Sixth months after I was diagnosed with Lupus, my sister, parents, and I all caught a 24-hour virus. They got better, but I having fevers. I was hospitalized for a weekend to find the source, but they were unable to find one. My fevers started getting better, and I was released.
By Wednesday, the fevers were back. I began feeling weak and unable to stand up. I couldn’t stay awake for longer than an hour or two and felt extremely dehydrated. That Friday, I was asleep in my bed when my mom came running in my room. She had been about to go out to lunch with a few friends but had a horrible feeling in the pit of her stomach. Her instinct was correct. My temperature had reached 103.5. She rushed me to the E.R., and by the time we got there my temperature had reach 104.2. The nurse had to take my blood pressure three times on two different machines because it was so low she thought it had to be an error. I was immediately put on I.V.s and monitors, and…to improve. I found out later that the 24-hour virus had triggered Macrophage Activation Syndrome, which occurs mainly in younger Lupus patients. This syndrome caused my immune system to go crazy and attack my organs very quickly. It was destroying my liver by the time I got to the E.R. If my mom had left the house that day like she had intended to, I would have had a stroke or a heart attack and most likely would have been dead by the time she returned.
This all occurred a week before my 18th birthday.
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 on 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 any more 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.
I have SLE lupus, which it affected my kidneys. Hear is a little bit about my story with lupus: For me it was completely out of the blue! I was in the hospital in Nov of 07 with pneumonia and it was at that time the doctors noticed I was passing high amounts of protein in my urine. They did a series of tests and couldn’t find anything, so my family doctor kept an eye on things and sent me to a local kidney specialist. By Jan. of 08, I started to pass more protein in my urine and my creatinine number started to elevate. In Nov, my creatinine number was a .7 and by Jan. it was a 1.9. When the kidney specialist saw that he decided to have me get a kidney biopsy done. So I went to the hospital on Jan 28th so just an outpatient procedure, thinking nothing of it and by that afternoon I was getting admitted into the hospital and the doctor came into the room saying that I would be starting on chemotherapy the next day and high dosages of Predinsone (100mg). He told my family and me that I had lupus which affected my kidneys and that my creatinine number was a 3.9 and I was on the verge of dialysis. So to say the least I was scared to death! I went into the hospital feeling overall healthy. I was a little tired, but I just thought it was because I was working full-time and taking three classes in graduate school and doing an internship. I never thought I had a chronic illness!I spent a week in the hospital and that is when everything in my life changed. I had to quit grad school and my internship, and I was put on temporary disability from work. The doctors put me on cytoxan, and high dosages of Prednisone, along with 15 other different medications, Plaquenil is one of them. The prednisone has made me gain over 70 pounds within the past 7 months, and from the chemotherapy drugs I started to lose my hair. I am a very self-conscious person, so even these adjustments have taken a toll on me! As far as my hair, I have always had really thick natural curly hair, it was my best feature (in my opinion). So when it started to fall out in clumps, I decided to shave my head. That was scary for me, but it is starting to grow back in a little bit now and I am handling it alot better than I was.I am doing better now, my kidney function is around 50%, and my creatinine number is a 1.3. So I am very hopeful about the whole thing, (at least on most days) I will be honest with you, at the beginning I was devastated and very depressed. But I trust my doctors and I know one day I will get back to living as much of a normal life as possible.
A week before my fourteenth birthday I woke up with an unexpected black eye from no one knew only God. It last a week then i went to visit my mom in Franklin,NC and my nose kept bleeding and I couldn’t open anything without my hands hurting, and my feet were turning purple and blue from the cold weather and I was getting bumps on my hands. When I got back from NC I was sick so I then went to the doctor and my leg was swelled up and I showed my dad. It hurt so bad I couldn’t even walk on it. I went to the doctors for everyday for a week and finally went back to school on that Friday January fourteenth two thousand and five. I was at Caloosa Middle school when the school got a call from my dad saying that they needed to get me and to grab my books because Doctor Flores my doctor needed me there as soon as possible. So Mrs. Brewer came and got me and then took me up to my locker to get my books, I did what I was told and then finally it came out of my mouth ” Um, what’s going on here?” Then she said “Your dad called and he said that you are needed in Saint Petersburg as soon as you can get there.”
Finally my dad got to my school and said thanks to the teachers that helped me get ready and all. When we left Caloosa my dad told me he did not why they wanted me up there so quick and that he called my grandma Phillips from my moms side of the family. We got to my house and in packed a few things because I did not know how long I was going to be there. Then finally we left, and were on our way to Saint Petersburg.
