Went a little too hard here 😂 Thank you so much for 32K!!! Enjoy another lovely dancing draft. #danceitout #teamtricia #terminallytricia #tiktokfam

So thankful for this broken body that somehow still allows me to do fun things like this. 💚 #danceon #dancingintherain #teamtricia #terminallytricia

You got this👍🏻💚🤟 #goodmorning #negu #frog #teamtricia #terminallytricia #mito #eds #mcas #cvid #organfailure #tpn #trach #ventilator #lifesupport #centralline #ileostomy

Warriors aren’t the ones who always win, but the ones that always fight. #fungemia #bacteremia #candidemia #sepsis #terminallytricia #teamtricia #intestinalfailure #mito #eds #cvid #mcas

This pic was taken just 3 months before my gi tract began to shut down. #thebeginningoftheend #intestinalfailure #teamtricia #terminallytricia #mito #mcas #eds #cvid #respiratoryfailure #tracheostomy #trach #ventilator #lifesupport #tpn #

It was, in fact, NOT “just a few” more days. #respiratoryfailure #lifesupport #ventilator #tracheostomy #septicpulmonaryemboli #pulmonaryembolism #sepsis #teamtricia #terminallytricia #mito #mcas #cvid #eds #greenscreen

My brain basically thinks it’s a part of my body now 😆🤷‍♀️ Stitch this or comment below what funny things you’ve done as a result of being in the hospital too much #professionalpatient #teamtricia #terminallytricia

Still so much to process…I get the chills & emotional just thinking about it. Thanks Ellie! Maybe next time 🥹🦄💚 #neardeathexperience #NDE #sepsis #bacteremia #fungemia #lifesupport #ventilator #ARDS #pulmonaryemboli #teamtricia #terminallytricia

Update continued… This is a perfect example of how fast I can go down hill. One sec I’m forcing myself to push through the pain & do a TikTok dance in an attempt to lift my spirits, then the next thing you know, I’m back at it again, throwing hands with the grim reaper, unable to roll over in bed without being in excruciating pain. One of my 2 remaining IVs blew just mins later, so people were then digging around in my arms and legs for HOURS trying to place another at 3am with no success. We then had no choice but to place an urgent femoral line around 6am, which also required A LOT of digging around, as well as 4 puncture sites due to all the scar tissue. Sadly, this means we didn’t get as long of a line holiday as we had hoped, but something is better than nothing. Mon night/Tues morning I started spiking fevers up to 102.5 and was super lethargic & out of it until Wed night. Cultures drawn while placing my femoral line Sun night/Mon morn are now growing VRE, which wasn’t exactly a big surprise considering they took me off my iv antibiotics that were treating it a few days ago. They put me back on daptomycin for that but may have to switch depending on what susceptibility testing says. (Update: it’s resistant to dapto so I’m back on zyvox) There’s so much I’m sure I’ve left out, but I’m so exhausted and my brain is mush, as I’m currently running a fever again. I’ve written this update a billion times but things keep changing before I can post, so thank you for y’all’s patience and continued love and support. You seriously mean more to me than I could ever put into words. I love you all so so much! Please keep all the good vibes and prayers coming. I definitely still need them to fight these infections off, especially the candida, as it continues to become more and more resistant to everything. Please pray for my medical team as well. I’m so thankful for the amazing nurses, RT, PT, drs, etc. in St Louis! While I realize theres still a high likely hood this infection could take me, they are at least trying to fight along side me & not just giving up, which is all I could ever ask for. 💚 #teamtricia #negu #fungemia #candidemia #bacteremia #sepsis #icu #BJC #intestinalfailure #terminallytricia #intestinalfailure #mito #mcas #eds #cvid

It’s so easy for health care professioanls to see me as nothing more than my diseases. They see me at my worst in the ICU and wonder why I’m being kept alive. They tend to forget, under all these tubes and wires, is a girl with a life worth living, a life worth fighting for. #teamtricia #terminallytricia #professionalpatient #notavegetable #mito #eds #mcas #cvid #lifesupport #tracheostomy #ventilator #tpn #intestinalfailure #respiratoryfailure

The jumping in this dance nearly did me in! But what better way to celebrate being home after a long hospitalization?! #danceparty #beenlikethis #danceitout #danceon #dancingthroughthepain #teamtricia #terminallytricia

