Hey everyone!
Staff Badge for the Forum
First off, my bad to the Forum staff if this goes over the limit and I end up double posting.
So, look, bear with me here—I’m hoping you guys won't judge too harshly, because I really want to lay out my whole "brush with GBS" situation here in black and white.
Also, my bad for bumping this old thread.
So, here’s my little "one step closer to the grave" story.
Intro
I'm a 35-year-old guy.
So, here’s the deal: I’ve got this primary diagnosis—not gonna get into the weeds on that right now—that basically keeps me stuck in bed. After finishing my degree and putting in some actual years working in my field, I've been out on medical leave since October 2017.
Since then, I've been hit with a handful of new diagnoses. Some of them are pretty heavy hitters, too. Honestly, just trying to keep my head above water with all of it.
It all starts with them turning down the surgery—I went under the knife myself, and that’s exactly when everything started falling apart. You look toward those top-tier clinics in Europe or the best medical centers in the US, thinking you're in good hands, only to watch it all go south.
And just like that, December rolled around.
Where it all begins.
Look, we all know how this goes. Once winter hits and December rolls around, everyone starts catching every virus under the sun. It’s flu season, and suddenly, everybody’s rushing to get their shots.
Look, I’ve got a bunch of different health issues going on. I'm not getting into them, though—mostly because once upon a time, I actually opened up to some coworkers about my problems and they just laughed in my face and called me a liar. So, yeah, I'm keeping things vague. I'll only talk about GBS.
Right before New Year's Day, I got hit with this brutal intestinal virus. I was basically glued to the bathroom, running out of there ten times a day, just completely wiped out for a solid week.
(Anyway, I’m basically horizontal 95% of the time, but that’s not even what this post is about.)
New Year's Day rolled around, right around the Three Kings holiday, and everything finally just... settled down.
Since I already touched on this, I figured I’d give a quick rundown of what to expect before you head in for a colonoscopy—just in case anyone actually wants to know what they're getting into. My last post.I was on my regular meds—taking Martefarin because I've got that Thrombophilia diagnosis—but that wasn't even my main issue. Everything seemed to be going pretty smoothly.
I’m currently ditching the Martefarin and grinding through the prep before my colonoscopy.
Anyway, I’m off to get an ultrasound and take a shower.
Just so we're clear, my legs are acting a little weak because of my underlying diagnosis.
It hits me in literally a matter of seconds. Just total, overwhelming weakness in my legs—something I can't even put into words. One minute I'm fine, and the next, I can barely stand up, let alone move around on my own.
I was basically a total invalid for a while there, honestly. I couldn't even walk without someone helping me out.
Managed to drag myself to the ultrasound clinic—had to get some help from my folks just to make it through the door—but hey, at least that part's over.
When I was doing the prep for my colonoscopy, I honestly thought that nasty Moviprep was just doing its thing and making me feel weak.
Here we go again. Now there’s some fresh panic floating around that skipping out on Martefarin is going to cause blood clots and trigger a total meltdown.
Barely made it to the colonoscopy room in one piece. I laid out the whole story to the doctors, but they didn't suspect a single thing. Not a clue.
Get home, grab some food, and suddenly the water tastes like I'm sucking on a handful of pennies... yeah, that’s been the vibe for a few days now.
My legs are still tingling, and honestly, they’ve basically turned to wood at this point. Now my palms feel like they're on fire, and my hands are starting to go numb too. Everything just feels stiff and lifeless.
I don't even need to mention that they've started numbing out my glutes and private parts.
Honestly, I’m done. I’m officially boycotting the ER. I’ve had it up to here with the whole thing.
The next day? Things just went from bad to worse...
I'm trying to psych myself up to finally hit up my primary care doctor, but honestly, getting ready is feeling harder than usual... I was just brushing my teeth when suddenly the left side of my face starts tingling.
Eyes and mouth.
I just realized everything has gone completely south, so I'm heading to the Emergency Room.
Emergency.
Luckily, I live right near the ER, so even with the massive crowd, we got seen pretty fast.
Parents went through absolute hell, but somehow, we made it out the other side.
The triage nurse took one look at my paperwork—specifically the findings from Cardiology regarding DVT and thrombosis—and immediately shifted gears. Once she heard the full rundown of what I’ve been dealing with, she pulled some strings to get me moved "ahead of the line" so they could process me right away.
A few doctors decided to play it safe and insisted I pull an all-nighter in Observation just so they could keep tabs on my "progress."
Just an observation.
That night was easily the longest one I've ever had to sit through.
Usually, my bathroom routine is totally normal, but once things went south and I couldn't even stand up, my sister had to wheel me to the restroom in a wheelchair. It was absolutely brutal.
Nothing. No peeing, no pooping, absolutely nothing....
They gave me this "goose" [wheelchair] that I could BARELY even move in just to try and get to the bathroom, because she didn't have the time to wheel me there, but hey, that night passed anyway.
In the morning, after a total sleepless night, the doctor on duty came by to tell me that the medical board they called together specifically for my case decided it was best if I stayed on the Neurology Ward for further treatment.
I reluctantly agreed, mostly because I’ve spent the last two years bouncing between dozens of doctors and racking up over 10 different diagnoses—I was just totally done with the whole circus.
Still, out of pure fear, I said yes, and then they rolled me over to Neurology Ward V at the big city hospital.
