The Fine Line Between Hope and Fear
By Jessica Perkins
 
 
Stephanie Brown is one of thousands of people who wait impatiently for someone to make a life-saving decision on their behalf. Organ donation saves lives like Stephanie’s.
 

 

Imagine being 23 years old, just two months from college graduation, when you are diagnosed with a fatal kidney disease. It’s crucial to begin dialysis immediately, but the schedule for treatment doesn’t exactly work with a class schedule, so you’re forced to choose between finishing those final two weeks of college or staying alive.

Sounds pretty terrible, right? Well, that’s the story of Stephanie Brown. She is now 26 and fights for her life every day as she waits for a kidney donor match for a transplant. Stephanie walks a fine line between hope and fear, each day wondering if one more person will join the donor list. She hopes every moment to move closer to the top of the recipient list.    

Stephanie is suffering from a rare kidney disease called Focal Segmental Glomerulosclerosis, also known as FSGS kidney disease. FSGS creates scarring on the inside and outside of the kidneys. When kidneys stop functioning properly, they stop filtering toxins from the blood stream. This leads to a host of health problems that cannot be remedied without replacing the diseased kidney with a healthy one.

In Stephanie’s case, it was not until she became pregnant with her son, Blane, that her doctors began to suspect that there was something wrong. By that time, she was seven months pregnant. She had to begin dialysis immediately, but in order to do that she had to deliver her baby prematurely.

The next several months created an emotional hell for her family, as they watched her health continue to decline and prayed that her baby would survive. Blane was born weighing only three pounds, four ounces. He was in critical care as his mother began her treatment.

Today, three years later, Stephanie balances her days and weeks with hospital stays, blood transfusions, and struggles to maintain a somewhat normal life for her now three-year-old son. Stephanie is too weak to drive a car and requires a cane or walker most of the time.

She faces the battle of emotions and physical pain that come with a chronic illness, while her family continues to hold on to the hope that someone will donate a kidney that Stephanie’s body can use.

“Some people don’t realize that you can donate organs while you’re still living. The risks associated with a donation from a live person are less that those associated with using an organ from a someone who has died,” says Darlisa Brantley, Stephanie’s mother.

As Stephanie is in and out of the hospital frequently, receiving a kidney from a live donor would ensure that she was able to undergo the transplant at a time when her body could readily accept it.

Stephanie is among others in the region also awaiting transplants. In fact, in the United States, a new name is added to the list of those needing organ transplants every 10 minutes, and, sadly, nineteen people die every day just waiting. *

The statistics are heartbreaking and education on the subject has been limited. Many people are not aware that things such as tissue and corneas are also needed.

“After my father passed away a few years ago, he was unable to donate any major organs due to complications. But donations of other kinds were still able to be made,” said Kijsa Housman.

“For several months after, our family received letters from the New England organ bank telling us how his donation of skin and corneas were being used to bless several people, both young and old.”

Part of the battle for most patients awaiting transplants is the anxiety that comes with waiting for something that might or might not happen. As everyone around them continues to live their lives, patients often struggle with the loneliness that the isolation of their disease thrusts upon them.

“Your time with friends is limited and you can’t do all the things that you’re used to doing. People eventually stop inviting you,” said Carson Emmons Smith. “People don’t mean to hurt you; they just don’t know how to react.”

Carson was previously on a list to receive a double lung transplant. The 25-year-old still suffers from Pulmonary Veno-Occlusive Disease (PVOD), a respiratory disease in the lungs. However, medical treatment and limited physical activity has helped prolong her life and a transplant is no longer needed at this time.

It is also the families of patients who suffer.

“It’s like the world as you know it has come to an end. Every moment is a nightmare,” said Martha Emmons, Carson’s mother. “For us it was the caring people in the Paducah community—friends, family, strangers—that made such a difference,” she said. “We were so fortunate to have people here to help lighten our burden.”

For every story that ends on a happy note, there are just as many that don’t end well. The conclusion of Stephanie’s story is not yet known, however, she has to plan for the worst and worries about her son’s future without her.

“Blane knows there is something different about Mommy. I would like him to have a good life, so I have made a will and planned arrangements for him, just in case,” said Stephanie.

It doesn’t seem right for a 26 year-old to already be planning for death, but that’s Stephanie’s reality unless someone donates a kidney that her body can accept. To be added to a donor list for Stephanie and other patients, you can register with the University of Kentucky’s Transplant Center in Lexington, http://ukhealthcare.uky.edu/transplant, or Vanderbilt University’s Transplant Center in Nashville, http://www.vanderbilthealth.com/transplant.

NOTES:

* US Government Information for Organ and Tissue Donation and Transplantation http://www.organdonor.gov/whydonate/index.html