← Symptomatic: A Medical Mystery Podcast
Loading summary
Transcript93 lines
- [00:03]
Lauren Wright Pacheco
Ruby.
- [00:09]
Trent Fielder
I couldn't move my arms the way I needed to. My head was kind of like a bobblehead. I couldn't really control the muscles on my neck. He reminded me of kind of like a baby deer. The inability to control the balance, proprioception, the coordination, all the things in his lower body just wasn't there.
- [00:25]
Nicole Fielder
And they told us when he first got sick that I would be a widow in about two months because whatever he had was progressive. How do you process that?
- [00:36]
Trent Fielder
And I just, I was helpless. I was completely helpless. Now she's got these brand new babies at home that need their father and she needs her husband.
- [00:53]
Lauren Wright Pacheco
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 suffer from some chronic illness and many struggle for an accurate diagnosis. These are their stories. I'm Lauren Wright Pacheco and this is is symptomatic. Trent Fielder, a seasoned insurance appraiser with a knack for problem solving, centers his life around his family, deep rooted faith and his service dog, Gunner, a loyal Labrador retriever. Dedicated and genuine, Trent is the kind of person you'd want in your corner, both at work and in life.
- [01:56]
Trent Fielder
The majority of my job was spent out in the field, so I was driving around, up and down the coast of Florida. That was, you know, basically my job.
- [02:03]
Lauren Wright Pacheco
What did you do?
- [02:05]
Trent Fielder
I supervised auto appraisers for an insurance company. So I had the best job ever. I loved it.
- [02:11]
Lauren Wright Pacheco
After the loss of his first wife, Trent experienced a roller coaster of emotions during this difficult time. His mom and sister stepped up to support him.
- [02:22]
Trent Fielder
I had a discussion with my mom, who's still in Texas, and told her, I said, look, I think I don't want to go down this road again. Suddenly, the next morning, my sister had shown up, you know, and I knew exactly what was going on. So we talked throughout the day and I had work and did our thing. But the next morning I needed to take her back to the airport and so we went to breakfast.
- [02:42]
Lauren Wright Pacheco
That's when Nicole entered the picture.
- [02:45]
Nicole Fielder
It was a breakfast place called the First Watch and it was super fast paced place. You had your regulars and you knew their names and their faces, but everybody else, they were just in and out so quickly.
- [02:57]
Trent Fielder
And as we were sitting there at breakfast and talking about concerns that my mother had and concerns that other people would have, as I was sitting there, the server came up and she asked us if we'd had a chance to look at anything, and that, obviously, was Nicole. And I looked up at her and lost my train of thought and lost my ability to speak, and that's not me. So when she walked away, my sister just looked at me and she just said, you've never done that before. And I was like, done what? She said she completely. She floored you. You lost your train of thought. You couldn't say anything. I was like, let's just get back to what we're talking about.
- [03:35]
Nicole Fielder
And, you know, I was just doing my job and waiting tables, and then all of a sudden, the woman came back into the kitchen, and I was like, hi. She goes, the food was wonderful. The service was excellent, and my brother thinks you're cute. And I was like, brother? I was like, okay. And she gave me his business card. And then a couple days later, I was doing laundry and just going through my pockets, and I found his business card. And then I was like, you know what? Life's too short. I'm going to email him. And so I emailed him. This is my name, and this is who I am. So if you want, call me.
- [04:08]
Lauren Wright Pacheco
What was it about her once you got to know her, that made you realize you were going to break that vow you made to not get married again?
- [04:18]
Trent Fielder
Nicole has, and she'll deny it all the time, but she has a natural light about her that is undeniable. And it's fun to introduce her to additional people or to watch her kind of in her element and see how people respond naturally to her. They naturally want to open up to her. They naturally feel better, no matter what their circumstances are.
- [04:42]
Lauren Wright Pacheco
And for people who don't know Trent, how would you describe him?
- [04:46]
Nicole Fielder
He's just one tough son of a gun. And, you know, it's like, don't tell him he can't, because he's going to. And he will do it, maybe just to spite you. He's very tenacious.
