The story of Stephanie
My name is Stephanie, I am 26 years old, I have been a healthy adult for the most part, no major illnesses except a cold here and there, my life changed forever in the beginning of December 2019, I had developed a lump on my right thigh, which was hot too touch, went too see a doctor who gave me a “courtesy” visit, she said it was a blood clot, and told me too ice it, I know that’s not what you do for blood clots, so I immediately went too a nearby hospital, where the doctor just did a visual exam, and diagnosed me of having “Cellulitis” I got sent off with some antibiotics, finishing my treatment of antibiotics, I noticed no change in this lump, and developed 2 more leading up too my buttock, the redness on my leg spread, and it was bruised as well, it wasn’t your typical Vasculitis rash, I went too the hospital again, where they ran a CT scan, Ultrasound, bloodwork, and gave me a dose of IV antibiotics, and sent me on my way with another prescription of antibiotics stating it was “Cellulitis” my family assessed it and it looked like it was clearing.
On December 23rd we were having a gift exchange at my grandmothers when the pain began in my leg, so I went too one of the top hospitals here in California, were I stayed for about 4 days, they also treated me for “Cellulitis”, and one of the doctors there wanted too cut my leg off, one of the residents wanted too do a skin biopsy but the main doctor, said it was too invasive, my labs were abnormal, but I went sent on my way home with more antibiotics, it wasn’t until January 3rd when I coughed up about a cup of blood, and kept coughing blood, I saw my PCP, and she wrote me a letter too go too the hospital immediately, she didn’t want too wait, we knew something was wrong, I went back too the hospital, and was admitted on Jan. 3rd, of 2020, I can’t remember much from here until the 7th of Jan. where my worst nightmare came true.
I was going in for a broncoscopy, it’s a procedure in which they use too see inside your lungs, my oxygen levels were dropping below 90% so they explained the risks, and gave me an option too be on a mechanical ventilator or wait, I was terrified because I am a nurse, the patients I care for our bed bound patients whom have tracheostomies, vents., feeding tubes, I panicked, but I agreed too be ventilated… the procedure was done, and I was sedated, I dreamt a lot, I was alive, but I was “asleep”, I can hear my partner, my family, I knew they were there, eventually at least, I cannot tell you what day or time, I just knew they were there, and as I continue my story, all I can tell you is that this is from what my family talked too me about, because they were there with me through this nightmare, on January 10th I “coded”, my lungs contracted, and one of the doctors said “there’s nothing else we can do” my mother luckily being there, got on top of me, and fought for the doctors too do more, they already have done so much, but that’s when they turned my room into a operation room, and they put a machine called VV Ecmo on me. V-V ECMO. V-V or veno-venous ECMO, supports lung function primarily.
The surgeon will place the cannulae in a large vein only, usually in the neck. … The special cannula in one vein has two channels, side by side, allowing the ECMO pump to draw blood out through one channel and back in through the other. That’s the google definition of it. This machine was keeping me alive, it was allowing for my lungs too recover, it took 4 tries for them too remove it. Prior too this I left out I did have a plasmaparesis, and was diagnosed on the 10th of January with ANCA Associated with Vasculitis, PGA, or formerly known as Wegenners Granulamatosis, it’s rare, it sucks, but I won’t let it define me, I will fight it, and I can only hope for it too go too remission.
After the ecmo was removed (I don’t remember any of this) I was dreaming crazy, beautiful, and scary things, I was left with the vent., and on the 22nd of January I woke up and self extubated, meaning I took out the tube that’s going down my throat, and I’m thankful too the amazing nurse, who was by my side as I was panicking, as she remained calm, and made sure I was ok, I’m grateful I didn’t damage anything, and just remember everyone looking at me, I felt like a fish out of water, I felt weak, tired, confused, it felt like months, but I’m here now, I’m breathing on my own, I’m eating on my own, drinking on my own, walking on my own, I don’t look sick, but I am, and I continue too learn about my condition, and meet some awesome people, who have shared their stories with me as well, it has given me hope, and all I can say is how grateful I am for the nurses and doctors who saved my life, who have been there for me throughout all this, they try too give me credit, but they saved my life, my family saved me, I’m just grateful too be able too be here today, too be blessed, and share a part of my story, and now I just want too help people, I want too make a difference, I don’t know everything but I know a lot, and I continue too learn about my condition, so whatever I can do too help, count me in.Â