I am: a woman, a wife, a mother, a writer, a friend, a registered veterinary technician, and vice president of my congregation. I'm also a kidney patient.
Looking back, I can see my symptoms started in childhood: weird rashes, fatigue and odd pains. At 16, I had horrible panic, couldn't concentrate in class, was constantly exhausted, and my hands started turning blue. I went from a straight A student and competitive dancer to a girl who was barely able to function over the course of a few months. Doctors called it depression, and started me on a carousel of horrible medications that never helped much, but instead had awful side effects.
At 17, I developed viral pneumonia after a tonsillectomy, and nearly died. I missed a lot of school and ended up getting my GED. Not walking with my class devastated me, but I was determined to carry on.
The next few years were spent in college classes, various jobs, care-taking for family members, and volunteering when fatigue didn’t overtake my life.
At 27, I developed C diff and aspiration pneumonia. I was bed bound for all of that spring and remember very little beyond losing handfuls of my long hair. I had what was considered an acute kidney episode of high creatinine, and was placed on Gabapentin to combat the neuropathy caused by the metronidazole needed to treat C. diff. The nephrologist at the time released me from his care, saying there was no need to follow up.
Fast forward 9 years. I earned a degree in veterinary technology, met the man of my dreams, and got married. We tried to start a family, but learned that my kidney function was faltering, and a pregnancy was highly discouraged with my condition. Blood work and a kidney biopsy in 2012 showed FSGS and an eGFR of 60. I was crushed. When I asked what I could do to slow down the progression, my nephrologist told me no medications or diet could help and that when my kidneys crashed, I could just get a transplant. Like it was so simple to find a living kidney donor. I did what I always did; I got on with life. I held three jobs (one full, two part time) and went back to school part time, trying to get ahead at work. The following year I was overcome with fatigue and hospitalized with chest pain.
My kidneys were crashing, and I finally was diagnosed with lupus. Through diet, lifestyle change, and finding a new job (just one instead of three) and a wonderful new nephrologist I managed to boost my function from eGFR of 21 to 42, but the damage was done. 20+ years of untreated, misdiagnosed lupus caught up with me. It was just a matter of time.
Last March, my nephrologist informed me it was time to get on the transplant list. I'm now at an eGFR of 18 and holding, and registered at Barnes Jewish Hospital in St. Louis. He's amazed I've done as well as I have, and has told me he really expected I'd be on dialysis by now. I’m still working, but had to go part time.
I'm stunned at the lack of information/plethora of misinformation surrounding kidney disease, transplant, and lupus. Some of my biggest help has come from those who have received the gift of life already.
My goal in being a Get Loud Advocate is to raise awareness on kidney issues, but also to show those going through it that we can absolutely still live good lives. I may have ESRD, but I'm so much more than the sum of my failing parts.
Jenifer is still searching for a living kidney donor as she gets closer to requiring dialysis for survival. Please read her kidney story and share her need. It is by making her need for a donor public that, together, we can help Jenifer get her life back.
Location: St. Louis, Missouri