- [04:59]
Lauren Wright Pacheco
That tenacity set the stage for the battles Trent would face ahead. After a whirlwind romance and wedding, the couple discovered they were expecting twins. However, complications arose in the womb when their daughter Nevaeh began taking nutrients from her brother Logan, putting both at risk.
- [05:21]
Trent Fielder
It became very dangerous. So, I mean, we went from the joyous moving along the process to suddenly realizing something was wrong, and it kicked in everything into overdrive. And from the moment of our first, I guess, realization of something was wrong, within two weeks, the doctors came in and said, we have to take them. We have to take them now. Logan Was a great risk, and avaya was as well. And if things didn't go right, then the risk was Nicole. And I just had to button up and pray but keep her excited and energized that, you know, you're going to be mom.
- [05:58]
Lauren Wright Pacheco
Logan was born weighing just 2 pounds, 5 ounces, and nevih at 3 pounds, 11 ounces. Both babies spent their first few months in the NICU fighting to grow stronger. A stressful start for the new family. At the time you started exhibiting symptoms.
- [06:17]
Trent Fielder
The symptoms actually came months later, but they started piling. I mean, I was definitely. I was wearing down my body. I was wearing down emotionally and spiritually fast Because Logan was in the hospital for about almost three months, and he had multiple times where there was a possibility that he wouldn't make it. You know, they took us into that room that's in a hospital or a room that's in the nicu that no parent ever wants to go into and are telling us that your son is dying. It was a lot to handle, and Nicole's very strong, but at the same time, I had to be stronger.
- [06:56]
Lauren Wright Pacheco
And at this point, you began to experience symptoms you couldn't quite explain. Take me back to that moment.
- [07:05]
Trent Fielder
The first ones, they were very obvious to me. I guess they didn't make sense, but I. At the same time, I was justifying why they were happening. December 16, 2011, was the day that everything went south for good. I was actually underneath a car and was trying to work an estimate on a vehicle. I'll never forget the vehicle either. Toyota, Camry, gray. And at a body shop that wasn't very friendly. And while I was under there, after I was done, I was trying to get out from underneath it, and my legs wouldn't hold my weight to be able to pull my body out.
- [07:38]
Lauren Wright Pacheco
Something you had done a million times before, right?
- [07:41]
Trent Fielder
I was worried I was gonna be stuck under there. It was the first moment, I think I felt fear that was distinct as to what is happening.
- [07:50]
Lauren Wright Pacheco
Attempting to shake off the awkward maneuvering, Trent took over two hours to drive just six miles home, Struggling the whole way to control his feet on the pedals. What did you initially chalk that up to?
- [08:08]
Trent Fielder
I just thought I was tired. You know, we were coming up on Christmas. I had saved all year for Christmas time off so that we could spend our first christmas with family. And I just thought my body was really a step ahead of me, wanting to go on vacation a little early. And it was Nicole who said, this is not exhaustion. This is something else. And she called the physician, she. She did all of this, so I would have continued just to write it off. And then he said, I need to see him right away.
- [08:34]
Lauren Wright Pacheco
And even in the midst of newborn twins with challenges, your wife took one look at you, and it was blatantly.
- [08:43]
Trent Fielder
Obvious to her, and she was not going to accept my answer.
- [08:47]
Lauren Wright Pacheco
If you're just tired, okay, so you go to the doctors. The next day I did, and he.
- [08:54]
Trent Fielder
Could tell that something was obviously wrong, but, you know, it's kind of hard to diagnose just in a primary's office. So they sent me over to a facility that's just next door to get a CT exam done. And after it was all done, they said, okay, you can go. And I just looked them, I said, I can't. I can't get up. And, you know, the first response was, okay, sometimes that's normal. You've been laying down for a while, and so we'll set you up. Well, as they're trying to set me up, I'm still going backwards, so I can't move my arms the way I needed to. My head was kind of like a bobblehead. I couldn't really control the muscles of my neck. So they realized something was wrong and contacted ems. Then everything just cascaded downhill.
- [09:39]
Lauren Wright Pacheco
I'm sorry, but that's. It sounds like a horror movie. You can't wake up from very much.
- [09:47]
Trent Fielder
So because you're suddenly completely dependent on everybody else and you don't know why.