I slept most of the way there until we stopped at McDonalds for lunch because none of us had eaten that morning or anything. After that we finally got to the hospital and went to the registration counter and got all set up and they gave me my room number which was room 370B southwest. Which meant I got the room closest to the window. But anyways when I got to my room my nurse came in and started asking me all these questions; I do not remember most of them. Then she took my blood pressure and it was 160 over 100. I was so scared I started to get tears in my eyes because I knew that my blood pressure was way to high for anyone. After that my doctors came in to see where I was hurting and all.
When my doctors left I settled down and called my mom to see were she was at and everything and then my dad and grandma talked to her. So then my grandma told me my mom was flying down tomorrow: I was so glad. Later that night I had to get an ultrasound on my leg to see if there were any blood clots: thank god there weren’t any.
The next day I had lots of blood work done and got my IV put in my left hand. My doctor suggested to me that I walk around so I listened to him by doing that as well as I played games with my grandma before she went and got my mom from the airport. Then my grandma came back and my grandpa was there as well as my mom and we all went into the game room and played rumikub. It was a very tiring day so I went to bed sort of early and I had no roommates which meant it was a very quiet night for me and my mom who stayed in the hospital room with me.
On Sunday most of my family came to the hospital to see me; so it was another tiring day for me. But then as I was just laying in my bed I overheard my parents talking and they said that my older brother who came up to visit me was in the emergency room; then my dad had to go back to Cape Coral because he had been with me almost for four days. So, my grandma stayed with my brother and my mom stayed with me.
I took a shower that night and I had accidentally got my IV a little wet so I had asked the nurse to retape it she accidentally pulled it right out and I was ordering me some food strawberries and angel cake and I was not ready for it who would be?. But anyways they ended up giving me a new IV but waited till the morning to do it and then they had also put me on my liquid steroids, but they put the new IV in my right hand so it was hard to write and stuff. Tuesday is when they had my kidney biopsy and it went good. One thing I was thinking was that no matter what happens its all going to come out to a solution for me and my family about my health.
Later that day my doctors came in to give us the information and this is what he said “Well, she has Lupus and the kidney biopsy went good but she has inflammation in her kidneys, and it is at a level four and there are six levels.” I was thinking I never thought I would ever get diagnosed with anything and the worst part was that I never even knew Lupus existed. Wednesday came around and nothing happened besides every three hours they came in to check my temperature and my blood pressure. That night at midnight I got my first round of chemotherapy treatment called Cytoxan or (cyclophosophamide). The chemo took four hours but the whole treatment took six hours. The next day I got my two pints of blood and was really tired afterwards. At 8:30 in the morning my doctor came in and told me that I was going home the next day; I was so excited I was ready to get out of the hospital. Later that day a college student came into my room asking if I was willing to answer questions for him and I was willing to so I answered the questions and then went back to bed. Finally on Friday at 11:30 in the morning I got discharged from All Children’s Hospital.
Every month I had to go back up to Saint Pete to get my chemo treatment I was always the first one there and last one to leave. I also had to get blood work done every month. So it was a very long six months. And it still is but I am off of Cytoxan and I am taking chemo pills. I take like ten pills a day but I don’t really care because I take them all at once. The medicines I am now on are- Prednisone, Enapril, Norvasc, Hydorxychlorine, calcium pills, Cellcept, Baby aspirin and Zoloft. I am doing good now I have not had one flare up since getting diagnosed and that is great. Well I hope you enjoyed reading this.
it started when i was 12, i was only a little girl with major goles in my life. i wanted to be the first female in the NBA. but then one night it all started with me having pains in my wrist and knee. i thought it was only because i had been playing soccer n’ had a big game that day. then that same night around midnight i woke up screaming and crying because the pain was so bad. well they thought i had “cancer” but two months later and after being in the ER every weekend i found out it was SLE.
about a few months later… i still had been dealing with alot of pain, it was so bad i couldn’t even go to school or walk or pretty much do anything. i had been in and out of the hospital months at a time. then one day the pain got so bad and they had me on a morphine drip, and that wasn’t even helping the pain. the doctors wanted to send me home to pretty much lay down to rest… more like pass away at home but my mother wasn’t having it. she found STANFORD MEDICAL CENTER and they had me on a plane with in 24 hours heading out there.
about two years later, i found out that the lupus was affecting my heart. i’ve had three open heart surgs. from it. and also in third class kidney failure. i’ve had six near deaths but i’m still living strong and now i’m 19 and trying to live a normal life. yes it still effects me here and there but i’ve learned to deal with it and not let it deal with me.
yes i do have lupus but lupus doesn’t have me. thank you so much for letting me get some of this out to the open and the world. if you would like to ask or talk to me about thing you can always write me an email [firstname.lastname@example.org] or even write me on myspace [myspace.com/duh_lil_princess].
