From Pellegra To NET
Day 24 of a hospitalization in New Mexico — one of the worst medical states in the country. Not enough providers. Not enough care. And me, stuck in the middle of it, running on depleted stats, trying to get the bare minimum while they try to street me.
This is not a linear story. This is a playthrough where you don't find out what game you're actually in until you're already deep in the dungeon.
I am home on TPN, IV steroids, a PICC line. Homebound. Lupus. Gastroparesis. Healing ischemic colitis believed to be "Lupus Vasculitis." Four cats. Four ducks. A husband. Living my best life between respawn points, truly.
And then my tricuspid valve — mild regurgitation, background noise, barely a stat — deteriorated to severe in ten weeks.
Wait. Still rewinding.
There was a rash on my back. January. It was biopsied. Positive for Amyloid.
A hidden lore item. Sitting right there in the inventory. Nobody picked it up.
Dermatology said the muscle needed a biopsy too. That was supposed to happen in late February. But in late February I was being scoped and piped for ischemic colitis — a forced encounter I did not choose and could not skip. The muscle biopsy quest got abandoned mid-dungeon.
Filed under: later.
Later, it turns out, was already happening. We just didn't have the right lens equipped yet.
April. Heart symptoms getting worse. I go to my scheduled primary appointment and she sends me directly to the ER.
"Pericarditis. Admit — wait, we don't have a bed — okay we're going to send you home, and you need to see a cardiologist THIS WEEK."
We can all laugh at that.
My rheumatologist gets nervous enough to call a STAT cardiology appointment. Four business days. That's STAT in New Mexico. My rheumatologist, bless her, is the only healer in this party who has been paying attention to the actual health bar.
The appointment is set for May 21st.
I start throwing up with a fever on Sunday night, May 18th.
I go to the hospital where the cardiology appointment is scheduled. Mistake. Wrong server. They don't have half my records. And because I have an Enterra II device I can't have an MRI of most of me — head and extremities only, and only if they turn it off first.
New zone. Worse gear. Same damage incoming.
Day 24. New symptom roster since admission: tremors, possible seizures, cognitive decline that I can only describe as dementia-flavored, new rashes, neuropathy, difficulty walking, anemia, low calcium, low protein. Labs that look nothing like my stable weekly TPN labs from two weeks before I got here.
My stats have never looked this bad. Not even close.
What does the team say?
"Your labs are off because you're in the hospital."
The labs drawn the night I arrived. Before I had been in the hospital long enough for it to matter. Labs that were normal four days prior, at home, on TPN, stable.
"Your labs are off because you're in the hospital."
I need you to sit with that logic for a moment. I had to. Extensively.
Here is what I know, what they know, and what keeps getting denied anyway: my labs are a debuff. A stack of debuffs, actually. Actively tanking my stats. Visible on the screen. Flashing. The little skull icon is right there in the corner and has been since the night I walked in.
They keep telling me I have no debuff.
I have been watching my own health bar. I know what my baseline looks like. I have weekly TPN labs going back months — normal, stable, consistent. And then I got sick, and the numbers changed, and I walked in with the changed numbers, and the answer has been, every single time: that's just what happens when you're in the hospital.
That is not a medical explanation. That is a loading screen they put up so they don't have to run the diagnostic.
Now. Here is where the map starts to make sense. Here is where the hidden lore items start connecting.
Test results: elevated CGA. Blood 5-HIAA flagged positive. Nicotinic acid — none detected.
Nicotinic acid. None. Detected.
That is Pellagra. The niacin deficiency disease. The one we eradicated from the developed world when we fortified bread. The one that causes diarrhea, dermatitis, and dementia — which, funny enough, I have all three. The one that shows up when a Carcinoid tumor is eating all your tryptophan before your body can convert it to niacin.
A debuff. Running since January, at minimum. Nobody read the status effect.