- [09:53]
Lauren Wright Pacheco
Trent suddenly began losing control of his motor skills. With no family nearby for support, Nicole had to stay home with the kids, receiving updates from Trent only when he had the energy, which made the uncertainty overwhelming.
- [10:08]
Nicole Fielder
I was probably in disbelief, like, they'll figure it out. This is weird. Just acutely paralyzed. It was kind of like he couldn't feel his arms, and then he couldn't feel his legs. And I was like, whoa, what is going on? And they'll figure out something, but they never did.
- [10:27]
Trent Fielder
So, yeah, spinal tap, reflex exams, strength testing, trying to figure out a spasticity. They were doing everything they could, and nothing was spastic. It just wouldn't move. The main neurologist there, he was fantastic. So what he did is brought in other neurologists. I think there were five or six. And they all came up with essentially the same diagnosis. But what was interesting is the first time I knew I was really in trouble was I noticed that they pronounced it a different way, each one of them. And so I just asked him point blank. I said, you don't see this very Often do you? And he said, most neurologists will go through their entire career and never see this. Like, well, there's comfort. And that was when it started to set in that something was really wrong.
- [11:12]
Lauren Wright Pacheco
J. Trent soon found himself paralyzed from the waist down and losing feeling in other parts of his body. Doctors diagnosed him with Guillain Barre syndrome, or gbs, a rare autoimmune disorder where the immune system attacks the nervous system, specifically the spine, causing muscle weakness and paralysis.
- [11:34]
Nicole Fielder
And they told us when he first got sick that I would be a widow in about, I think it was two months, honestly.
- [11:43]
Lauren Wright Pacheco
Tell me exactly what they said and how you processed that.
- [11:48]
Nicole Fielder
I mean, they said that his disease was progressive and that he. He wasn't going to make it and to prepare, you know, how do you process that? I think the only thing that I like, truly, really vividly remember is the grocery store down there is Publix. And I just remember being in like aisle five of Publix. And then I had a little mental breakdown. And I cried for about 30 seconds. And then I was like, okay, putting my big girl pants in. Day by day, you just gotta do what you gotta do. That's like the one thing that I vividly remember from the whole thing. Cause all of it is just a blur, honestly.
- [12:27]
Lauren Wright Pacheco
Once moved to the icu, Trent sleep lungs began to shut down and he started losing more control of his bodily functions. Doctors acted quickly to prevent further damage. They attempted to regulate his immune system with steroids. Plasma pheresis, a process that filters harmful antibodies from the blood and replaces the plasma. And intravenous immunoglobulin, an infusion of antibodies often called ivig.
- [12:59]
Trent Fielder
I needed something to help give my body something else to fight instead of fighting itself. So the steroids did one good thing. They kept my lungs functioning. Even though the rest of my body was getting worse. I was able to breathe independently. I was trying to move my body by trying to do what I could to move whatever would move. I think I fell out of the bed a number of times just trying to get some sort of function back. I just. I didn't understand what was happening.
- [13:27]
Lauren Wright Pacheco
The doctors were able to get Trent breathing on his own again, but regaining feeling in his limbs took more time. Once his GBS was under control, he was transferred to a rehab hospital to start rebuilding his strength. Do you remember the first time you saw Nicole?
- [13:46]
Trent Fielder
I saw Nicole right before. Before they were going to transfer me.
- [13:51]
Lauren Wright Pacheco
Do you remember the look on her face the first time she saw you in the hospital?
- [13:55]
Trent Fielder
What I remember And I wish I could get the memory out of my head, but I remember being able to see through the doors of the ambulance and see her in my car behind the ambulance, and she just kept wiping her eyes as she was going. And I've never talked about that before. And I just, I was helpless. I was completely helpless. You know, she's got these brand new babies at home that need their father and she needs her husband. And that was when I, I broke. That was the first time I broke.
- [14:31]
Lauren Wright Pacheco
Oh, Trent.
- [14:32]
Trent Fielder
I felt like maybe I just needed to see her. Maybe it would give me a better perspective of what she was going through.
- [14:39]
Lauren Wright Pacheco
Have you ever told her about that?
- [14:42]
Trent Fielder
No. That's literally the first time I've ever talked about it.