Never a dull moment… 🤦‍♀️ #poweroutage #snowstorm #lifesupport #ventilator #terminallytricia #teamtricia #welcometomylife

Replying to @ella.blue2 Day 1: Where you at @Meghan Trainor and @Chris Olsen ???#madeyoulook #bucketlist #meghantrainor #chrisolsen #dancingintherain #danceitout #danceon #teamtricia #terminallytricia

Love you guys so so much 💚 This really sucks! #bacteremia #fungemia #sepsis #intestinalfailure #terminallytricia #teamtricia #mito #eds #cvid #mcas

Honestly didnt expect to feel happy using this filter/doing this trend…i guess i just came to terms with dying young so long ago that i never thought id get to see what i looked like older. I love it and god i hope by some miracle i get to experience it in real life #thelittlethings #teamtricia #terminallytricia #onlythegooddieyoung #respiratoryfailure #intestinalfailure #ventilator #lifesupport #tracheostomy #hereforagoodtimenotalongtime #mito #eds #mcas #cvid

Hospital Update: Last Sunday (3/17) they pulled my infected line and placed a quad lumen femoral line in IR. We hoped the yeast growing would be the less resistant strain but that would be too easy. How I love being an overachiever. 😜Once again, amphteracin b is my only shot at kicking this so we are hitting me with that. The blood cultures initially continued to grow candida glabrata after pulling the line, setting things back a bit. But if all goes perfect and my most recent cultures remain negative, they can potentially place a new triple lumen line & pull this femoral as early as Wed/Thurs. I’m still having chills, sweating, and my WBC jumped a bit so we are keeping a close eye on that. I’ve had a huge increase in ostomy output, which only happens when I have a gi bleed usually, and my hernia is definitely getting bigger. My ileostomy is swollen and the skin is actually bruised around the stoma itself, which I’ve never had before, so who knows what is going on in there. We’re kinda just waiting and watching that stuff too atm. I’ve had more chest tightness, shortness of breath, and some pulmonary edema, so they have been messing with my vent settings, trying to get control of my co2 and ph. Lots of adjustments trying to find a sweet- spot breathing wise, but we finally seem to be getting there. Ugh, this is not how our ski trip was suppose to go. I didn’t even make it past Denver. I can’t believe I’ve been stuck in the hospital for over a week now. Please pray I start improving and can get my new line soon. I feel so blessed, as everyone taking care of me so far has been nothing but amazing. I can’t complain too much about the view either, but damn I just want to go home already! 😭 #teamtricia #terminallytricia #bacteremia #fungemia #candida #sepsis #intestinalfailure #tpn #ventilator #tracheostomy #trach #lifesupport #mito #eds #mcas #cvid

Discomfort?! A 4in long needle digging around in my arm for 20 min hitting nerves = PAIN my dude, not discomfort. 😆 y’all are so afraid of using the word pain to describe anything it’s comical #hospitallife #bloodcultures #terminallytricia #teamtricia #bacteremia #fungemia #candidaglabrata #vascularaccess #centralline #tpn #intestinalfailure #mito #eds #mcas #cvid

It’s been an adventure, that’s for sure…an adventure through hell and back! 😳 #sepsis #septic #bacteremia #fungemia #ARDS #pulmonaryemboli #terminallytricia #teamtricia #neardeathexpierience #pulmonaryedema #respiratoryfailure #ventilator #lifesupport

If my videos help just one person know they aren’t alone, it makes all the pain and suffering I’ve endured beyond worth it and gives me a sense of purpose. 💚💚💚 #teamtricia #bodypositivity #terminallytricia #ostomyawareness #intestinalfailure #respiratoryfailure #tracheostomy #trach #lifesupport #ventilator #gtube #centralline #mito #eds #mcas #cvid

In my feels processesing all that’s happened the past week. I’m so grateful to be alive. So so grateful. #thankyouforjoy #thankyouforpain #sepsis #pulmonaryemboli #ARDS #respiratoryfailure #bacteremia #candidemia #fungemia #pulmonaryedema #teamtricia #terminallytricia

