'5 With 6' Success Story
I love trying to figure out what personalized license plates say. It’s like a mini puzzle right in front of you. Our family is the one in the minivan with the license plate that says “5with6”. You see, there are 5 of us in our family and we only have 6 kidneys between us.
Our oldest daughter, Christal, was one when she was diagnosed with “idiopathic (cause unknown) kidney disease and heart disease”. We were in and out of the hospital for five years, having multiple surgeries which included: double nephrectomy, g-tube placement and removal, peritoneal dialysis tube placement and removal, open heart surgery to remove her pulmonary valve, pulmonary artery stent placement, multiple angioplasties, and various other minor surgeries. The biggest surgery was when I donated my kidney to Christal when she was three.
After some minor setbacks (mild rejection) and medication changes, Christal’s kidney has been stable. This doesn’t mean she is without struggles medically. Being immunosuppressed has contributed to Christal dealing with pneumonia, E. Coli urinary tract infections, kidney infections, many sinus infections and abdominal migraines.
Despite all of this, Christal is now a senior in high school, on the swimming and cross-country ski teams, maintains a 3.6 grade point average, and is one awesome babysitter. Christal has been accepted to Pacific Lutheran University in Tacoma and is planning to pursue a nursing degree.
Our third daughter Amanda was born when Christal was 9 and our middle daughter, Jenna Kate (the only one in the family with 2 kidneys now since she doesn’t have the disease), was 3. I knew the minute Amanda was born that she had the same thing that Christal had. With tears in his eyes, our pediatrician entered the room with the news when Amanda was 6 days old. Richard looked at me and said, “We can do this!” I knew he was right, but my heart was broken. To have to watch your child suffer multiple tests, blood draws surgery and pain was almost too much to bear. I am so lucky to be blessed with such a strong and dedicated husband and partner.
Due to a new genetic test, we were able to diagnose both girls with a type of genetic nephrotic syndrome. My husband, Richard, and I both have the same gene mutated on the DNA chain which causes the kidney/heart disease. This kind of kidney disease causes their kidneys not to hang on to enough Albumin, the protein that keeps your fluid in place in your body.
Thus, the girls had to have both kidneys removed, and be on peritoneal dialysis for a time before getting the transplant in order to “remove” the kidney disease from their bodies. Since we were so well versed in this whole process, we were able to hold off Amanda’s transplant because she was on a low sodium/protein powder supplemented diet for years.
Amanda received one of Richard’s kidneys when she was four. She has dealt with many of her own medical struggles: pneumonia, borderline rejection, scarring of her kidney, and a constant worry of cancer that is caused by the EBV virus she carries in her body.
Despite all of this, Amanda is now in third grade and loves basketball, volleyball, swimming and babies.
Words of wisdom from a “kidney mom”: YOU are your child’s most vigilant advocate. Don’t ever stop letting people in the healthcare industry know which parts of the process are difficult or sometimes even impossible. Be responsible and follow through because not everyone else does. Teach your children that while life is not always fair, it is precious and enjoyable. Teach them to be brave and strong. Teach them to never give up. Show them they can achieve ANYTHING no matter how hard it might seem.
While I would never wish our story on anyone, it is our story, and I am so proud of how all three of my beautiful daughters are turning out. “5with6” fits us perfectly!