please stay call nine one one. She did two of the three, the staying calm parts. She can't of skipped that part. She went into full action. We had just put the babies to bed, so she called nine one one.
I got like really nervous, and thank god, the ambulance had like a bogus phone call kind of nearby, because they were at the house fairly quickly, and they got.
To us within two minutes.
Wow that I mean that in the voice that sounds like divine intervention.
Yeah, there were a lot of things that had to happen and they can't all be circumstanced and for me to be able to calmly get through that time. So they got there right as I was finishing that last breath. They gave me a shot of something in my neck and then started taking me to the hospital. And at that point Nicole broken down. So she came over to the aim and you know, she sees tubes and everything else, and it was more than she had ever seen before. But I reached over and grabbed her hand and I said, we're not going anywhere. It's going to be okay. I was told it was going to be okay, So it's gonna be okay. Then I got to the hospital and the second one happened, and you flatlined a flat line, and I wasn't gone very long.
Due to its inflammatory nature and the resulting lack of mobility, CIDP presents a higher risk for blood clotting issues like embolisms. After everything Trent had been through. He and his family faced his most severe reaction yet, pushing him to the edge of death.
And so I woke up being angry. I didn't really know what I was angry at, but I wasn't angry because of the condition. I wasn't angry at a doctor or anything in particular. They put me in the ICU and I was in there for a lot long time. This is probably a few days into it. I was down to about eighteen percent of my lungs. I could really just barely breathe on my own.
That was kind of scary, and it's kind of like, well, if you're a lung scamp function I can put two or two together. That means you can't breathe, and then if you can't breathe, you're not going to be living.
And there were these three doctors that came in. They are the ones that looked me over while I was in there, and they sat down and they said they needed to talk to me, and you know, that's never a good starting point to a conversation when it's a doctor. And they said, there's not anything more that we can do for you. So there's nothing more we can do to reverse the effects, sort of make this better. So they had come to a conclusion that they were going to send me home and that they would set me up on hospice at home.
His doctors were all telling him that he was going to die. What kind of patient wants to hear that? That's crazy and nobody can predict the future, and he was like, I have too much to live for. He's just like, get on board or get out of here.
Being sent home for hospice, Trent refused to accept that this was the end of his fate. However, having deteriorated so much physically, proving the doctor's wrong would not come without its challenges. So on top of all the health issues, what was your greatest fear at that point?
That he would have killed himself and then I would like walk into a body in blood on the floor. That crazy, but yeah, I've thought of that once and twice.
My doctor was right. I was not prepared for the flood of emotions, and you know, it was like seeing the events that had happened to me, like America around It was just and I couldn't make it stop. And so there were times when the emotions were really too overwhelming and there was one particular time where I'd considered an almost carried out, taking my own life back home.
Trent sank into the depths of his desperation, but it would be his faithful service dog, Gunner, who would prove that there was a reason for hope.
I planned it enough out where no family was going to be around, nobody was going to be around me. I'd be able to just cut the story short. Essentially, there was a gun that was next to me and a bag, and I reached over to grab the gun and it wasn't there anymore. And I looked back and Gunner had He had jumped up on the bed where I couldn't hear him, and he had crawled to it and took it away. And I looked right at him, and he had it in his mouth. There was no risk or anything to him, but he never lost eye contact with me. He constantly looked at me while he had this in there. His tail was not wagging. It wasn't a game to him. He knew that this didn't fit. So I tried to reach back further for him, and he took steps back. And I tried to reach further back, and he'd take steps back but never lost that contact. He just kept backing up. And I eventually reached a point where I was just exhausted mentally and physically, and I just fell down to the ground. And at that point I was crying, and he knew that that was what needed to happen, and he came up to me and nestled up against me, and he never left me. They just stayed right there.
What a beautiful story. Trend's condition had reached its lowest point, with his lung capacity now at life threatening levels and no treatment options left to counter the degeneration. He knew he needed a fresh perspective from a new medical team. If things were going to get better, it would be up to him to dig deep and find a strength he hadn't found before.
I think that the anger of allowing a disease to take control of my mindset, to take control of my heart, my future as a husband, as a father, as a friend of a son, that was where I was like, I've allowed it to control me for too long, and so that has to stop.
We'll be right back with Symptomatic, a Medical Mystery Podcast. Now back to Symptomatic a Medical Mystery Podcast. Trent had followed all the doctor's orders, trying every possible medicine and physical therapy approach, but only seeing temporary relief and minor recovery from his pain and partial paralysis. After a failed spinal surgery and two embolisms that caused him to flatline, Trent still refused to accept defeat and was determined to find a path to recovery. This turning point started with the guidance and support of his mother's primary care physician, who helped carve out a possible treatment plan, paving the way for a different approach to physical therapy.