- [14:46]
Lauren Wright Pacheco
So where were you on day one? Had you lost all mobility?
- [14:52]
Trent Fielder
I was able to move my neck around. I couldn't really lift it very well. So trying to get my neck to do that, that was difficult. But I'd learned ways to compensate by trying to start turning on my side or helping somebody to turn on my side where I could look from different angles, but I tried to start building my hands back.
- [15:12]
Lauren Wright Pacheco
Trent struggled to comprehend how he had lost his mobility so rapidly. Even more daunting, he had to focus on building the resilience to fight through whatever recovery he could achieve. Are you being given options in terms of treatment at this point?
- [15:30]
Trent Fielder
No. This hospital had only seen it once or twice. The neurologists and some of the physicians, even the physical therapists had read about it, but they never treated a patient with this condition. And they were very honest about that fact, saying, we're going to learn as we go. And that was a comfort to me. I was afraid that there was nobody I had to talk to. But for them to make that specific, I guess, goal in mind of that we're going to work on this together and figure this out together. That was incredible.
- [16:00]
Lauren Wright Pacheco
At 37, with seven month old twins at home, Trent faced an unexpected and terrifying new reality. His vision of fatherhood turned on its head. The fear and uncertainty were beginning to feel insurmountable.
- [16:16]
Trent Fielder
I was overwhelmed. I remember that one. It's just I could not get my heart to slow down because I was now farther away from my children and farther away from my wife. The only things I could think about were the negative things. I couldn't think about the opportunity that was there in front of me with the people that were part of my support team. And my focus was on what I'd lost. You know, it was, am I going to be able to go back to what I used to do. Not like this. It was very much wrapped up in the I can't do this anymore.
- [16:49]
Lauren Wright Pacheco
We'll be right back with Symptomatic A Medical Mystery Podcast.
- [16:58]
Nicole Fielder
When hydrodonitis suppurativa symptoms take over, it's tough. Bumps and abscesses keep coming back, but don't give up. Keep trying, fighting and using your voice to find relief. I asked my doctor about Cosentyx.
- [17:11]
D
Cosentyx Ecukinumab is prescribed for adults with moderate to severe hidradenitis suppurativa 300 milligram dose. Don't use if you're allergic to Cosentyx before starting, get checked for tuberculosis. An increased risk of infections and lowered ability to fight them may occur. Like tuberculosis or other serious bacterial, fungal or viral infections, some are fatal. Tell your doctor if you have an infection or symptoms like fevers, sweats, chills, muscle aches or cough had a vaccine or plan to or if inflammatory bowel disease symptoms develop or worsen serious allergic reactions and severe eczema like skin reactions may occur. Learn more at cosentix.com or 1844-COSENTIX Talk.
- [17:49]
Nicole Fielder
To your dermatologist about Cosentyx.
- [17:56]
Lauren Wright Pacheco
Now back to Symptomatic A Medical Mystery Podcast. Trent's life suddenly changed when GBS caused him to lose control of his motor skills, landing him in the the ICU with failing lungs. Doctors worked to stabilize him with treatments like plasmapheresis and ivig, eventually getting him breathing on his own again. However, feeling and mobility did not return, leaving his Recovery uncertain. At 37 with 7 month old twins at home, Trent and his family were desperate to rebuild his strength and adapt to this new reality.
- [18:48]
Nicole Fielder
He was in this motorized wheelchair. We were living in a two story home at the time. He was never fat, but he was a lot heavier than he is now and just being able to not use his hands fully. I mean our life was like a shit show for like a very long time because we got the infants and then they're in their little bumbo chairs and then their little bouncy chairs and there's like bottles everywhere and the dog running around and then this motorized wheelchair that was like a behemoth and he couldn't really use his arms so much and then we had to physically restructure everything in the house because he couldn't reach things up in the cabinet.
- [19:25]
Lauren Wright Pacheco
Feeling overwhelmed, Trent and Nicole decided to move from Florida to Texas. Being closer to Trent's family meant they would have the Extra help and support, support they truly needed.
- [19:37]
Trent Fielder
And literally the first day we moved back to Texas, the next day my father died. And so we were short of a huge part of my support system because he had really come through and been there to help me try to get back up on my feet. So we navigated a lot of grief and a lot of difficult situations.