Susan Wargo-Mohr of Binghamton: Susan Wargo-Mohr, formally of Scranton, Pa., and Ithaca, N.Y., passed away peacefully March 11, 2008 in Binghamton, N.Y. Susan was born October 21, 1959 in Scranton, Pa., daughter of the late Joseph T. and Lorraine Gilbert Wargo. A truly gifted Violinist, Susan’s passion for life and her “spunk” made her a joy to be around. Susan is survived by her loving daughter, Jessica Lorraine Mohr, Ithaca, N.Y., (Mike Hollenbeck); and her fiancée, Mark D. Terry, Binghamton, N.Y., and his daughter, Erin Ballas (Dustin), Johnson City, N.Y.; her brothers, Joseph T. Wargo, Jr. (Madeline), Richmond, Va., and Perry J. Wargo, N.Y., N.Y.; and her first husband, Timothy S. Mohr, Ithaca, NY. Susan graduated from Scranton Central High School, Scranton, Pa., and attended Ithaca College where she studied music performance and played in the string orchestra under Pamela Gehrhart. For over 30 years, Susan was a Violinist with the Northeastern Pennsylvania Philharmonic, B.C. Pops, and Binghamton Symphony; Susan loved playing Second Violin. Susan studied The Suzuki Violin Method at Ithaca Talent Education where she earned her instructor certification. Of her many accomplishments, her most memorable were her “gigs” with The Moody Blues, Olivia Newton John, Cab Calloway, Benny Goodman, and Tony Bennett. Her strength and endurance were an inspiration for all who knew her. She will be greatly missed. Susan’s family wishes to thank all of her many friends who lent their support during the challenges she faced.
A funeral service will be held 10:00 a.m., Saturday, March 15th, at The Thomas J. Shea Funeral Home, Inc., 137 Robinson Street, Binghamton, New York. Burial will be in Scranton at the convenience of the family. Friends may call at the Shea Funeral Home Friday from 4 till 7 p.m. In lieu of flowers, friends wishing may make memorial donations to the Lupus Foundation of America, or the Animal Care Council of Endicott, N.Y., in memory of Susan Wargo-Mohr.
I am a 52-year-old single African- American mom currently battling fibromyalgia and adjusting to disabling 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 Lupus Survivor Story.
Having given up ambitions of a career in medicine and biomedical research to live on disability benefits, I was really excited to be in remission and starting a new job in June 2004. My dreams were deferred 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 raise my teenage son, who had no one but me.
Once the crisis was over, I was completely paralyzed by atrophied muscle from weeks of immobility in the hospital bed. Once home I quickly rid myself of the 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 for months and caused DVTs in both legs to be dangerously overlooked. A Greenfield filter was implanted to reduce the potential of blood clots traveling silently upstream causing pulmonary embolism, stroke or death. Before I could rid myself of the home nurse and port-a-cath, I was back in ICU with life-threatening septicemia, a systemic infection of my blood that’s often the cause of death for lupus and cancer patients.
But I didn’t let that stop me. In my bedridden state, I went on to enroll in an online Web Development Certification program in Computer Information Systems. Before the 1-year program was over I began to develop severe and unusual neurological symptoms which plagued me with seizures and left me mute and unable to write. When I did speak it was complete gibberish, baby talk, or in a “West Indian” accent. I’m not West Indian! I developed paralyzing problems with short-term memory, concentration, and attention. Fortunately, I was always able to type on the keyboard, so despite my adult onset ADHD and dyslexia, I managed to make it through my courses.
By the time I had progressed in compensating for these neurological deficits and began tapering off the heavy duty lupus meds, I found out the chronic UTIs and flank pain was due to a golf-ball size kidney stone! Well, they decided to cancel the lathroscopic surgery for less invasive lipotripsy. Having sonic blast with no scalpel sounded good, but because of the size and hardness, the first blast just left me with 3 big stones instead of 1 huge one. These procedures went on for 6 months and because my Coumadin (blood thinner) wasn’t managed well, (Stopping and starting without heparin bridge), I developed a few DVTs on top of everything else.