She is an incredible woman. She is an amazing heart, a giving person. She has gone far and above what I thought any other doctor would do to help me. She's coordinated my care. You know, she's kept the other doctors honest, I guess, is what I would say. So she's kept him in line to make sure that everybody is talking and on the same page about my care. When you think of an advocate patient advocate, she is absolutely at the top of the list of the best ones out there, and that never so that's exactly who she is and who she'll always be. It is just it's just her heart.
First on Trend's list was rebuilding his lung capacity. To do that, he turned to an unexpected life saving tool music. It helped him retrain his lungs and find his breathing rhythm. It also gave him a way to block out everything else going on around him.
Music had always been very important to me and helped me get through some difficult times in my life. And I realized that I can use that music to retrain my lungs on a gradual basis to make them stronger.
So you decided, I'm not accepting this and that's not the way it's going to be. I'm going to train myself to breathe again. I'm going to train myself period. So what does that process look like and what kind of advances do you start seeing?
As I grew stronger in that, I was developing these kind of mental programming to find out the best ways to rehabilitate what I could rehabilitate my side, what I had control over, whether I thought about it at the time, I was empowering myself to improve and take control again of the situation that was completely spiraling out of control. So I focused on that. So the pain is still there by using the music to guide my way through the pain, to breathe and to cope and function at a higher level.
Trent worked diligently to increase his lung capacity to thirty one percent, a significant step forward, but he didn't stop there. He was already focusing on his next physical therapy goal, setting the bar even higher. That mindset of always pushing for more has been a constant in his recovery.
Decision that I wanted to go beyond just functioning. I wanted to excel and how am I going to do that with a body that's attacking itself. I'm fortunate that I follow kind of both sides of the traditional medicine has been very supportive, but I push it to its limits with what I do. Because I decided to go through a program which is the Adaptive Training Foundation, and I was invited to be a part of their class with a number of people that are a lot of wounded vets and first responders, people that have had traumatic injuries that they've gone through or been born with certain conditions. And it was such an incredible blessing to be given that opportunity.
After he went to ATF, because you know, he had friends but he didn't really have like a good set of people around him and stuff, and so he calls them his tribe and they have like a whole big tribe mentality of this is your people, we got your back, and so that was really the turning point for him.
At the Adoptive Training Foundation or atf Trent found a supportive community of people facing similar challenges and working through their own recoveries. It was there he met his new trainer, Sean Fitzmorris, who would play a crucial role in helping him take the next steps in his recovery.
A lot of doctors, they are dealers of reality and what science has shown them, our studies have shown them, and they just rely on those soul things. And I think that doctors do not want to be responsible for if they were to say, hey, yes you'll walk again, or hey, yes you're going to get this back and you're going to be able to do these things in life, because I don't think they want to over promise things to them, you know. I think they want to be as real as possible, which I think it can work both ways, right, So they need to face the reality and really looking in the eye and say this is my truth right now. But my thing is that your truth in a moment, maybe at that time, but it's not your truth for your entire future. You're going to create your own path, You're going to create your own truth. You're going to create your own destiny with your own unique abilities.
We all meet people that are able to bring things out in us and help show things in us that make us stronger. Jean, he has that ability to bring things out on you in the moment when you need it most, when you're about ready to quit, right when you're exhausted and think you can't do one more thing, Sean finds a way to get under your skin so that you're going to persevere through it.
Still paralyzed from the waist down, Trent had been searching for someone to help him believe there was more to his life and mobility than what he'd come to accept over the past few years. Sean stepped in and began showing him the possibilities, but they both knew they had to start with the small things first. Did he have any specific goal or did you you have an initial goal for him when you first started to work together.
Well, his goal he wanted to walk.
He had had some sea braces made that provided like an electrical impulse when he walked, to get that feedback through his legs. But he wanted to be able to walk without the braces. And the thing is with the braces too, it creates atrophies. So then those muscles really aren't firing on their own. You know, they've got so much stability and support from the braces that they can't do the job they need to do.
So the brace has become a crutch.
Literally, they become a crutch.
Literally.
He was like a baby deer, but even like a baby deer in a frozen pond, and we stayed very very close to him. He was just the fear of following. His legs were super atropheed but also super weak. They weren't stable. But we started with foundational movements, a lot of things. You know, you can't just go right from being in a wheelchair to now, let's stand up and walk. There's so many more things we had to work on, just ground based stuff, you know, getting them all fours, getting even quadruped, working on his core, working on a lot of the small things, working on crawling, working on balance. A lot of times people get so focused on the end goal, and they get frustrated with the small things we need to do along the way to get them there.
