In Retrospect

Lupus just kind of gradually took over TP's body - it happened over a period of months without us being aware of the insidious and silent destruction that it was wreaking on my daughter's kidneys.

It started out with swollen ankles at the beginning of her sophomore year. No big deal - I thought it might be due to TP's cheerleading duties, or perhaps even her menstrual cycle. During the Christmas season of 2003, she wound up in bed for most of the two week school break. She came down with a cold, and it grew quickly into an ear infection, pink eye, a sinus infection, then the stomach flu, and finally, the regular flu. Her poor body just couldn't fight off all of these infections, and she slept continuously and ate little. Her eyes were sunken and her face was white - she looked so frail.

But, she recovered in time to get back to school after New Year's. She'd get tired quickly when cheering at a game, and her ankles would get swollen off and on. Again, I thought she was tired because she had been so ill over the holidays, and the ankles weren't swollen all the time, so I figured that she'd grow stronger as time went on. And she did, to a certain extent. She was able to keep up with her studies and her extra-curricular activities.

Her spring break coincided with her 16th birtday in March of 2004, and my husband's parents visited us. They commented on how much TP slept during the few days that they were here, and I just attributed her sleeping to just being a typical teenager and her hectic schedule. Then, in April, her ankles became even more swollen than before. TP was experiencing a general malaise that I had never seen before. So, I then decided to take her to our family physician. After taking some blood work and a urinalysis, he came back with a diagnosis - a kidney infection with a huge amount of blood in the urine (microscopic - we couldn't see it) as well as high levels of protein in the urine. He said he wanted to send her over to the hospital for an ultrasound, and he was going to send the bloodwork and urinalysis on for additional testing.

Okay, I thought - a kidney infection we can handle. She started on a huge dose of antibiotics, and we went home so she could rest. The ultrasound was scheduled for a day or two after our appointment with the doctor, and that showed nothing abnormal.

Our doctor called me with the results from the bloodwork and urinalysis and ultrasound when I was grocery shopping. He said that he wanted to do additional tests on Sara because he thought something more serious than a kidney infection was going on, but he wasn't certain what it could be. I don't like it when a doctor tells me things like that! He wouldn't even hazard a guess - but I suspect he had a couple of ideas, he just didn't want to share them with me. So, we had the additional tests, and I'll never forget the phone call I got from him that sunny yet cold April afternoon as I was taking the girls to their piano lessons. He told me that he needed to refer us to a kidney specialist as something was seriously wrong with TP's kidney functioning, and he wasn't sure what it was. What he did know that it was very serious, so the sooner we could get in, the better. He was able to set us up with a doctor the following Tuesday at Children's Hospital (it was Friday at that time), and he asked me to keep him informed. He has been our doctor for 15 years, so I knew he was very concerned. Of course, when I got home that evening, I did tons of research on WebMD and other health related sites. I certainly didn't like what I was discovering, and I tried to keep my anxiety level from peaking as I read more and more articles.

My next post will deal with TP's first hospitalization at Children's Hospital.

Here is a list of symptoms (found at www.lupus.org) which occur in in lupus patients (next to it is the percentage of patients in which the symptom occurs):

Arthralgia (achy joints) ~ 95%
Fever of more than 100 degrees ~ 90%
Arthritis (swollen joints) ~ 90%
Prolonged or extreme fatigue ~ 81%
Skin rashes ~ 74%
Anemia - 71%
Kidney involvement ~ 50%
Pleurisy (pain in the chest on deep breathing) ~ 45%
Butterfly-shaped rash across cheeks and nose ~ 42%
Photosensitivity (sun or light sensitivity) ~ 30%
Hair loss ~ 27%
Abnormal blood clotting problems ~ 20%
Raynaud's phenomenon (fingers turning white and/or blue in the cold) ~ 17%
Seizures ~ 15%
Mouth or nose ulcers ~ 12%

TP has had all but 3 of those symptoms over the past two and a half years, plus additional problems related to lupus which will be discussed later. The 3 symptoms I'm not aware of her having are Raynaud's pheonomenon, seizures (although she did have a febrile seizure when she was 18 months old related to a high fever), and mouth and ore ulcers. As a child, she was always spiking high fevers. She always had strong reactions to vaccinations - sometimes getting quite ill from them. She was diagnosed with anemia when she was in second grade, and would have nose bleeds frequently. Sometimes, when she'd be out in the sun and playing or working, she'd get sick to her stomach and throw up and get overheated quickly. So, it makes me wonder that if, over the years, her immunse system was slowly going haywire on her, until it eventually began attacking her kidneys.