Kenny is 26 and was diagnosed with Cystic Fibrosis (CF) when he was 14 months old.  The physician that diagnosed him told us he would never see the first grade.  Cystic Fibrosis is a genetic, terminal disease with no cure and few options for treatments.  CF primarily affects the lungs and digestive tract.  Patients are frequently hospitalized for severe lung infections and like Kenny, many have CF Related Diabetes (CFRD).  Because of the thick, sticky mucus in his lungs, Kenny has pseudomonas and MRSA, causing him to be admitted to the hospital for two-week “tune-ups” where heavy doses of antibiotics are delivered through a central line.  During the last year, he was admitted almost every month.

 

Kenny’s lungs took a steep decline in the last year and as of last week he only had 19% lung function.  He has been working really hard with our amazing Transplant Team at the Nazid Zuhdi Transplant Institute to be listed for a double lung transplant and was officially listed Friday, April 24th.  Five days later, he got the call for an offer of lungs.  It was so fast!!!  We rushed to the hospital that afternoon knowing that this could be a “dry run” and we could possibly end up going home.  But the donor’s lungs were a perfect match.  The donor’s family not only saved Kenny’s life that night, but someone else received a heart.  I can’t even begin to describe the gratefulness we feel towards an unknown family that made a difficult decision that day.   

 

Kenny has made amazing progress due to his strength and courage, and also due to the amount of love, support, positive thoughts, and prayers that have been sent his way!!  We are so blessed with our wonderful group of family and friends!  We have been overwhelmed with the love and support that we have received.

 

Kenny went into surgery a little after midnight Thursday morning and was in ICU around 9:00 a.m.  He was incubated with a vent tube, but because he was doing so well, that came out before noon!  He was on only 2 liters of oxygen which, compared to the 4-6 liters he needed 24/7, was incredible.  Later that evening, he was off the oxygen and breathing room air for the first time in years!!  He also slept that night for the first time in a decade without the aid of a bi-pap machine.  The next morning, he was sitting up in a chair and then walked laps around the ICU with NO O2!  He moved out of ICU that afternoon and is now settled into an in-patient room.  We’ve had a few issues with blood sugar levels, and pain, but he is doing great!  Our family is so excited about this next chapter of his life.  He is such a fighter and we are determined not to be defined by Cystic Fibrosis.

 

Now that we are post-transplant, we need to begin fundraising to help with the costs of the surgery co-pays, medications, additional procedures, aftercare, travel, etc.   Any assistance is much appreciated!  We will have T-shirts available soon and are planning some other fundraisers.  Receiving the gift of new lungs five days after being listed caught us off guard.  We had hoped to have fundraising in place well before transplant.  As the saying goes – everything happens for a reason!

 

Thank you everyone for your love and support and know that it is returned.  We just can’t express enough how much we appreciate everyone’s thoughts and prayers!