News 4 Investigates: Waiting for lungs - KMOV.com

News 4 Investigates: Waiting for lungs

Posted: Updated:
Kelly Wever has been waiting more than 3 years for a double lung transplant. Credit: KMOV Kelly Wever has been waiting more than 3 years for a double lung transplant. Credit: KMOV
ST. CHARLES COUNTY (KMOV.com) -

Imagine struggling to breathe.

A St. Charles County woman faces that reality on a daily basis.

Kelly Wever of Defiance was diagnosed with cystic fibrosis as a baby, today she needs a double lung transplant. 

Wever rarely leaves home, and needs the assistance of an oxygen machine to breathe. 

In 2013, her name was listed for lung transplantation with the United Network of Organ Sharing known as UNOS.

According to an UNOS spokesperson, the average wait time for lungs is 120 days. Wever has been on the waiting list since June 20, 2013.

"Here I am 3.5 years later still waiting. Now my health has become unstable and diminished. It's looking like I'm getting short on time, that's what my doctor told me," said Wever. 

Lung recipients are scored on a scale between 0 and 100. The patients in the most dire need for a transplant receive a higher score. Wever scores a 36, but she adds, "I am a unique case, that's a quote from my doctor." 

Wever's system has an elevated number of antibodies. Doctors refer to patients like Wever as "sensitized." 

Dr. Stuart Sweet is a pediatric pulmonologist at St. Louis Children's Hospital. He's also the president of UNOS. Dr. Sweet is not Wever's physician, but he's aware of the challenges patients like Wever face. 

"The system is not designed perfectly to accommodate those patients with sensitization," according to Dr. Sweet. 

Currently, Wever's high antibody score is not factored into her overall rank on the waiting list. 

Wever tells News 4 her doctors are worried her health will deteriorate to the point where she needs a ventilator. If that happens, her overall rank on the waiting list will likely go up, but because her body is "sensitized" the odds of finding an appropriate donor in a timely manner might be jeopardized. 

Dr. Sweet adds, "the reality is far more patients are waiting for hearts, lungs, kidneys than there are donors to serve their needs." 

You can help by registering as an organ donor

Wever continues to pray for new lungs, and hopes someday the ranking system will change to better meet the needs of patients deemed "sensitized." 

As another holiday on the wait list approaches, Wever gains strength from her 7-year-old daughter. 

"I want to keep living, I'm not ready to die, and I hope that I get that call someday." 

Copyright 2016 KMOV (Meredith Corporation). All rights reserved

Watch News 4 Now

Mouse over player for controls · LAUNCH FULL PLAYER

Powered by Frankly