Honestly, hell is a massive understatement. Hospital Update: Day 65 All week I’ve been spiking high temps up to 104.7. The bone pain has gotten EXCRUCIATING, making sleeping and just being a productive human, or a human at all, impossible. Everyone’s trying their best to control my pain, but unfortunatley meds can only do so much. Tests show the Candida (infection) is growing even faster in my blood and has built an even higher resistance now, while still having no know drugs to treat it. Thankfully, ID refuses to give up on me, and has gotten other experts opinions. They’ve gotten creative and are trying different combos of meds but our hands are really kinda tied and I’m still showing no signs of improvement. The way things are heading, I don’t have a lot of time. We need to find a hospital ASAP, that our crappy insurance will cover, with an intestinal failure surgeon who has experience with complicated patients like me, and an ID department with access to the latest up and coming antibiotics/antifungals, any potential trials, research etc. Unfortunately, the health care system is so broken and really just a big numbers game, where I’m just another blank face with a dollar amount and survival stats on my forehead. What ever happened to the humanity in medicine? 😪 Thank you all so much again for your patience with my lack of updates. This whole week has been so exhausting and a total blur. Your unwavering love and support means more to me and my family than you’ll ever know. #bacteremia #fungemia #sepsis #candidemia #terminallytricia #teamtricia #intestinalfailure #centralline #mito #eds #cvid #mcas

Taking it one (holi)day at a time. Lovely wrist bruising courtesy of countless ABGs…my fav 😒 #cantkillmeyet #sepsis #septicshock #pulmonaryemboli #ARDS #pulmonaryedema #respiratoryfailure #lifesupport #ventilator #teamtricia #terminallytricia #deadjokes #darkhumor #mito #eds #mcas #cvid #bacteremia #fungemia

Candida apparently wasn’t enough. My body just had to sprinkle more resistant bacteria into my bloodstream, and my lungs now too! #gobigorgohome #overachiever #professionalpatient #terminallytricia #teamtricia #bacteremia #fungemia #sepsis #candidemia #pulmonaryedema #overit #intestinalfailure #mito #mcas #eds #cvid

Comforting words everyone wants to hear from drs #terminallytricia #bacteremia #fungemia #candidemia #sepsis #intestinalfailure #intestinalfailureproblems #mito #eds #cvid #mcas

Comment which tubie pad you want and winners will be drawn tonight at 10pm CST. Xmas trach pads and hair scrunchies will be posted later too, as well as more tubie pads. #triciastubies #tubiepads #feedingtube #trachpads #trach #xmas #scrunchies #teamtricia #terminallytricia #randomactsofkindness #spreadlove

Seriously though, the bone pain is an indescribable hell I hope you never have to experience. #fungemia #bonepain #candidemia #bacteremia #sepsis #intestinalfailure #mito #eds #mcas #cvid #respiratoryfailure #terminallytricia #teamtricia

Hospital Update: Day 60 A week full of “hurry and wait”. I’m so physically and mentally exhausted. If only everything in the medical system wasn’t a numbers game. #bacteremia #fungemia #sepsis #candidemia #hurryandwait #hospitallife #professionalpatient #teamtricia #terminallytricia #intestinalfailure #intestinalfailureproblems #centralline #mito #eds #mcas #cvid #tracheostomy #trach #ventilator #vent #respiratoryfailure

No, but it’s actually criminal how freaking expensive health care is in the US. #ushealthcare #medicalsystemfailures #professionalpatient #teamtricia #terminallytricia

Do you know the muffin man??!! #ivelostmymind #sos #themuffinman #hospitallife #professionalpatient #icu #icudelirium #terminallytricia #teamtricia

Got home Friday (4/5) and sure enough, Mon (4/8) I spiked a temp. Blood cultures were drawn & they’re once again growing yeast. I was readmitted Monday, just a few days ago, and restarted on amp b. Still figuring out a game plan and waiting on more cultures and tests. Ugh I hate this. #teamtricia #terminallytricia #intestinalfailure #translocation #sepsis #fungemia #candida #bloodstreaminfection #mito #eds #cvid #mcas #centralline #tpn #lifesupport #tracheostomy #trach #ventilator

