If you don't know Katie Stanina you can check her timelines (
1,
2) and updates (
1,
2) but the tl;dr is she was another patient of Dr. Trevino with a history of anorexia in her teen years now claiming all the usual zebra diseases. Needle in a munch-stack. The difference is Katie was born so premature she was almost non-viable and she has real and lasting effects from this including a learning disability. She's competent enough to not need a wrangler but wasn't really capable of understanding the gravity of what she's doing or that the girls she's "friends' with are lying to her. She used to run to the ER constantly for 'anaphylaxis' that was really anxiety. She made herself a screeching pest in every local hospital by refusing anything but the most extreme measures as promoted by her spoonie cult who also encouraged her to do things like purge through her feeding tube and dose herself with epinephrine against medical advice.
Shit hit the fan during quarantine when she was barred from going to the local cancer center for her port care and tried to do it on her own. Right after that she started posting about her rib and shoulder dislocating and how she was trying to sleep/walk off the pain. Turns out it was pulmonary emboli and if someone hadn't convinced her to go to the ER she would have likely died. She spent a month and change in the hospital alone and terrified because covid meant she could have no visitors. Both lungs collapsed, she had multiple bouts of pneumonia and pulmonary and pericardial effusion, developed interstitial lung disease and was finally diagnosed with pulmonary hypertension, an often-fatal disease. She developed a severe case of medical PTSD from this and her lungs never fully recovered. After that, any time she had a procedure, no matter how minor, she would desaturate and end up in the hospital for a week during which time she would have collapsing fits that made her hit her head on things. She was diagnosed with PNES and thrown in psych for self-harm and being combative with medical staff. Right after release she was back in the hospital with another bout of pulmonary emboli, sepsis, and a heart attack.
And then it turned out the seizures were real. She was finally diagnosed when she started having "classic" tonic-clonic seizures and by that time she was already starting to go into severe prolonged seizures - status epilepticus - that did not respond to emergency medication. One of these status seizures was so severe and prolonged that she went into respiratory failure and had to be put in a medically induced coma to save her life. She was discharged after many months with a vagus nerve stimulator and a trach tube. Our last update of sorts she was still trying to get the VNS properly calibrated. They had weaned her off the vent but because of the amount of scar tissue and the risk of performing any kind of surgery on her she still had the trach.
Alright, happy thoughts only because Katie's doing great. First some old posts from her facebook that I missed in my updates, from right when she was released from her hospital stay where she was in a coma. Celebrating no seizures thanks to her VNS, a ketogenic diet (the real kind for epilepsy where everything is precisely measured and balanced, and new medications.
They believe she has an extremely rare form of epilepsy. Now that she's actually sick, she has remarkable insight into the fact that watching her almost die over and over again is extremely traumatizing to her family and friends, perhaps even more than it is to her because she's not awake for it. Also praying that if she has to go back to the hospital that they please take her to her local one so she can be with her family which is totally heartbreaking. The last hospitals she's been in have been in Bradenton (an hour and a half south of her), Gainesville (an hour and a half north) and Orlando (2 and a half hours southeast).
Hurricane Ian is approaching and Katie is terrified that if her power goes out she will not be able to be suctioned and will aspirate. Thankfully they get through the storm with no loss of power.
And she's now getting back to playing her violin. It was something she used to really love doing and had a fair amount of talent for. She used to play in her church band and wants to get back to it. Sounds like she decided to get back into it while she was hospitalized forever.
Alright, I've already posted this but I want to post it again because it really helps us understand just how bad of a situation Katie is in. Katie used to be your typical zebra munchie and made a habit of going to the ER for "anaphylaxis," often chimping out when they told her she was just anxious/having a panic attack. She also sometimes would jab herself with epi explicitly because it would make them admit her. There is a good chance she really believed she was having anaphylaxis and needed to be in the hospital. This did not stop all the ERs in the area from flagging her as a frequent flyer and a drug seeker. She's not faking anymore. She's really sick with real epileptic seizures that show up on EEG and put her into respiratory failure. BUT because of her PTSD from being hospitalized she
also has involuntary psychogenic non-epileptic seizures. So in this post, she has had another prolonged seizure and gotten 911 called, paramedics abort the seizure, but when she wakes up in the hospital and is semi-delirious, she has a psychogenic seizure. The new ER docs see this and her history and assume she's faking the whole thing. Then they realize whoops, she's not faking and they have to drill into her bone for intraosseous access so they can very quickly get a lot of medication into her if she goes into status, even though she has a port and in the past they've used that. The comments are full of munchies like Jamie Bruce and Potsie Nicole, but also some real epileptics who commiserate and try to explain why IO access was necessary.
This turns into a two week ICU stay.
After which we learn that she's still being treated by Trevino for shit she doesn't have. She has a tiktok at the time under the handle blessedepilepticzebra08 but it's deleted.
Still sometimes tagging the zebra shit but it's rare. More and more she's only talking about the epilepsy and lung issues. We learn that one of the bouts of sepsis is what caused her epilepsy to go out of control.
Aww man, kid, you're breakin my heart. Once her real health issues started getting bad, she didn't want to worry her grandma by letting her know how sick she was so she kept finding excuses not to visit. While hospitalized she decided life was too short and she was going to visit her grandma and explain everything. Two days before she was scheduled to visit, grandma died. When she finally feels well enough to visit the grave she leans over and says "I'm finally here, grandma." Would whoever is cutting onions near my computer desk please stop? (Katie said "when I saw her at the funeral home", but she means cemetery. Her grandpa's been dead for 20 years and she was hospitalized during the actual funeral for more seizures.)
But we're back to happy thoughts because she finally can get the trach out after over a year.
She is still seeing the epilepsy specialist who saved her life and she's able to make it three whole months without a seizure because of him. This is huge for her.
Katie is now finding an identity and hobbies outside her illness. She LOVES cats so she starts volunteering to do social time at a shelter.
Unfortunately she has a seizure at church but she says that realistically, with her diagnosis she will always have these breakthrough seizures and she just needs to keep on keepin on.
The tone of her posts has changed entirely. She's now all about sharing small positive moments in her daily life and things that made her laugh.
She's still claiming EDS. Fine.
And she still gets down or has moments where she's angry and overwhelmed with everything. She has a dental issue, but all the treatments she can possibly take for it will interfere with her epilepsy medications or her blood thinners.
She gets the problem teeth extracted.
Five days later she's admitted for more seizure activity.
But the good news is all the treatment is working. She's having fewer, much less severe seizures that are easier to treat. She spends one day in the hospital and is discharged home.
Is she still clinging to the spoonie diagnoses? Yes, but it's never been clear how much of that she really believes and she's much, much less focused. No more running to the ER for MCAS every other day. She's smiling, her actual health problems are getting better, her port is no longer hanging out of her shirt in every photo if she even still has one, and she's finding things that are more important to her than social media. She may never get out of the zebra realm, but I no longer feel like any day now I'll be reading an obituary.
