When my daughter Marissa was 12 years old, she had to take a urine test for school athletics and they found blood in her sample. A Fort Wayne specialist ran several tests to try and find the cause, but couldn’t. Eventually, she was diagnosed with a genetic disorder called Membranoproliferative Glomerulonephritis, also known as MPGN type ll.
Initially we were told she could not have a transplant, but eventually we found a hospital out of town where several patients with her condition had received transplants. We were then given a list of nephrologists in Fort Wayne to contact to treat her. She had to start dialysis at the age of 15. It was rough, with school trying to have a normal life.
Marissa had her first transplant when she was 17. When we "got the call" we couldn't believe it. We only had a few hours to get to the hospital. I remember the surgery took longer than expected, but it went great. The kidney was making good urine.
Things went well until a year later when the autoimmune disease came back and attacked the new kidney. She had to go back on dialysis. She had her second transplant at the age of 22, almost 5 years to the day after the first.
We celebrate two birthdays for her; her birthday and her new kidney birthday, and soon we will be celebrating this kidney’s 13th year!
We have not met either of the donors’ families. Marissa wasn’t ready for that. We felt guilty that someone died so she could have a "normal life", until my brother-in-law died a few months after Marissa's second transplant and his donation helped eight families! We did receive letters from the recipients, which helped bring closure and helped us realize that we shouldn't feel guilty, because it does help the family left here on earth know that something good can come from something bad.
We’ve seen God's hand in many areas during Marissa’s illness. She is a very strong person, and this health issue has helped our family realize what is really important in life. We try to remember not to sweat the small stuff. You never know when this will be your last day, so make your days count. She had a great impact on many of her teachers, coaches and friends. She persevered and, most of the time, kept a positive attitude.
My daughter and I have volunteered for Indiana Donor Network for 12 years and love to educate people about how organ donation can make a difference in people’s lives! You can give your last gift on earth by becoming a registered donor.
April is Donate Life Month and we can’t think of a better time to consider signing up to save others. For more information, or to become a donor, review this Donor Registration form.
