Tina Knoll
Appearances
Nobody Should Believe Me
S03 Ep07 RERUN: Trial of the Century
Unfortunately, things got complicated on Tuesday, 11-17-15. My blood work came back bad. Potassium, magnesium, protein levels, and HGB were low. And the worst of all, my cortisol level was zero. I was back in adrenal insufficiency. That was really the worst possible news I could receive this morning.
Nobody Should Believe Me
S03 Ep07 RERUN: Trial of the Century
Due to high risk for complications from adrenal insufficiency, including death, my ketamine coma got postponed for another day. I had to be re-evaluated by Pete's ICU doctor, who then consulted Pete's endocrinology for more brain knowledge. This disease is very rare and especially more rare in children. So there are still many unknown phenomena.
Nobody Should Believe Me
S03 Ep07 RERUN: Trial of the Century
The doctors are still learning more about RSD each day from each RSD case they get. My case will help other RSD patients in the future. And the hope is that maybe one day the FDA will approve ketamine coma in the U.S. It is really sad for American citizens to go out of the country in Mexico to receive this type of treatment.
Nobody Should Believe Me
S03 Ep07 RERUN: Trial of the Century
So far, I am the youngest child in history who has developed severe generalized RSD in very short period of time. And I am the first youngest child in history who is going to be placed in high dose ketamine coma. It's my last and only chance for better quality of life.
Nobody Should Believe Me
S03 Ep07 RERUN: Trial of the Century
getting rid of pain, dystonia, allodynia, and maybe a chance for being able to stand or walk one day again, this procedure is very high risk in my complex case due to the fact that I have immunodeficiency and very poor nutritious status and now very severe adrenal insufficiency.
Nobody Should Believe Me
S03 Ep07 RERUN: Trial of the Century
I was told today I am high risk patient for developing infection sepsis during the coma, difficulty weaning off the ventilator after coma, needing blood transfusions and a total body failure, death as a result of adrenal insufficiency and other complications. Despite the risks and complications, there are several good things going for me right now.
Nobody Should Believe Me
S03 Ep07 RERUN: Trial of the Century
My young age, very early RSD, CRPS diagnosis, hundreds of angels watching over me, and God working through the doctor's hands and brains to get me a remission. I am hoping for a miracle ketamine coma! Exclamation point, smiley face.
Nobody Should Believe Me
S03 Ep07 RERUN: Trial of the Century
Last night was really rough for me. My temp went up again. I became more tachycardic and restless. The sputum gram stain came positive, so they're going to continue IV antibiotics. Despite continuous high doses of ketamine, Versed, and Presidix IV, plus extra doses of ketamine slash Versed slash Propofol, I was still waking up at night every 20 to 30 minutes.
Nobody Should Believe Me
S03 Ep07 RERUN: Trial of the Century
I was very restless all night and managed to tongue out about three inches of OGT. Ketamine gives me magical powers and I acted like I was a super girl. Today is coma day three, yay. I feel better today after Dr. Cantu increased my ketamine infusion to five milligrams per kilogram per hour. He also increased my Versed drip to 4 milliliters per hour, Presidex to 3.8 milliliters per hour.
Nobody Should Believe Me
S03 Ep07 RERUN: Trial of the Century
He was also kind enough to increase the ketamine extra boluses to every one hour on top of Versed boluses and Propofol boluses. I have very high tolerance for drugs. If I was a horse, I would be comatose or dead already. But things are totally different when it comes to a girl with RSD. My metabolism is super fast.
Nobody Should Believe Me
S03 Ep07 RERUN: Trial of the Century
My mommy says I'm not a cheap date and my daddy's response was that he feels deeply sorry for the lucky man that will marry me one day. Smiley face.