The cardiac workup: right heart cath, left heart cath, TEE. Tricuspid regurgitation — severe, no valve damage, no dilation, no carditis. The cardiologist worked very hard — very, impressively, almost heroically hard — to disprove two previous echos from two other hospitals. One from March noting vegetation. One from April noting mitral involvement and LV dilation.
When all the disproving was done and the data still pointed toward Carcinoid heart disease, the answer was: "You're compensating well. We don't need to worry about Carcinoid right now."
They assigned me Functional TR — even though every listed cause of functional TR had been ruled out in their own notes. The notes literally say "patient does not have..." for each one. The things that cause it are not present. And yet here we are, sitting with the diagnosis, because the alternative required someone to say a word out loud.
Then one doctor walked in. Read the whole chart. Looked at the whole picture.
Said: you have Carcinoid.
The NPC who breaks from the script. The one who wasn't supposed to tell you. He said it anyway.
They got mad at him. (continued)
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Connect

(From the OP Part2)
We didn't know about Carcinoid before that moment. And then we did. And then the entire questline recontextualized at once —
The rash in January. Cutaneous flushing. Pellagra-type presentation. Classic NET lore item, sitting in the inventory since the start of the game.
The ischemic colitis. Serotonin-mediated mesenteric vasoconstriction. Classic NET.
The tricuspid valve. Carcinoid heart disease. Classic NET.
The Pellagra. Tryptophan hijacked by tumor. Classic NET.
The tremors. The liver lesions. The "hepatic thingamajigs" on imaging nobody wanted to name on a weekend. The flank pain. The new kidney stone. The iron and protein studies that kept getting explained away.
Every side quest was the main quest. The boss music has been playing since January. We just couldn't hear it over the sound of everyone telling us it was something else.
And now I am here.
Mayo intake. New zone loading screen. Same character, same damage, half my buffs stripped, inventory stuffed with inconclusive labs and ignored results and a 5-HIAA that was collected wrong and labeled inconclusive while the blood test already flagged positive.
Starting from zero. Half scared out of my mind.
Do I let them discharge me — unsafely — and appeal it? Do I fight for the transfer? Do I demand the 24-hour urine 5-HIAA get repeated correctly, here, now, inpatient — not outpatient, not in eight months?
All of the above. Simultaneously. While trying to remember my own name on the bad cognitive days.
There is something deeply disorienting about finally identifying the Final Boss — finally having the name, the questline, the map — and still having to convince a room full of people to show up for the fight. You'd think the hard part was not knowing. Turns out the hard part might be knowing, and having to prove it again, from zero, to a party that just loaded in while you've been in this dungeon since January.
February 2027 is eight months away. I have severe tricuspid regurgitation. Active neurological symptoms. A tumor working through me since at least the start of this year. A critical diagnostic test that was run incorrectly and never repeated.
Eight months is not a follow-up plan. Eight months is what the game assigns you when the system has decided, quietly, that your run doesn't matter.
I am here. We are here. The Final Boss has a name now.
And I am not waiting until February 2027 to find out if I survive this playthrough.
THANK GOD FOR MAYO CLINIC and intake department.
If you've been through NET diagnosis — especially with cardiac involvement, or a long road that looked like autoimmune disease first, or a system that kept treating every symptom as its own isolated side quest instead of reading the whole map — I want to hear from you.
What did your path look like? Who helped? What did you have to fight for? Do you feel like you are in a simulation game also, Looking for the EXIT GAME door too?
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1 ReactionWell, first off, congratulations on not only getting your screen name right, but having the longest post I've ever seen and I've looked at a bunch of em. Your journey has been remarkable, that's for sure. I was also on TPN for quite a while. I also fought what I thought was gastroparesis (ended up being 3 small bowel constrictions due to NETs tumor I still carry). Not uncommon for people with these conditions to have the nutrition of a refugee. I suspect you have malabsorption causing those bad labs.
Fortunately you seem to be climbing out of a dark place with MAYO. Do the best you can each day you're given. Good luck to you.