I was suppose to be sit skiing with the NSCD in Winter Park, CO the last couple days but the universe had other plans. We got stuck in Denver thanks to a big snow storm, so I figured what better time to throw hands with a little bacteremia and fungemia? My amazing drs and home health company overnighted new iv antibiotics to our hotel as soon as my cultures started growing. We initially were hoping they’d kick in & I’d be able to make it up the mountain to ski. Unfortunatley, I continued to get worse and then my cultures grew yeast, so off to the hospital I went. Having to go to the hospital, especially one that doesn’t know me, is always scary. Thankfully everyone has been amazing so far. I’m heading down to IR now to have my infected line removed & a quad lumen femoral placed. Please pray I remain stable and we can get this infection undercontrol asap. With how sick I got in Dec, my medical PTSD and anxiety are through the roof. #teamtricia #terminallytricia #sepsis #bacteremia #fungemia #centralline #ptsd #medicalptsd #interventionalradiology #ir #femoralline

The audacity of this infection. Cultures are still growing candida. I want to cry. #fungemia #candida #bacteremia as#bloodstreaminfection #sepsis #intestinalfailure #intestinalfailureproblems #translocation #terminallytricia #teamtricia #ifyoudontlaughyoullcry

Hospital Update: Day 100 (Technically it’s day 102 now bc it took so long for me to edit lol) The past 100 days have gone by painfully slow, yet somehow fast at the same time. My entire summer just…gone. So much “hurry and wait.” Ugh, 100 days and I am still exactly where we started when I was admitted, if not worse. All my drs agree, my only hope is getting to a tertiary hospital with more resources and experience with intestinal failure patients like me. As exhausted as I may be, I have never been more motivated to fight for my life than I am right now…but I can’t do it alone. Please continue to pray we find a hospital willing to fight just as hard as I am. My story isn’t over yet. I can feel it in my bones…along with the pain from the fungemia lol 😝 #teamtricia #fungemia #bacteremia #candidemia #sepsis #icu #mito #eds #cvid #mcas #intestinalfailure #terminallytricia

PSA: TURN THE LIGHTS BACK OFF!!! #lightsout #hospitallife #terminallytricia #sickkidproblems #nosleep #hospitaltiktoks #bacteremia #fungemia #sepsis #icu #mito #eds #mcas #cvid

Constantly being forced to watch others live out the dreams I once had really sucks sometimes. Even though I’ve found peace & am content with my purpose today, it will never not sting a little. I will never not think about what my life would be like, had I been able to do what I wanted. #grief #chronicillness #teamtricia #terminallytricia #mito #eds #mcas #cvid #intestinalfailure #intestinalfailureproblems #respiratoryfailure #lifesupport #ventilator #tracheostomy

Update more later but heading down for femoral line now #ir #sepsis #bacteremia #fungemia #candida #teamtricia #terminallytricia #intestinalfailure

Hospital Update: Day 95 Sorry for the lack of updates recently. Things have been pretty rough. Blood cultures still remain positive, growing VRE and Candida. Susceptibility testing shows these resistant bugs are only growing stronger. Last Friday (8-11), they again decided to pull my left femoral line and place a new one on the right side, along with an IV in my left arm. Despite this, and switching IV antibiotics/antifungals around, blood cultures have remained positive and I’ve remained miserable for the most part. Sadly, the IV in my left arm didn’t last more than a few days and has left me with an occlusive blood clot in my mid to distal brachial vein (my bicep area). It’s swollen, red, hot to touch, and painful so they went up on my Lovenox dose and will be consulting IR since it hasn’t improved and just gotten bigger. Speaking of IR, today they’ll be,once again, pulling my femoral line and placing another on the left side. ID believes the line is now colonized and wants it out asap. We know the new line will probably still get infected, but it might buy us a tiny bit of time. The infected line is kinda like a beehive. Knocking it down won’t get rid of all the bees, but it will temporarily get rid of most of them, and slow them down until they build a new hive. Pulling the colonized line won’t get rid of the infection completely, but it will temporarily get rid of the most of the bugs that latched onto it, slowing down the infection until the bacteria/fungi make a home latching onto the new line. This never ending cycle is beyond exhausting. All my drs agree that I desperately need to get to a tertiary hospital with more resources and experience, so they can remove my leaking bowel, and/or provide other interventions that will fix the source. Sadly, most hospitals these days don’t see me as a human being, just another number, a dollar amount, a survival statistic. Nobody is willing to take the risk on me. Many hospitals are at capacity right now too and not accepting any outside transfers. This has made it incredibly hard and after being rejected a few times, they’ve decided they are tired of doing all this work, just to be told no, and will no longer “waste their time” reaching out to try and find a hospital that could help me… Despite being completely drained physically and emotionally, I’ve still got a lot of fight left in me and want to exhaust all my potential options. I’m not giving up yet… but those around me are and I can’t do this alone. Please please pray for strength. Strength for the medical professionals caring for me. Strength for my body fighting these relentless deadly infections. Strength for my soul to not lose faith or give up, simply because others have. Thank you all so much for your support and patience with updates. I don’t know what I’d do without you all! 💚 #negu #teamtricia #terminallytricia #bacteremia #fungemia #candidemia #sepsis #lifesupport #tracheostomy #tpn#tpnntilator #i#intestinalfailuremito #mcas #cvid #eds