More than five years after his sudden paralysis, Trent finally found a like minded community and an approach that began to show real progress. By shifting his mindset beyond his original prognosis and finding the right support system to guide his training, he was determined to meet his goal of walking again.
We figured out how to get me up on my feet and doing it very unconventionally with golf balls, PBC, pipe and cape. We kind of out scienced the science because I couldn't feel my legs. It's like, okay, well your legs are basically shock ofs orbers for your spine, and so I needed to find a way to take how the shot dissipates, and I needed not to dissipate. I needed to go up to my hips where I could feel. We're just trapping all this stuff together. I mean, it was kind of a guyver for rehabilitation.
So they're kind of like bracing him and then he asks like crutches, and I'm just walking home, kind of amazed that he's using the crutches. He's upright, he's walking forward.
I was taking not big steps, smaller steps, but I was making sure that my feet would pound on the ground as best I could. But I could feel my hips. It's like a pattern, and I could follow. And I reached the end of the street and then turned around and Fitz was there, and Ari was one of my other trainers. Since she was there, I can't hear anything that they're saying because I have the headphones on and the music going. I have no concept of how loud I am. And as we start going back, I was just like, you know what, I'm gonna fall. I'm gonna fall. So I dropped one of.
The crutches and then he like, he goes ahead and he drops the other crutch and just kind of like, what is this guy doing?
So again, I can't feel my legs. I've got no appropriate perception, so I have to look down. I have to look at my legs, and that's what I was doing. And there, I guess it is screaming at me essentially in the background, and I can't hear anything.
And then he pushes his trainers away and then he freaking takes steps and walks towards me and gives me a great big hug. You know, Like I said, he is one determined son of a gun. Do you tell him now, He's going to be like, oh yeah, you just wait.
And I think it was probably another twelve or thirteen steps before I realized and I looked at him. Shawn's just right there.
And you know, it's kind of like forced up when he starts running. His braces are flat off.
And he just said, you're doing it, man, You're doing it. You're doing it. And I read his lips and I looked at it and I just fell apart. I just collapsed, and he caught me and I'd done it, and there were people well to celebrate the whole thing. I just cried.
It was a very emotional moment looking on and it's still you get the happy tears going when you see it. It was a powerful moment and it's just a huge milestone for him to reach on that day.
Oh gosh, five years, ten months, twenty five days, and five and a half hours, I'm never going to forget that minute.
You talked about he had lost his purpose for a period of time, and you'd said that life for a while was kind of like a shit show, and so would you say that once he found atf he found a new purpose.
I think I think he was surrounded by a lot of people who encouraged him. And it's so easy to say you can't do this, or you won't do this, or this is never going to happen, and it's like, if you hear it so often, even if it's not the truth, that becomes the truth. So when you have people speaking positivity into your life, saying, hey, it doesn't matter X, Y or Z, you can do this, you can fight, you can push.
So I just think that was just a really.
Good group of people to continually speak positivity and to kind of get him in the right mindset to make positive changes and believe in himself and keep on going from there.
In typical Trent fashion, just walking wasn't enough. With a renewed sense of hope, he set his sights on an even bigger goal, completing a half iron Man. While his training team suggested waiting twelve to eighteen months, Trent had other plans. He signed up for the first race he could find just a few months away. So, for those not familiar, tell me what a half iron man intail?
Else, half iron man is a seventy point three mile distance, which is one point two miles swim, it's a fifty six mile bike, and then a thirteen point one mile run, or in my case at the time, it was a racing chair. That makes up for the fact because I couldn't run, and I did pretty well in the swim. On the bike, I was seventeen miles in. It's a very interesting picture contrast at miles sixteen, I'm like on top of the world. Mile seventeen you could see it runt in my face because I had actually torn both my rotator cuffs and.
Biceps before you even get to the running chair.
Right before I give the runna chair, before I was even a third of the way through the bike.
How did you keep going?
I think one of the most important things of life, in this case, certainly, but in every case, is to know your why. And when you know your why in life, then you really become a force of nature. You can be unstoppable. And I knew why I was there. There was no way that I could quit, no matter how much it hurt, because the bike is a hand cycle, so I'm using my arms the whole time. But I had to be able to keep going because I was doing it for Hope. I made it to the very end, about point two miles out, and that was when I felt the calling. And it was when I heard the voice was the rise and walk. I'm like, oh, I was like, are you sure, God, because I could just coast him. But I ended up getting up. I gets some help and I was able to not just walk across the finish line. I had a small jog.
He said he heard God tell him get up, and so he physically got up out of that thing, and then he ended up walking and then running the last like tenth of a mile.
