Maylene family works to raise awareness for transplant patients

By EMILY REED / Special to the Reporter

MAYLENE – Maylene residents Robert and Kirsten Steele are working to raise awareness for the growing burden and expenses transplant patients and their families often face.

“I think there is not a lot of information out there for what all is involved in a transplant,” Robert Steele said. “Things such as what does having a transplant mean, the financial aspect of a transplant, how long will you have to wait for a transplant, and how do you become a donor if you are interested are all topics that need more awareness.”

In 2007, Kirsten Steele, who was 35 at the time, started her battle with gastrointestinal tract problems, which have been diagnosed as a rare condition known as gastroparesis, or “paralyzed stomach.”

The condition can cause individuals to either take a long time to digest food, or have food sit in the stomach and not digest.

In 2012, Kirsten had a gastrectomy, where her small intestine was connected to her esophagus, which led to further complications.

Two years later, Kirsten had a 10-hour gut reconstruction procedure, which was unsuccessful, and led to her being placed on total parenteral nutrition “TPN,” which is a way of supplying all the nutritional needs of the body by bypassing the digestive system and dripping nutrient solution directly into a vein, 18 hours a day for nourishment.

Due to the rarity of her condition, Kirsten travels from Alabama to be seen by a team of doctors in Cleveland, Ohio at the Cleveland Clinic, which specializes in digestive diseases.

“We have made several trips back and forth for testing and different procedures since she was first diagnosed,” Robert said. “We are currently waiting to hear if Kirsten has been listed on the transplant list, and once she is we will have to relocate. There are only six places in the nation that do intestinal transplants.”

Robert said once Kirsten receives an intestinal transplant the family will stay in Cleveland for an extended period of time as Kirsten recovers.

“One thing we have realized during this whole process is there are a lot of transplant patients and families carrying a growing burden of expenses,” Robert said. “It is not just medical bills, it is the fact that you might have to relocate for a while, and a lot of other factors that go into it.”

The Steele family is currently working with the National Foundation for Transplants (NFT) to help relieve the burden of expenses many families are facing.

NFT has been assisting transplant patients with fundraising support for more than 30 years, and donations allow NFT to provide transplant patients with financial support they often need, Steele said.

NFT is a non-profit 501c3 organization based in Memphis, Tenn., which provides patient advocacy, support services and fundraising assistance to organ and tissue transplant candidates and recipients nationwide, according to an NFT press release.

The organization was founded in 1983, and NFT assists more than 1,200 transplant patients who face financial obstacles to their medical treatment and care.

“We are hopeful that more people will learn about what transplant patients face,” Robert said. “There is not a lot of information available, and the more people know, the better.”

For more information about Kirsten’s journey, visit Keepkirstenkicking.org or to donate, visit give.transplants.org.