Posted 11/6/2016 8:08 PM (GMT -7)
Hi Everyone. I'm providing you with a recap because my psychological demons refuse to let me vent without justification. It took 2 years of being sick before I had the Systemic Lupus diagnosis bestowed upon me. I went thru the usual med routine along with flares. I ate for comfort and gained 100 pounds. Decided to have gastric by-pass surgery (seemed like the thing to do at the time), but when it became time to eat my stomach closed for business- literally. I barfed a few days and it being the weekend, went to the ER and was admitted. Long to short, I caught pneumonia, but my attending doc didn't catch it in time. Rushed to ICU, induced into a coma and on a ventilator for 3 weeks. Hubby was called twice to come say his goodbyes.
Prior to lupus I was a runner and swimmer= good lungs. Survived, but when coma meds were removed my coma remained. I awoke (I was told) several days later. I was sent to long term acute care and have no memory from mid Jan that year until March 31. I asked to go home and my solid rock of a Hubby set up my feeding pump (stomach still closed except for a pinhole) every morning before work and I infused the rest of my IV meds. Quickly the pinhole closed and I had 13 endoscopies to allow saliva to drain before a gastric surgeon agreed to do a reverse by-pass almost 1 year exactly since my ER visit. I was feed TPN (liquid nutrition thru my veins) for 1 year. Did not eat for 1 year. Moral: don't get a gastric by-pass.
Regardless, I continued feel like death and was in ICU a couple more times. One of my docs was born with an autoimmune disorder and said she could get me in to see her rheumy who found my body did not produce enough IgG (1 of things needed to fight infection) so he sent me to an infectious disease doc who started me on IV infusions of Gammaguard (IVIG) monthly. My rheumy started me on IV Benlysta. I tried driving myself to these events, but I wrecked my car so now Hubby drives me. (He just said, "Say hello for me"). I spent 6 months in bed adjusting to these wonder drugs.
One Sunday I get huge doses of IVIG over 4 hours, the following Sunday it's Benlysta, about 2 hours. I had a port inserted because my veins quickly said enough of this crap. LOTS of other things have happened, but I must leave room for my vent. I have not been hospitalized since starting IVIG, but I do continue to get infections. Four weeks ago a sinus infection took hold and I was given antibiotic injection and oral. Cool started to recover, but Hubby brought home a cold that for me became another, nastier, painful, thick, gross sinus infection,chest cold, and more antibiotics Had to reschedule Benlysta (it kills white blood cells) and get my IVIG last Sunday. I HAVE BEEN IN BED FOUR WEEKS except for medical appointments that my Rock and Historian made sure I attended. Today was Benlysta. While I was getting ready, I broke down and cried with all my heart. Nuff said.
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry