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Informed Consent - Terry speaks on life with crohns pyderma gangrenosum and avascular necrosis...
Boyds, Maryland, U.S.A. 2/27/16
#InformedConsentTerrySpeaks
This video is dedicated to Terry & George and all of their amazing family and friends...Damn the Torpedos, Pop, full steam ahead, mates!
Chapter I - Opening - Examining Current Pyoderma Gangrenosum Wound Sites (0:00 - 5:06)
-Examing a pyoderma gangrenosum site
-Discussion of pyoderma gangrenosum
Chapter II - Crohn's Diagnosis (5:06 - 14:36)
-Early "treatment"
-Steroid induced avascular neucrosis
Chapter III - G.W. (14:36 - 18:09)
-More early Crohn's treatment
-Lethal doses of prednisone
-Joint pain
Chapter IV - INFORMED CONSENT! (or lack thereof!) (18:09 - 21:21)
-Risk of side effects (some crippling or deadly!) vs benefits of treatment
Chapter V - Ignorance, Incompetence, or Evil? (21:21 - 27:53)
-A "hell" of a clinical studay
-Walking on collapsed ankle joints for 12 months
Chapter VI - Prednisone & the Effects of AVN (27:53 - 36:37)
-"No, No, NO! This is NOT arthritis!"
-MALPRACTICE!
-"If I was informed, I would've said NO!"
-Get HARD COPIES of ALL of your medical records, file in Federal Court!
Chapter VII - Bi-lateral Ankle Fusions/Future Prognosis - "The Racket!" (36:37 - 38:49)
-Have
-Ileostemy
-Will need
-Knee replacements
-Hip Replacements
-Dentures
-"The Racket!"
-Make them dependent on "the system"
-Drain them of their will and resources
-"I've spent most of my adult life in and out of hospitals!"
Chapter VIII - Being Independent - Losing Independence (38:49 - 42:40)
-Pop's motto: "You take care of yourself!"
-"When you turn 18, I'm gonna break your plate!"
Chapter IX - Dad's Case vs. Terry's Case (42:40 - 47:05)
-ALL the medication were a waste!
-Terry's case "much more severe"
-Flare ups
-colonoscopies
-endoscopies
-lancings
-absceses
-fistulas
-The flavor of the month:
-Remicade
-Humira
-Enbrel
-Early Remicade infusion
-Analphylactic Shock!
Chapter X - NYE - Toxic MEGA Colon! - Other Surgeries (47:05 - 51:35)
-"You need immediate emergency surgery, or you will die
within 12 - 24 hours!"
-What is toxic mega colon?
-Other Surgeries:
-Gall Bladder removal
-Large Intestine removed
-Partial small intenstine removal
-"It's a hard life, it's painful!"
Chapter XI - Revisiting current P.G. sites (51:35 - 56:44)
-Identifying P.G.
-What to expect
-Bone loss - consequence of steroids
-LOL! "They pretty much gutted me like a fish!"
-"Treatment"'s a bit of a catch-22
-Wound care is critical - keep it clean!
-bandaids create rash around wound site
-56:44 - recording abruptly ends (out of battery? lol?)
Chapter XII - Promises in the Dark (56:45 - 1:00:54)
-"There is a light that never goes out" -Morrissey
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