- [19:58]
Lauren Wright Pacheco
Thankfully, through seemingly insurmountable challenges came a glimmer of hope. Trent's new physical therapist decided it would be beneficial to involve his family, including the kids, while establishing a strength building routine. This was especially meaningful because his son Logan, born prematurely and delayed in his development, was still learning how to move and walk.
- [20:23]
Trent Fielder
A lot of the physical therapy movements were trying to get, you know, that core strength. So they'd put you on a big medicine ball, rolling back and forth. Well, Logan was laying next to me, and so somebody went and got a small medicine ball and put him on the medicine ball. Here's this little baby who is learning how to walk the same time his dad is. It gave me such an inspiring view as to my relationship with my kids because I felt like I was losing that because I was away from them. It was beautiful. He got stronger and stronger, quicker and quicker because we spent that same time together.
- [21:05]
Lauren Wright Pacheco
Oh, does he have any idea how much he inspired you through those dark times?
- [21:11]
Trent Fielder
I let him know that all the time. People ask me who your hero is or who gives you the most strength. And my kids do. And I told Logan from the beginning, I said, people think I'm a fighter, so they don't know your story. I said, when they hear your story, they realize where my strength comes from. And I said, my strength comes from. Comes from you, bud. And you could see the smile creep in on his little teenager face.
- [21:38]
Lauren Wright Pacheco
A smile I got to see. So you guys learned to walk together? Basically, yes. That's amazing. Do you know what he told me?
- [21:47]
Trent Fielder
What?
- [21:48]
Lauren Wright Pacheco
He told me that you are his hero. He is also my hero.
- [21:58]
Trent Fielder
So started to see some improvement. We reached a point where I was able to use a walker with some AFOs, the ankle foot orthosis, which, for those that don't know, that's basically a brace that's right on top of your calves and your legs and designed to give you some stability. So I was able to. I reached a point where I was able to function that way. I couldn't drive or anything like that, but I was able to get some movement. And then about 10 months later, I started going downhill again.
- [22:26]
Lauren Wright Pacheco
And when it came back, what were the symptoms? What did that look like?
- [22:31]
Trent Fielder
The pain was immense. The spasticity was just out of control. The best explanation is if you get the right treatment and your body starts to restart, because basically your body is shutting down, you have a really good chance for the nerves to start connecting the way they should. In my case, they didn't. So it sparks sharp pains. The spasms were brutal. The spasms 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 fear kicks. And at that point, from what you read, is that it's extremely rare for Guillain Barre to come back, and if it does, it will typically come back worse. But this was very similar.
- [23:22]
Lauren Wright Pacheco
So you now have a great team caring for you. Are they testing you now? Are they questioning your initial diagnosis?
- [23:32]
Trent Fielder
They weren't necessarily questioning the initial diagnosis, but. But the longevity of what I was going through. So gal beret, typically, whatever damage it's done is done towards the beginning and it stays in your system. Usually typically around two years. But mine had gone well beyond that, and I'd seen such a drastic quick decline on the second go around that that's when they. They went in and took a look at it and they said, okay, well, whatever was in the beginning may have been so. But what fit and much more broader base in terms of what I was going to face for the rest of my life was cidp.
- [24:06]
Lauren Wright Pacheco
Due to the prolonged duration of his symptoms, doctors corrected Trent's diagnosis to cidp. Chronic inflammatory demyelinating polyneuropathy.
- [24:17]
Trent Fielder
Maybe the best description I was given about CIDP is your nerves have a covering on top of it, and that covering is a myelin sheath. And what happens is your body is attacking that myelin sheath that's attacking your nerve endings. So as it goes through the myelin sheath, then your nerves are kind of exposed. And so if they're exposed, it becomes more difficult to do the things that you would normally do. Your body can't recover. It doesn't function the same way. You know where it might affect your gait, it might affect your breathing, it might affect your ability to pick things up, your dexterity. It can be very frustrating. In a similar form as the gbs, basically, your body is constantly attacking itself. So it's another autoimmune situation.
- [24:59]
Lauren Wright Pacheco
And I'm assuming you'd never heard of it before.
- [25:01]
Trent Fielder
I had no idea what it was.
