Case #25: Trent (Pt. 1)

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I couldn't move my arms the way I needed to. My head was kind of like a bottlehead. I couldn't really control the muscles of my neck. He reminded me of kind of like a baby deer. The inabilities to control the balance for perception, the coordination, all the things in his lower body just wasn't there.

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?

And I just I was helpless. I was completely helpless. Yeah, she got these brand new babies at home, so need their father, and she needs her husband.

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 Brete Pchecko, and this

The majority of my job was spent out in the field, so I was driving around down the coast of Florida. That was basically my job.

What did you do?

I supervised auto appraisers for an insurance company, So I had the best job ever. I loved it.

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.

I had a discussion with my mom, who is 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 their thing. But the next morning I needed to take her back to the airport, and so I went to breakfast.

That's when Nicole entered the picture.

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.

And as we're sitting there at breakfast and talking about that my mother had and concerns that other people would have. I was sitting there, the cherver came up and she asked us for 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 said, you've never done that before, and I was didn't what

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, uh okay, and she gave me his business card and then a couple of days later, I was doing laundry and just going through my pockets and I found his business card and then I was like,

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.

Nicole has and I'm sure 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 under element and see how people respond naturally to her. They naturally want to open up to her, and they naturally feel better no matter what their circumstances are.

And for people who don't know Trent, how would you describe him?

He's just a 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 despite you. He's very tenacious.

To 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 Nevah began taking nutrients from her brother Logan, putting both at risk.

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 everything into overdrive. And from the moment of our first I guess realization is something was wrong. Within two weeks, the doctors came in and said, we have to take them. We had to take them now.

Logan was born weighing just too pounds five ounces and Navajah at three pounds eleven ounces. Both babies spent their first few months in the nick you fighting to grow stronger, a stressful start for the new family. At the time you started exhibiting symptoms.

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 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 a nicku that no parent ever wants to go into, and they're telling us that your son is dying. It

And at this point you began to experience symptoms you couldn't quite explain. Take me back to that moment.

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 sixteenth, twenty eleven, 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, camer and Gray and at a body

Out, something you had done a million times before.

Right I was worried I was gonna be stuck under there. It was the first moment I think I felt far that was distinct as to what is happening.

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 eat on the pedals.

What did you initially chalk that up to?

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 get 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 position. 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.

And even in the midst of newborn twins with challenges, your wife took one look at you, and it was blatantly obvious to her.

And she was not going to accept my answer if you're just tired.

Okay, so you go to the doctors the next day.

I did, and he could tell something was obviously wrong, but you know, it's kind of hard to diagnose just in a primaries office. So they sent me over to a facility that's just next door to get a seat exam done. And after it was all done, they said, okay, you can go, and I just looked at them and I said, I can't. I can't get up.

And you know, the.

First response was okay, that's sometimes that's normally been laying down for a while, and so we'll set you up. Was they're trying to sit 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 in contacted ems. Then everything just cascaded downhill.

I'm sorry, but that's it sounds like a horror movie. You can't wake up from.

Very much, so because you're suddenly completely dependent on everybody else, and you don't know why.

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.

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, what is going on, and they'll figure out something, but they never did.

So, yeah, spinal tap, reflex exams, strength testing, trying to figure out how 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. It brought in other neurologists. I think there were five or six, and they all came up with essentially the same diagnosis.

Trent soon found himself paralyzed from the waist down and losing feeling in other parts of his body. Doctors diagnosed him with Guyan Beret syndrome or GBS, a rare autoimmune disorder where the immune system attacks the nervous system, specifically the spine, causing muscle weakness and paralysis.

And they told us when he first got sick that I would be a widow in about I think it was two months.

Honestly, tell me exactly what they said and how.

You process that?

I mean, they said that his disease was progressive and that 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 a Publix. I just remember being in like Aisle five of publics and then I have a little mental breakdown and I cried for about thirty seconds, and then I was like, Okay, put in my big girl pants in day by day. You

Once moved to the ICU, Trent's 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. Plasmaphoresis a process that filters harmful antibodies from the blood and replaces the plasma and intravenous immunoglobulin an infusion of antibodies, often called ivig.

I needed 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 like. 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.

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 in a coal?

I saw in a coal right before they were going to transfer me.

Do you remember the look on her face the first time she saw you in the hospital?

What I remember? And I wish I could get the memory out of my head, but I remember being at to see through the doors of the ambulance and see her in my car behind the ambulance, and she could just kept wiping her eyes. She was going And I've never talked about that before, and I just I was helpless. I was completely helpless. Now she got these brand new babies at home that need their father, and she needs her husband. And that was what I broke. That was

Have you ever told her about that?

No, that's literally the first time I've ever talked about it.

So where were you on day one, had you lost all mobility?

I was able to move my neck around, I couldn't really lift it very well, so I'm trying to get my neck to do that. That was difficult, but I'd learned is 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.

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.

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 that we're going to work on this together and

At thirty seven was 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.

I was overwhelmed. I remember that one as 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 that 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 lost. You know, it was am I going to be able to go back to what

We'll be right back with Symptomatic a Medical Mystery Podcast. 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 ICU with failing lungs. Doctors work to stabilize him with treatments like plasmaphoresis and IVG, eventually getting him breathing on his own again. However, feeling

He was in this motorized wheelchair. We were living in a two story home at the time. He was never fat, that he was a lot heavier than he is now, and just being able to not use his hands fully.

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 they truly needed.

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.

Thankfully, through seemingly in surmountable 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.

A lot of the physical therapy movements were trying to get at core strength, so it puts you on a big medicine ball rolling back and forth. 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

Oh, does he have any idea how much he inspired you through those dark times?

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, said, 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 can see the mile creep in on this little teenager face.

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? What he told me that you are his hero?

He is also my hero. 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, it's basically a brace that's right on top of your calfs and your legs and designed to give you some stability. So I was able to reach the point where I was able to function that way. I couldn't drive or anything like that, but

And when it came back, what were the symptoms? What did that look like?

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 sparked 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, job would pop. It

So you now have a great team caring for you. Are they testing you now? Are they questioning your initial diagnosis.

They weren't necessarily questioning the initial diagnosis, but the longevity of what I was going through, so GALLMBRE. Typically, whatever damage it's done is done towards the beginning and next

Due to the prolonged duration of the symptoms, doctor's corrected trench diagnosis to CIDP chronic inflammatory demielinating poly neuropathy.

Maybe the best description I was given about CIDP is your nerves have a covering on top of it, and the covering is a milin sheath. And what happens that your body is attacking that mile in sheet that's attacking your nerve endings. So as it goes through the mile in sheath, and 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,

And I'm assuming you'd ever heard of it before.

I had no idea what it was.

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?

So we did ibig. So that is a really kind of a go to treatment protocol for people with CIDP in most cases, especially the ones that are more severe.

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 deraation.

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 mile in sheath, so there's a small shelf life. Ten days into the treatment, you could feel it, you could fill. Your body starting to get weaker, and it becomes harder to push a wheelchair. You start dropping things and get much more exhausted quicker.

By twenty thirteen, 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.

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, but 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 t ten vertebra.

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.

I ended up having two embolisms by 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.

But Trent refused to let his dire prognosis to find 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