Jen desperately needs your help!!
At age 13, I underwent my first double-lung transplant due to a lifelong battle with Cystic Fibrosis (CF). Now, at 22, I’ve been living with chronic lung rejection while waiting for my second double lung transplant.
I was diagnosed 20 years ago with CF, a genetic disease affecting the lungs and digestive system. The disease causes abnormally thick mucus in the lungs, which results in frequent, life-threatening respiratory infections and continued hospitalizations.
There is no reversal of the effects or a cure. The only life-saving option is a double-lung transplant.
I am originally from California, and in 2013, a double-lung transplant was my only option to live. My family and I moved to the Philadelphia area and underwent my first double-lung transplant at the Children’s Hospital of Philadelphia (CHOP).
I had five great years with my new lungs and have been living with chronic rejection for the last three years. My chronic lung rejection started at the same time as the COVID-19 pandemic. Since January 2020, I’ve been on oxygen 24 hours a day, my lung function has declined to 20%, I have only left home for my doctor’s appointments, and have been living in constant fear and pain.
Due to surgical complications and my history of CF lung infections, transplant-related diabetes, cancer, and GI problems, I have been accepted by only one transplant center in the country because I have such a high-risk case.
I’ve been waiting on the list in the Philadelphia area for two years now, and the longer I wait for my new lungs, the harder it’ll be for me to make it through such a high-risk double-lung transplant surgery.
Thankfully, NYU Langone Health in NYC has just listed me, and I have renewed hope! But, my mom and I must move to NYC ASAP for at least a year since this center has significantly shorter wait times and excellent outcomes.
My second life-saving transplant is a significant undertaking, both medically and financially. An operation of this magnitude, including pre-and post-transplant expenses, can range up to over one million dollars, even with the help of medical insurance.
We are anticipating an out-of-pocket cost to be around $250,000.00!
Despite these challenges, I have kept a positive attitude and look forward to returning to my life. I have been a fighter my entire life, and I need your help to overcome this huge challenge!
Please share this link with all your friends, family, and colleagues and follow me through my second transplant journey. Every dollar raised for COTA for Jens Lungs counts and gets us closer to our goal.
With heartfelt thanks,
Jen
You can follow Jen’s journey online on Instagram, Facebook and TikTok.
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.