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CF patient is grateful for every breath she takes


See Patty Spitler's interview with Jen Weber on WISH-TV Daybreak, 9:40 a.m. Saturday, April 13.



Jen Weber doing the 2023 CF Walk virtually in Durham.

“YOLO MOJO!”

 

You could hear the sounds of this mantra all over the church basement where Jennifer Weber was celebrating her 50th birthday.

 

She wasn’t supposed to live much past 10.

 

Jen Weber has Cystic Fibrosis, a progressive, genetic disease that affects the lungs, pancreas and other organs. It can affect people of every racial and ethnic group.

 

In 2023, Jen became a member of a unique group of survivors: She is one of only 23 people who have received three double lung transplants in the United States. Yes, THREE.

 

“I was diagnosed with CF when I was around the age of 2. Today it is part of the newborn screening testing, so most are diagnosed in early infancy,” says Jen. “When I was diagnosed with CF, the average life expectancy for someone was barely 10 years old. Today, with advanced treatments, the average life expectancy is over 50 years old.”

 

In 2010, when Jen was 36, her lungs started to fail, and she underwent her first double lung transplant. In 2012, she showed signs of organ rejection and was put on a ventilator in intensive care, followed by her second lung transplant.

 

Those lungs lasted for 10 years, but by 2022 Jen was on oxygen and experiencing organ rejection once again. It was decided that she should travel to Duke University in Durham, North Carolina, to prepare for her third transplant. This was a big undertaking as she had to leave her home in Indianapolis for several months and move into a rental home near Duke, where family members took turns staying with her.

 

Out of the 23 people who have undergone three double lung transplants in the U.S. by February 2024, 13 of those were performed at Duke Health. It was a good decision, Jen says.

 

“I knew Duke was where I wanted to go because my former transplant pulmonologist from IU was there, Dr. John Reynolds. He’d

Friends lend support to Jen before her third transplant.

been with me from the start of my transplant journey, and I trusted him,” says Jen. “I knew a third transplant would be challenging: I had followed other CF patients who had third transplants, and I felt that Duke understood the complex needs we have.”


Her third transplant in January 2023 wasn’t easy for Jen.


“I ended up having almost every complication you can experience during my surgery and recovery. I was on ECMO, dialysis, had blood clots and had to go back to surgery a couple of times for my lungs. Yet I fully recovered and went home without a tracheotomy, feeding tube, or any longterm complications related to my lung surgery.”


Prior to getting listed for her third transplant, Jen had to be evaluated for a possible kidney transplant, which was approved. She also had to identify a living kidney donor, which added several months to her evaluation process. Thankfully, she found a living kidney donor – even better, it wasn’t needed. Today her kidney function is monitored by doctors. 


“While it was incredibly daunting to relocate to Durham for almost a year, the entire Duke transplant team, rehab department and lung transplant community was so helpful and resourceful to help make the transition smooth for me and my family. I can’t speak highly enough for the Duke healthcare staff or my healthcare teams in Indianapolis who coordinated my care so seamlessly.”


Duke helps Jen exercise daily!

She also came home to a new pup, a Yorkiepoo named Duke given to her by friends. “He has been very helpful in my recovery. He keeps me active especially during our walks at least three times a day,” says Jen.


In November 2023, Jen celebrated something she never expected to attain: Being a half-century old! Dozens of people gathered at Broadway United Methodist Church in Indianapolis where her friends threw her a huge celebration. The running theme throughout the event was YOLO!


“You Only Live Once is a fun motto I identified with after my first transplant,” she explains. “Experiencing such a dramatic improvement in my health, with the gift of my transplant, really helped me focus living in my joy. And, it isn’t just me I have a strong group of friends that live the YOLO motto too, and support me in my YOLO life. That isn’t to say there aren’t tough times, but especially in those difficult moments, I find YOLO opportunities that are always there!  Whatever it is, don’t put off the moments and things that matter to you  that is YOLO.”

 

Jen Weber’s challenging health issues have not stopped her from living life to the fullest. She worked as an attorney at the Indiana


Jen has played cello with the Carmel Symphony many years.

Supreme Court offices for 16 years, has been a cellist with the Carmel Symphony since 1998 and plays with other musical groups, and is an active volunteer with the local chapter of the CF Foundation. She has taken part in many fundraisers including the Transplant Games of America as a competitor and medal winner in bowling and golf. She currently is a volunteer advocate for Indiana Donor Network, promoting organ awareness.

 

She’s now preparing for the April 28 Great Strides Walk for the Cystic Fibrosis Foundation. Her team is Weber’s Walkers and – of course – you’ll find YOLO MOJO on the team shirts. The event is at Victory Field at 2 p.m., with registration at 1 p.m.

 

“This is one of the largest fundraisers for CF annually  it’s part of the national Great Strides Walk fundraisers for Cystic Fibrosis,” says Jen. “The CF Foundation is at the forefront of searching for a cure and supports several initiatives towards gene therapies, better management at complications like infections, and improved modulators so everyone with CF has improved treatments and symptom management.”

 

Jen Weber’s amazing journey is matched only by a woman whose strength, courage and determination has been an inspiration to those who have witnessed her many accomplishments despite adversity. Her friends call her Jen Warrior for a reason.

 

To join the walk or donate to the event, click here: http://fightcf.cff.org/goto/WebersWalkers


The Weber's Walkers team at the Great Strides Walk in 2022. This year it will be April 28 at Victory Field.


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