It was during this chaotic time that I turned to the internet for information and support. Initially, I created a website with general information to share with friends and family. Next a blog which led me to meet other lupies. In about 2008 I created a Ning social site as a hub for fellow lupus bloggers to share and support. Just as I was getting that off the ground, I encountered another health crisis. Late one night after an ordinary, pretty good day, I had a sudden attack of pain so intense that I could not get off the bathroom floor. My dutiful son called 911. After a painful wait in the ER and several scans, I was told I needed emergency surgery for a ruptured colon. When I awoke I was so elated the pain was gone and happy to see my father and son by my side. I remember we even took pictures. It was quite some time before I became aware of this plastic bag attached on the left side of my abdomen. That wasn’t so bad as this gaping split through my navel down the center of my stomach exposing a few layers of my flesh with only a large piece of gauze laying across, not even taped.
Without ever having any previous GI problems other than constipation from pain meds, I was totally unprepared for the reality of having a colostomy bag. I was devastated. The trauma to an already weakened body meant I was back on my back again, requiring weeks of rehabilitation just to get up and down again. This was the darkest point in my illness. I had reached my limit emotionally, psychologically and physically. Still suffering neurologically as well, I just couldn’t solve another problem or make another decision. But I am blessed. I put my life in the hands of my father and best friends. With my son going to college soon, I made the decision to move from Memphis to a studio apartment for disabled in midtown Nashville where I’d have some independence being only a cab ride away from pharmacy, stores, restaurants and medical center.
While I waited on the 2 year waiting list to get in, I relocated to East TN to have my best friend’s support. As my mental and physical health improved, I began contracting web design projects. After Ning began charging subscriptions, I was honored to get a grant from WEGO Health to maintain our social network for another year. I successfully graduated my son from home school and got him admitted to the university of his choice. Life was good. One Saturday, a day after my first physical therapy session, I expected to be a little sore, so I didn’t worry about the discomfort in my chest each time I laid down. But that night, I had to sleep in the chair to get comfortable. Sunday morning, I was so rest broken I turned down a ride to church. By the evening, I had “self” diagnosed myself with pleurisy, a common secondary condition for lupus. Based on my previous experience I decided I could wait til morning. I figured I could have my best friend drop me at the ER to get a round of IV steroids and be done by the time she got off work. I didn’t worry about the EKG. They always do that. But afterward, a team of doctors came in with papers to sign for catheterization to check for blockage and surgery immediately afterward. Now I’m scared. Well, there was no blockage found, so I assured my best friend that it’s just pleurisy as I had originally “self” diagnosed. As we begin to relax, laugh and talk I felt little vertigo as if I was falling fast. My last words,”Raise me up.”
I awaken in a dark room, thinking it was later that evening on the same day. Wrapped up in a blanket in a chair in the corner was my son. How could he have arrived from college over 600 miles away so fast? Seeing that I was conscious he greets me saying,”So you finally decided to join us!” Perplexed by his presence, I ask how he did he arrive so fast. He explains he and other friends and family have been by my side for over a week while I had been on life support. At this point, I look down to see staples down my chest, evidence of the emergency heart surgery. After my last words in Kingsport ICU, I flatlined, “Code Blue!” Unable to be resuscitated, I was helicoptered to next larger town for heart surgery. Due to internal bleeding, I had 3 L of blood fill my pericardium causing a cardiac tamponade. The prognosis was so grim, that surgeons recommended my family come immediately for fear I would not survive. With their love, faith, and prayers, I awakened relatively pain-free and totally unaware of the trauma.
After another phase of rehabilitation, I improved and finally settled in my new studio apartment in Nashville. After 3 years I developed a large hernia in my colostomy surgical site in which most of my intestine was on the outside of the abdominal fascia that usually holds it in. After a couple of years, my lupus became stable enough to reduce my steroids and surgeons finally approved the very complex and dangerous surgery to fix a hernia and reversing my colostomy via two surgical procedures. The surgery went great but they discovered several large stones in both kidneys and I caught a MRSA infection. It took 3 months for me to get discharged for good. I lost over 30 lbs and it took months before I could keep much food down. This led me to my latest crusade for medical cannabis. I’ll refer you to my video for that story.
I reached the golden age of 50 this year, but I am healthier and happier than I was at 30. My medicine bag is a little less full and my lupus is under control with low doses of prednisone. I have successfully tapered completely off the 75mcg/hr fentanyl patches I had been using for over a decade. For the very first time, I am participating in the LFA Lupus Walk in September! I have resumed my career as a web developer full time and I am most excited about developing a new lupussurvivor.com to continue my mission of healing the disease through healing the mind, body, and spirit. Even on the unavoidable painful days, I try to find some joy in the little things that life has to offer because I know how blessed I am to be a Lupus Survivor!