Jewel's Story



My story started back in 2002, during a band competition in Miami, Florida.  I was just 15 years old, going on 16, and I discovered swelling in my abdomen, my legs and my feet.  My parents thought I'd just been "marching too hard" during band practice, and that all I needed was rest.  I quickly discovered that rest wouldn't solve much when in January 2003, after the band competition, I woke up with a swollen face. My parents had no idea what was wrong so I skipped school that day to go to the doctor.  One month later, on my 16th birthday (February 14, 2003), two nurses sang happy birthday to me while was resting in a hospital bed at Inova Fairfax.  A week after that, my kidney doctors gave me the confirmation:  I had kidney disease.

The question I get all the time:  how did you get kidney disease?  Unfortunately, not all things in life have an explanation.  And the doctors, being that there is no cure for kidney disease, couldn't give me one either.  Some say the disease may have been triggered by a viral infection like strep throat that went untreated.  But no one knows for sure. 

I went through treatment for a year and a half to bring my disease into remission, where I was no longer showing any symptoms.  I entered remission in 2004, and was able to experience college, studying in Mexico, traveling, getting my first job, and moving out of my parents' house, and getting engaged to my boyfriend of nearly seven years, symptom free.  However, with no cure for kidney disease, my kidney function continued to gradually decline.

In November 2012, six months into planning my wedding, my kidney doctors advised me to go on the waiting list for a kidney transplant.  By that time, my kidney function had fallen to 11 percent. Once I was added to the transplant waiting list, I had several people step up to be evaluated as donors.  My sister, my fiance Ben, and my dad were all candidates.  My sister, who we all thought was a sure fit, was not allowed to donate for genetic reasons.  And we learned that Ben and I do not have the same blood type.  I started making preparations to begin peritoneal dialysis, when my kidney function was at 7 percent.  When kidney disease patients enter End Stage Renal Disease, there are only two solutions to keep the patient alive:  a kidney transplant or dialysis.  

I had a minor surgery have my PD catheter placed, and was scheduled to start my training, when my transplant center notified me that my dad had been approved as my living donor. Kidney transplants from living donors are about 97 percent successful.  

On May 3, 2013, I had my kidney transplant at Inova Fairfax Hospital, in Fairfax, Virginia, about six weeks before my wedding.  And thank God, it worked!  My dad's and my recovery went really well, with few issues, and we both returned to work.  

And I got married six weeks later, and my dad gave me away!  It was the perfect ending to the best and worst year of my life.

For more information on kidney disease The Kidney Foundation.