Ward>
Once I got there, sitting in the chair and getting settled, I was just waiting for my parents to show up (because naturally, I am soooo shy) so my mom could help me get to the restroom.
After seeing that my legs felt like literal blocks of wood, I realized I really had to be in the hospital.
I finally managed to pee—squeezed out every last drop—and then the attending physician (Dr. Barbara Sitaš) took me in, did the intake, and told me they suspected GBS. She said they’d start with an EMG to check the nerve status.
The results (and honestly, the poking didn't even hurt) confirmed it.
Just a heads-up, they couldn't do a lumbar puncture because I've been diagnosed with both primary and secondary Thrombophilia (I'm on Martefarin), so we had to go with what we could do: plasma exchange.
Okay, now we get to the single most stressful part of all the hospitals I've ever been in.
They needed a urine sample so the nephrologists could figure out the best way to run the plasma exchange—which involved installing a CVC (central venous catheter).
The debate was whether to put it in the neck or the collarbone area.
They needed that urine test first, and since I had squeezed out everything I could, even after chugging 3 liters of water (which tasted like disgusting metal), nothing was coming out. The only option left was a urinary catheter.
Even though the nurses were lovely, it didn't help—it was such a deeply, incredibly uncomfortable experience.
One nurse kept saying, "Just calm down, sir, just relax, Mr. Larry Sullivan55"—NOPE, I seriously could not.
But eventually, once they got through to it, over 2 liters of urine finally came out.😁>
Everything went a bit smoother after that, thanks in part to this wonderful, truly amazing resident from a nearby city, Dr. Popović. During our talk, I really believe he "played a huge role" by pushing to have the CVC placed in the collarbone instead.
They installed the CVC in the collarbone that same day—the doctor was wonderful and basically said, "If we can't do the collarbone, we're going straight for the neck vein."
The guy—the medical tech who moved me around—was one of the three nicest medical techs I've ever met, but I'll save his story for another time.
He sees everything and notices everything.
Once the CVC was in, since I had lost feeling while chewing and "almost swallowing," they switched me to soft food right after lunch.
That night was just... brutal.
The pain was indescribable. My legs felt non-existent, and my arms were the same way.
My left eye was watering constantly, my mouth felt terrible, and I could barely speak at all.
Long story short, I underwent five rounds of plasma exchange every two days.
It wasn't until the very last session that I actually felt a shift, and only then could I SOMEHOW make it to the toilet—that was easily the hardest part.
The options were either adult diapers (which I refused because I wasn't about to lose my dignity) or a urinary catheter.
Yeah, I even had to use stool softeners because I went from having 3 or 4 bowel movements a day to just ONE every 3 or 4 days.
It was gross, painful, unstable, and pathetic.
The absolute worst part was essentially having to relearn how to speak, eat, swallow, and drink liquids.
Final week>
That might have actually been the "mildest" part of my stay at the hospital.
Whenever I managed to limp my way to the bathroom—mostly crawling at this point—things felt a little easier.
I could even wash myself.
Staff>
The way the nurses, the head nurse, the techs, the doctors, and the physical therapists treated me... it honestly always touched my heart.
I haven’t seen this much heart, empathy, or genuine hustle to help someone in my entire "hospital life"—and trust me, I’ve been through plenty of them.
The nurses and techs were just incredible. Every single time they stepped into our room (Number Two), they did their thing with a smile. It was actually a relief just being around them while dealing with the injections and the meds.
Honestly, someone should build them a monument.
It was an honor getting to know them during my three weeks of recovery.
Even the nurses who had to deal with inserting the catheter... they were absolute gems. 🤣
Look, I'm joking now because the worst is over, but back then, it wasn't funny at all.
From where I was sitting, those guys and girls were doing their jobs at about 201% professionalism.
Just beautiful, kind, and insanely skilled people.
On top of everything, I have to admire them for putting up with me for two weeks, basically leading me to the bathroom like a toddler because I couldn't manage on my own.
It was just the bathroom; for everything else, I tried to handle it myself before they eventually helped me back to bed.
They even had to wash me twice since I couldn't do it alone—which was incredibly awkward, let me tell you—but they handled it with a smile. They were just too kind.
They won me over with their warmth, and they'll always have a piece of my heart.
I won't name names, but if any of them stumble upon this post, just know I'm "that guy by the window who kept bugging you for help getting to the restroom."
I'll never forget them. 😍
As for the doctors, they were nothing short of amazing.
I've never experienced that level of attention, compassion, expertise, and calm.
Every one of them—but especially Dr. Miller, Dr. Smith, and Dr. Jones—literally saved my life.
One person, who I won't identify, told me, "LarrySullivan55, do you realize how lucky you are? If you'd shown up just one day later, you'd be dead."
Something I noticed was that I was the youngest one on the unit. By the end, I was walking with a walker and seeing some pretty elderly folks on the floor.
Most of the doctors were actually my age, and you could tell they treated me more like a friend than just another patient.
And they were everywhere—they showed up for rounds way more often than required.
Speaking of rounds, because of my specific diagnoses, I ended up having about ten different visits from medical students. They were using my case as a textbook example of how certain neurological diseases manifest for their upcoming exams—hopefully, these students passed after seeing my mess. 😁
One of the guys in my room told me, "Man, you basically gave them a whole lecture on your illnesses without them even asking a question." 😁
