Tori is a 17 year old who was diagnosed with Systemic Lupus Erythematosus (SLE) which is the most common form of lupus and is what most people mean when they refer to "lupus." Systemic lupus can be mild or severe.
Some of the more serious complications involving major organ systems are:
• inflammation of the kidneys (lupus nephritis), which can affect the body’s ability to filter waste from the blood and can be so damaging that dialysis or kidney transplant may be needed
• an increase in blood pressure in the lungs (pulmonary hypertension)
• inflammation of the nervous system and brain, which can cause memory problems, confusion, headaches, and strokes
• inflammation in the brain’s blood vessels, which can cause high fevers, seizures, behavioral changes,
• hardening of the arteries (coronary artery disease), which is a buildup of deposits on coronary artery walls that can lead to a heart attack.
Tori was 14 years old when she was diagnosed with SLE. She is an awesome & beautiful person inside and out. The following is Tori’s story.
On March 13 2009 the doctors found a DVT (blood clot) in her right leg. The DVT was as long as her leg, starting in her hip and running through her calf. She was having shortness of breath so a CT scan was performed and found she had a pulmonary embolus in her right lung. By the grace of God, it was very small which allowed the PE to pass through her heart and into her lungs without fatal consequences. It is very rare a child survives such an event. Most PE found in pediatric patients are found during an autopsy.
Tori was hospitalized one the same day to treatment of the DVT & PE. After a week of treatment, Tori began having more trouble breathing and after further testing the doctors discovered internal bleeding putting her in a critical state of care. At this point she was moved to PICU and the doctors implemented a new treatment plan which included stopping the coumadin treatment. Once Tori was better, one doctor compared her lungs to a colander.
On March 23, 2009 the doctors started a treatment called Plasmapheresis (plasma exchange) and on the next day started chemotherapy with a drug called Cytoxan all in an effort to get the lupus under control. Due to the blood loss, Tori had to have 4 pints of blood. All of this while trying to dissolve the blood clots with 2 injections a day with a drug called Lovenox.
After nine long days in PICU with some very scary touch & go moments Tori was able to move back to a regular room until April 2, 2009 when she was able to go home.
Tori completed her last round of chemotherapy on August 21s 2009. Since then, she has been hospitalized twice, once for dehydration from a stomach virus and once for precautionary reason due to a touch of the flu.
Today, Tori takes her daily medications orally including iummune suppressants and Coumadin, has lab work done bi-weekly, does her best to stay out of the sun and so far has not had any bleeding incidents. She has learned a lot about living with lupus and for now she is able to be a typical teenager (for the most part) and is enjoying a new normal life. She is a senior in high school. Today she is looking forward to Spring break, prom, graduation, the summer and heading off to college in the fall.
Tori saw God’s work firsthand many times while she was so sick and is very thankful for so many blessings He has given her.
While Tori is the inspiration for the birth of 28 Below Foundation, there are others. I have met a lot people who have been diagnosed with lupus and manage to live with the “wolf” the best they know how. I envision everyone with lupus banding together to raise awareness and support each other in any way we can. Like cancer, we can fight this and help each other live better quality lives!