Joe needs lungs…   Again. Joe Has New Lungs — Again! Check out the blogs for the latest on his journey. 

Joe was born 42 years ago with Cystic Fibrosis.  This disease not only caused him to need his first bilateral lung transplant four years ago; it also took his sister 26 years ago.  Joe lives his life knowing that the next hurdle could be the last, luckily Joe is great at jumping hurdles. 

Joe’s transplant brought a new lease on life that seemed like a dream.  Normal life had resumed.  Lunch breaks were replaced with 20 mile bike rides.  He played on a recreational league volleyball team.  He got to go to Raven’s (his step-daughter) high school graduation and helped her move to Boston for the summer.  Joe and his wife Jennifer took a couple great vacations and weekends were for adventures.

A little less than two years after his transplant, Joe went into acute rejection.  This was a tipping point that changed everything.  25 mile bike rides several times a week were replaced with only the daily dog walks.  Life got harder for Joe.  He was down, but not out.  Joe and Jennifer made the best of their life together and enjoyed each other’s company in the ways that they could. Adventures would have to wait.  They waited, and waited, and waited.  Weekends were now for relaxing.

Fast forward to October of 2021.  A bronchoscopy stirred up an infection and that infection caused a downward spiral that there was no coming back from.  Oxygen tanks were delivered.   Neighbors pitched in to help walk the dogs.  Anything requiring walking more than a couple hundred feet became impossible.  Weekends were now for sleeping.

In December Joe and Jenn traveled to Durham to begin the process to see if Duke University Hospital would undertake the unique challenge of performing a second bilateral lung transplant.  That didn’t go as planned as his body didn’t allow him to complete the week of testing and instead, he spent a couple of days getting to know their inpatient care team (and eat their dreadful hospital food).  When they went back the second week of January to continue the evaluation, they were surprised to hear that Joe is in his “transplant window” and they should move to Durham ASAP.  They knew things were bad, but they didn’t realize that they were that bad.  On February 2^nd, Joe and Jenn are packing up and heading to Durham leaving their home, friends, and family to rent a furnished apartment 3 hours away.  They were told to plan on being there for six months.  Weekends are now for preparing – physically and mentally.

Jennifer will have to take an unpaid leave of absence from her job caring for others as a front-line health care worker in order to care for her number one patient while he gets ready for and heals from the most physically painful and mentally challenging thing he has ever experienced- for a second time.  While they are out of work, the mortgage, car payment, insurance and all the other bills of life still need to be paid, along with the rent, groceries, etc.  Jennifer and Joe have partnered with COTA for assistance with transplant-related expenses to help relieve that financial burden.  Please consider donating to COTA for Joe’s Quest.

Why COTA? 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.