I just want to feel better already 😩😓#bacteremia #sepsis #icu #ivantibiotics #centralline #intestinalfailure #mito #eds #mcas #cvid #teamtricia #terminallytricia #trach #vent #lifesupport #tpn

Do you know what dr I saw??? Comment below! #guessthedroffice #professionalpatient #terminallytricia #teamtricia #mito #mcas #eds #intestinalfailure #ventilator #tracheostomy #respiratoryfailure

Replying to @Snuggle _upa_ kiss Well…not quite 😅 Ain’t nothing new 🤷‍♀️🤣 #beenlikethis #aintnothingnew #meghantrainor #tracheostomy #trach #lifesupport #ventilator #teamtricia #terminallytricia #danceitout #dancingintherain #dancingthroughthepain

Oh the things I wish I could tell my younger self. I didn’t have a clue what I was in for. ❤️‍🩹#cherisheverymoment #danceintherain #terminallytricia #teamtricia #mito #eds #mcas #cvid #intestinalfailure #respiratoryfailure #sepsis #bacteremia #fungemia #candidemia #tpn #tracheostomy #ileosotmy #centralline

Don’t worry, I’ve still got things to do, places to see, & plenty to check off my bucket list! #notgoingdownwithoutafight #terminallytricia #teamtricia #bacteremia #fungemia #sepsis #intestinalfailure #mito #eds #cvid #mcas #palliativecare #hospice #onlythegooddieyoung #respiratoryfailure #lifesupport #ventilator #tracheostomy #tpn

I speak the truth 😜 #sorrynotsorry #nofilter #idgaf #terminallytricia

Why so early? Just, why?! I mean, I know why…But WHY?!!! #hospitallife #labdraw #professionalpatient #terminallytricia #teamtricia #bacteremia #fungemia #sepsis #bloodcultures

Heading down to get femoral line now. Ugh, this sucks! #IR #femoralline #terminallytricia #bacteremia #fungemia #sepsis #mito #eds #mcas #cvid #candida ##intestinalfailure #intestinalfailureproblems #translocation

So over this b!tch’s BS! This fight ain’t over yet! Honey, I’m just getting started! 👊👊👊 #candida #candidemia ##fungemia #bacteremia #sepsis #terminallytricia #teamtricia #intestinalfailure #mito #eds #cvid #mcas

Even if just for a few seconds at a time, I’m so grateful my body is allowing me to dance again after all it’s been through this past year. #grateful #teamtricia #terminallytricia #dancingintherain #dancingthroughthepain #danceitout #beenlikethis #ventilator #trach #lifesupport #intestinalfailure #respiratoryfailure #mito #eds #mcas #cvid

Gotta put this boy in his place again. He just never seems to learn his lesson! 🤷‍♀️ #teamtricia #bacteremia #fungemia #candidemia #sepsis #icu #terminallytricia #intestinalfailure #mcas #eds #mito #cvid

Replying to @ambernichole8014 Here’s a little dancing draft to hold you over until I’m back on my feet again. #draft #danceitout #danceon #dancingthroughthepain #dancingintherain #terminallytricia #teamtricia #lifesupport #tracheostomy #ventilator #intestinalfailure #respiratoryfailure #mito #eds #cvid #mcas

Mmmmm…girl dinner #girldinner #tpn #intestinalfailure #ivnutrition #ivfood #bacteremia #fungemia #candidemia #sepsis #ivantibiotics #antifungal #hospitallife #terminallytricia #teamtricia #mito #eds #mcas #cvid #