Jen Weber, an attorney and musician in Indianapolis, IN, was diagnosed with Cystic Fibrosis at the age of 2. Cystic Fibrosis damages many organs of the body, primarily the lungs. After 7 years on oxygen, Jen received her first double lung transplant on January 10, 2010 at Indiana University/Methodist Hospital at the age of 37. After years of not being able to breath well and pulling around a heavy green oxygen canister, Jen became a runner, training and running in the Indianapolis Mini Marathon and the Indy Women’s Half Marathan. Unfortunately, only 2 years later, she experienced a sudden and swift rejection episode. Jen spent 8 months in the ICU at Methodist Hospital with a tracheotomy and on the ventilator, pushing herself to keep in shape for her next double lung transplant which came on October 24, 2012 also at IU/Methodist.
Jen is now facing her most daunting challenge and after years of “giving back”, she needs some assistance. Jen has been unable to work for the last couple of years due to increased oxygen demand secondary to chronic rejection of her second pair of lungs. She currently is in need of her 3rd double lung transplant, and most likely a live-donor kidney transplant as well. In order to receive a rare 3rd transplant, she has temporarily relocated to Durham, NC, the home of Duke Medical Center. It’s unclear at this time how long Jen will be in Durham, but we are hoping she will be back in early 2023 with a new pair of lungs (and a kidney if necessary).
Although Jen wants people to know she has decent health insurance and has managed her money well, there will be unexpected expenses, not to mention the relocation expense itself. For this reason, she has partnered with COTA, a 501(c)(3) organization. We are hoping to raise $65,000 for COTA to help with any transplant-related expenses. Jen picked the amount $65,000 because of the significance of that number in the CF community (see the “65 Roses Story” at https://www.cff.org/about-us/65-roses-story). COTA stands ready to assist Jen for her lifetime. COTA allocates funds to the COTA for Jen Warrior campaign, which will make an impact not only for her transplant-related expenses, but for other transplant patients in the event campaign funds exceed what she needs during her lifetime (which will hopefully be a very long time from now).
Jen’s friends and family have been a tremendous support throughout her life as she has battled the many physical challenges of living with Cystic Fibrosis and being a transplant recipient. Her life motto is YOLO…you only life once. Jen is living her life to the fullest and we all want to help ease some of her potential financial burdens as she faces this next challenge in life.
Jen intends to update this site periodically to chronicle this next exciting adventure and is grateful to everyone for their love, prayers, good thoughts, positive vibes, and all good energies sent her way.
The Children’s Organ Transplant Association (COTA) helps children who need a life-saving transplant by providing fundraising assistance and family support. COTA also works with individuals of any age with a single-gene disorder such as Polycystic Kidney Disease, Cystic Fibrosis, or Sickle Cell Disease. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy families. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free of charge and gifts to COTA are tax deductible to the fullest extent of the law.