Kelly's Lupus Survivor Story

I had already been diagnosed for several years before my 52 days ICU stint. I was officially diagnosed in March 2003 (systemic & discoid). I am only 24 years old but, I was 23 when this all occurred.

Truthfully, I was feeling fine until a couple of days before my 52 day ICU stay. I was running a temperature of 103 for 4 days and I didn't really have an appetite (I was barely eating; the smell of food would make me nauseous). Bottom line, my doctors summed it up "my whole ordeal" to my Cellcept use and a flare. My use of Cellcept is what contributed to my stroke. I had fluid in my cerebellum and I had to have intensive surgery and a shunt brain drain.

I have really only been hospitalized 3 times due to my lupus ( May 2004…….4 days, September 2006…….12 days and my extended stay in June 2007) My doctors contribute my "recent health obstacles" to my use of Cellcept ( I was on this medication from March 2003-June 2007). I was on three 500MG tablets daily of Cellcept. Basically, since it's NOT widely used in lupus patients (mostly transplant patients), you don't really see a lot of information about individual experiences. I took 2 pills in the morning and 1 pill in the afternoon, 1500 MG.

When I was talking Cellcept, I had a fair experience, I cannot blame ALL of my side effects on the drug, I was more focused with working and complete my Master's than going to my doctor regularly (I WAS PARTLY AT FAULT FOR MOST OF MY SEVERE MEDICAL ISSUES).

At first when I was in the hospital I was taking 100 milligrams (IV) of prednisone.

When I was on Cytoxan for that short period of time, my doctors recommended that I stay on it for longer but, I would be sick for 3-4 (vomiting when I did eventually eat) days after my treatments so, I refused anymore treatments with the support of my family after I was "stable". I only received 3 treatments from June 2007-October 2007. I also had http://en.wikipedia.org/wiki/Plasmapheresis treatments.

I also had speech and physical therapy when I was in inpatient rehabilitation from the time I was discharged from the hospital ICU unit in August 2007 until October 2007.

No, I don't work, truthfully I can't work. I need to walk with the assistance of a walker. I have not driven in a car by myself since May 2007. I still have a valid driver's license and my husband ( We had been dating for a little over a year before I was I diagnosed. ) does let me drive occasionally when he is in the car with me. I am still with in a going battle with disability (that's a long exhausting story in it self). I have physical therapy 3 times a week and speech therapy twice a week. I am definitely much better than I was this time last year but, I am not 100% there.

Angie's Lupus Survivor Story

I am a 42 year old single African- American mom currently battling fibromyalgia, and adjusting to disabilng NPSLE -neuropsychiatric systemic lupus in a severe form involving central nervous system complicated by APS(antiphospholipid syndrome) that leads to chronic DVTs (blood clots). Here's my most recent anecdote of survival. Having given up ambitions of a career in medicine to live on disability benefits for the last decade, I was so excited to be in remission and starting a new job in June 2004. My dreams were defered again by a very sudden and aggressive attack with hemolytic anemia reducing my blood cell counts to 10% and shutting down my pancreas and liver. I narrowly escaped death. I contribute my survival to my faith in God and his grace to allow me to live in order to to raise my teenage son, who has no one but me. Once the crisis was over, I was completely paralized by the muscle atrophy of weeks of immobility in the hospital bed. Once home I quickly rid myself of walker and potty feeling euphoric from the high doses of IV steroids. Before the completion of a 6-month course of chemotherapy Cytoxin, I developed shingles in two quadrants of my face and relentless neuropathic pain. The side-effect of swollen feet kept me out of shoes and caused DVTs in both legs to be dangerously overlooked. A Greenfield filter was implanted to reduce the potential for blood clots to travel silently upstream causing pulmonary embolism and death. Before I could rid myself of the home nurse and port-a-cath, I was back in ICU with life threatening septiciemia, a systemic infection of my blood thats often the cause of death for lupus and cancer patients.