And I did it. I had my headphones on, I was looking straight down the whole time. I collapsed as soon as I got across the finish.
Line, and everybody was like what this paralyzed too.
Just got up and ran across the finish line and my dad caught him and our friend Adam, and it was pretty amazing.
And then in the video and Abia's like, go.
Daddy go, go Daddy go, and.
It started something. People were videoing it and posting it and sharing it because they just couldn't believe what they were seeing. And probably about thirty five forty minutes from the time I got my medal to getting to the car. By the time I got to the car, I had almost eleven hundred messages on Facebook, and I had probably about half that in friend requests, and the majority of them being vets and first responders and people just needing hope. And it just continued to grow. And that's how I spent the last years doing what I'm doing, never doing it for myself. This can't ever be about me. If it is, i'd find a reason to quit. And the mission has always been hope. So I've done half iron Man, iron Man, I've done USA Triathlon, I've won national championships that way.
Trent has since completed multiple endurance events, including representing Team USA as the only para athlete in last Summer's Triathlon World Championships in Australia. He doesn't push himself for accolades or medals which he gives away to others. He does it to physically pass on his message of hope wherever he goes. His loving kids, Logan and Nevayah understand this more than anyone. Why is your dad different from other dads?
He has been paralyzed from the waist down for a long time, and that he wants to give people hope and he runs iron Man's and gives his metals away to other people.
What are you most proud of when you think of your dad?
Probably him being able to do all these things while having treatments and surgeries and taking care of stuff around the house as well, like being able to do iron mans and all these races, and like still being able to be there for us, like as a dad. You know, him being able to walk after people told him he wouldn't be able to is like probably the most aspiring thing.
And Nicole, what do you hope people take away from hearing Trent's story?
Hopelessness is such a disease, and it's kind of like, if you don't have hope, what do you have? Whatever the situation is, there's always light at the end of the tunnel, regardless of how dark it may seem.
Now, if people can understand that, there are going to be moments in our life that generate suffering, but the question is what do we do with it? What are we able to do with it? If it's too difficult or it feels too overbearing to make a change in our life, then do it a different way by making a change in somebody else's, by impacting somebody else's. And I could have never imagined the things that have occurred with me. I mean, how can I imagine going from the guy to flatlines on a table to a go medalist in ten years? And people constantly they'll ask you, Rocker, what did it feel like to hold the metal? I'm like, the metal is not the message. Help is the message. And I think that's what I would like people to best understand, whether it's through this podcast or through my life, is that no matter what, and no matter how long of a road that it took, I chose hope, and I choose that for everybody.
Always looking to pay it forward. Trent gave his gold medal from this Summer's Triathlon World Championships to his wife, Nicole, who has been his steadfast supporter from the beginning. You can also be a part of his message of hope and keep up with his next adventure at Trentfielder dot com. Special thanks to Chive Charities for the work they do with veterans and those living with rare diseases and the impact they've had on Trent's story. If you know someone who might benefit from hearing his story or other stories in this season of Symptomatic, we encourage you to share it with them. And knowing that health struggles can often be a marathon instead of a sprint, if you want to help others cross the finish line, consider paying it forward like Trent has by donating to his nonprofit at Trhope dot org. That's trii Hope dot org or Chive Charities at chive Charities dot org.
My name is Trent Fielder. I was diagnosed with Giambore syndrome in twenty eleven and in twenty twelve I was diagnosed with chronic inflammatory demolinating polyueropathy. I went from flat lining on an emergency room table to eventually working to train myself how to breathe, how to walk. Eventually took on a mission to compete, and that competition led me from flat line to finish line. And that finish line was gold medal at the World Championships this past year with Team USA.
As we close out the season of Symptomatic, we want to take a moment and say thank you to all our dedicated listeners. We've had the privilege of telling some very special stories this year, from a doctor turned rare disease patient and cutting edge cancer care to every story of determination this season. It's been so heartwarming seeing your reactions and humbling being able to share your stories. So if you have a medical mystery, don't hesitate to reach out to us. It's Symptomatic at iHeartMedia dot com and now, for the first time, you can also leave us a voicemail by using the link at the end of the show notes who knows you or someone you know could be at the center of the next episode or spark thoughtful conversation in an upcoming house calls. Until next time, be Well. Symptomatic is a production of Ruby Studio from iHeartMedia. Our show is hosted by me Lauren breg Pacheco. Executive producers are Matt Rema and myself. Our EP of Post production is James Foster. Our supervising producer is Cierra Kaiser. Our writers are John Irwin and Diana Davis, and our editor is Sierra Spreen, with additional help from Matt Stillo.