- [25:04]
Lauren Wright Pacheco
CIDP is a rare disease, often Misdiagnosed as gbs. While GBS comes on quickly and intensely, CIDP develops gradually over time and becomes chronic, making it a long term challenge to diagnose and treat. And Trent was hit with both in just a few years. Were you given a prognosis? Were you told what you should expect?
- [25:34]
Trent Fielder
So we did ivig. So that is a really kind of the go to treatment protocol for people with CIDP in most cases, especially the ones that are more severe.
- [25:44]
Lauren Wright Pacheco
Due to the similarities between GBS and cidp, both conditions are treated with the same methods over different periods of time. Trent's IVIG treatment was reinstated in hopes that it would be more effective over a longer duration.
- [26:01]
Trent Fielder
It gives your body something else to fight. So your body that's become very confused and is attacking itself will start to attack the medicine to where your body can start to rebuild that myelin sheath. So there's a small shelf life. Ten days into the treatment, you could feel it. You could feel your body starting to get weaker and it becomes harder to push a wheelchair. You start dropping things and get much more exhausted quicker.
- [26:30]
Lauren Wright Pacheco
By 2013, two years into his fight, Trent faced a new challenge. CIDP. The progress he had made in physical therapy was slipping away and painful flare ups had returned. Seeing this, Trent's doctors decided it was time to take more drastic measures to stop the deterioration and repair the damage.
- [26:53]
Trent Fielder
I went to a particular doctor that I'd heard of and he recommended that I get an implant put into my spine. So I agreed. I was nervous about having something that was really stuck with me for the rest of my life, but it made sense the way it was explained. But something went wrong. So in the surgery, there were some decisions made by the surgeon that went against protocol for what she would do with that implant. And he ended up cutting into my T10 vertebra. So I didn't know what had happened. I knew before I had weak and kind of the tingly feeling of my legs. That's really annoying pins and needles type feeling. Suddenly I went to. I couldn't feel him at all. And then it wasn't until 2014 where I realized just how bad of a mistake he had made.
- [27:47]
Lauren Wright Pacheco
On next week's season finale of Symptomatic, we continue Trent's story as the consequences of the failed surgery quickly push him to the brink of death.
- [27:58]
Trent Fielder
I ended up having two embolisms back to back. The second one actually killed me and I wasn't gone very long and they sat down and they said they needed to talk to me. 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.
- [28:18]
Lauren Wright Pacheco
But Trent refused to let his dire prognosis define his future, determined he would discover a treatment that would not only restore his mobility, but also place him on a path to becoming a world championship athlete. As always, we would love to hear from you. Send us your thoughts on this episode or share a medical mystery of your own@ symptomaticiheartmedia.com and please rate and review Symptomatic wherever you get your podcasts. And if you know someone who you think might benefit from the information in this episode, we encourage you to share it. We'll see you next time. Until then, be well. Symptomatic is a production of Ruby Studio from iHeartMedia. Our show is hosted by me, Lauren Bright Pacheco. Executive producers are Matt Romano and myself. Our EP of post production is James Foster, our supervising producer is Ciara Kaiser, our writers are John Irwin and Diana Davis and our editor is Ciara Spreen with additional help from Matt Stilo.
- [29:34]
Nicole Fielder
When hidradinitis suppurativa symptoms take over, it's tough. Bumps and abscesses keep coming back, but don't give up. Keep trying, fighting and using your voice to find relief. I asked my doctor about Cosentyx.
- [29:49]
D
Acukinumab is prescribed for adults with moderate to severe hidradenitis superativa 300mg dose. Don't use if you're allergic to Cosentyx. Before starting, get checked for tuberculosis. An increased risk of infections and lowered ability to fight them may occur. Like tuberculosis or other serious bacterial, fungal or viral infections, some are fatal. Tell your doctor if you have an infection or symptoms like fevers, sweats, chills, muscle aches or cough had a vaccine or planned to or if inflammatory bowel disease symptoms develop or worsen, serious allergic reactions and severe eczema like skin reactions may occur. Learn more at cosentyx.com or 1844-cosentyx Talk.
- [30:26]
Nicole Fielder
To your dermatologist about Cosentyx.