I have lupus. I started receiving infusions of Benlysta in March. Benlysta is a fairly new lupus medication and has done amazing things for some patients, but does have some adverse side effects. For me, the side effects really kicked in at the end of May with dizziness, headaches and nausea. I was unable to work and went on short term disability. As June and July wore on, I became more fatigued and weak. What I failed to tell anyone, even the people closest to me (Ron and my girls included), just how sick I really was. I was in denial because I wanted so badly for Benlysta to work for me. I will have to say that it did relieve my arthritis pain, chest pain and pleurisy.
Some of the details of what happened next are fuzzy, but here's what happened as I remember and as I have been told. I was getting weaker on a daily basis. I was always thirsty and was having to go to the bathroom every 1 1/2 hours. Since I couldn't walk anymore, Ron was carrying me to the bathroom. My poor husband. Sometime during the first weekend in August, I became delirious and was having hallucinations. I don't remember that weekend at all. On Monday the 6th, Ron took me into my doctor's office and he prescribed Prednisone (a steroid) for me and also gave me a shot of depomedrol - another steroid. This was in addition to a long list of medications I was already taking...Plaquenil - for lupus; Gabapentin - for pain; Premarin - hormones; Dexamethazone - a steroid - for dizziness; Amlodipine - for blood pressure; Folic Acid - supplement; Ambien - for sleep; Ativan - for anxiety and sleep; Zofran - for nausea; and Nystatin - for thrush.
Ron took me to the ER at UCSF Medical Center. I don't remember being in the emergency room, but once the doctors started trying to figure out what was wrong with me, things appeared very serious. My blood sugar was 853 - the normal range is 80 - 120. I was found to have a severe urinary tract infection that had gotten into my blood stream. I was admitted to the hospital and shortly thereafter, had a seizure. I had a second seizure that was witnessed by the doctors and unfortunately, my girls. I was transferred to Intensive Care and during that 5 days I had many diagnostic tests - CT scan, MRI, bronchoscopy, EEG. I continued to be delirious, and had terrible hallucinations. Truthfully, I don't remember my days in ICU other than as a nightmare. I have been told that I said many outrageous things to several different people. Maybe it's a good thing that I don't remember that!
During the 17 days I was in UCSF Medical Center, I was visited by teams of doctors from many specialties - rheumatologists, endocrinologists, internal medicine, pulmonologists, infectious disease. It was determined that I had steroid myopathy (Cushing's Syndrome) as well as Type II Diabetes, PCP and Nocardia. The last two are encapsulated fungal infections in the upper lobe of my right lung. As I understand it, the steroids were responsible for most of what happened to me - they caused me to be immuno-suppressed which allowed the fungal infections to settle in my lung, caused the diabetes, muscle weakness, possibly caused the seizures, and probably caused my hair to fall out.
After 17 days in the hospital, I was transferred to St. Mary's Medical Center Acute Rehabilitation Unit where I stayed for 15 days. I received physical therapy, occupational therapy and speech therapy. I can't say enough about the quality care I received at both hospitals by the doctors, nursing staff and therapists. I feel lucky to be alive and so grateful for the love and support I got from my family. Ron rarely left my side and probably drove the doctors crazy with all of his questions, but he took care of me. Through the worst of it, I have visions of him being there holding my hand. jb flew in from New York and unfortunately I was out of it for most of her visit. Mandi and Beckie were there with me as well. I do remember each of them sitting next to me and holding my hand at different times. My sister, Stef, who is a doctor, flew in from Tucson and helped to take care of me. My cousin/sister Leah was at the house when I got home and cooked several meals that are now in the freezer.
I have been so incredibly overwhelmed by the love and support of my family and friends. I am still struggling with going up the stairs, but am getting a little stronger every day. I use a walker to move around the house, and am starting to be able to do more things on my own. I have MANY follow up appointments with several doctors thru September and October. I am looking forward to the day when things are "normal" again. I am determined to take care of myself from here on out and will never take my health for granted again.
I am sure that I have gotten some of the details wrong, but this is how I remember it. I am on the road to recovery. Great big patches of my hair had fallen out so I asked my friend Denise to cut off the rest of my hair. I still have a "moon face" due to the steroids so together with my bald head, I am quite a sight! Everyone is being very sweet, though, and I have a big assortment of hats to help camouflage my head.
So, that's my story...
