Friday, May 14, 2010


Our only daughter, Amanda, and her little family are walking to raise money for the National Kidney Foundation. Here's the reason why:

Amanda graduated from Utah State in 2004 and came home to Maryland to find work. She found a job at the company owned by a member of our ward, and once her benefits kicked in, we encouraged her to get a good, thorough physical.

I really need to back up here because right after Christmas, as she headed towards graduation, the parental mantra was, "You need a job with benefits." Why? For months I had felt an urgency on this topic--that something big was coming, and she would need to have good insurance.

A few days after her physical she was called in to review her lab results. We didn't think too much about this since she had several other serious but under-control medical issues that made her health more complicated. And since she was now 24, she was her own advocate.

I was in my car when that chilling call came in. She sent one to her father as well. "You'd better come up here." End-stage renal failure was the ultimate diagnosis after days of testing--extensive urinalysis, kidney biopsies, and blood work. We were beyond stunned. My husband and I each had a marker that left Amanda genetically pre-disposed to kidney failure.

Amanda explains:

In 2004 I was diagnosed with an auto-immune disease called IGA nephropathy. By the time I found out, I was already in chronic kidney failure and was told I would need a kidney transplant to live. It was overwhelming and devastating news to receive being only 24 years old. I had just found the man of my dreams and was looking forward to a life with him, filled with kids and joy. This dream seemed to be falling apart as I sat across from my doctor and learned this devastating news. Before the news could even sink in, my mom said she would be the donor. From that second on she endured test after test and the waiting game began. My sweetheart, Nick, stood by my side and proposed to me on October 20, 2004 - just one day after hearing the news. We went on and planned our dream wedding and waited for the phone call that would save both our lives.

There are so many miracles and tender mercies attached to our family's transplant story. And it is a family story. I was never prouder of all my family-- my husband, my children, my daughter-in-law, my grandchildren who made us laugh when we were bereft of joy, and of course, my darling Nick. But Amanda was the hero here, not because she wasn't afraid, but because she always took her fears to the Lord.

The feelings are still a little raw, a little close to the surface. We've tried to remain private about our experience. Amanda didn't want to be "the transplant lady" or to have people aggrandize her courage. She's opening up about it now because she realizes how seeing someone with such a positive outcome would have bolstered us during the darker hours. So someday we'll write our story and share it so those who also face a devastating diagnosis can have hope that the Lord does not leave us alone in such times. We felt him with us, sending us help, walking with us, tucking us in at night when we could barely go on. We leaned on prayer, on the temple, on the Priesthood. We were held up by the faith of mortal angels who fasted with us, prayed for us and offered to serve us in countless ways.

Again, from Amanda:

I hope that by sharing my story, others will find hope in their darkest hour. I hope that they will see that there is not only life after transplantation, but one that is full of joy and happiness. I am approaching my five year anniversary and have a 15 month old son that I carried healthily to full term and I will be delivering our second child, a baby girl on the very day of my fifth transplant anniversary. So, on May 16, I will walk in gratitude and for those who need hope. I am walking to help save someone else's life because my mother saved mine!

We realize how very blessed we are, but let me say to those who face transplantation, there is reason for great hope and joy! And to those who consider being a kidney donor--Please do!

For those who would otherwise like to support kidney patients awaiting a miracle, please consider donating to Team Long as Amanda, Nick and little Brady walk to show gratitude for their blessings.

No comments:

Post a Comment