Getting all geared up

   Sunday marks a big day for us. It's the beginning of our transplant journey. Since this is our first post on this blog I will give you some background.....

    My husband William has Cystic Fibrosis. Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

   William is 33 years old and his health has declined enough in the past few years that we are now trying to get him on the transplant list to receive a life saving Lung AND Liver transplant. I say AND because the liver aspect of the disease is more rare and because of that only a handful of hospitals in the US do the combined surgery.  We moved to Memphis from Kansas City in May of 2010 to pursue a lung transplant only to be told his liver was too far gone and would need to be transplanted as well. This was a very heart breaking set back for us, as we had put all our efforts and finances into moving to Tennessee.  Unfortunately Tennessee is not one of the locations that do the combined Liver/Lung surgery.  Pittsburgh, Duke and Barnes (STL) are the only ones we know about that do.  We have been accepted at Barnes-Jewish Hospital in St Louis to be evaluated for transplant.  This evaluation begins Monday at 7:30am. Very exciting and very scary too. During this evaluation they will assess William's overall health and readiness for transplant, and also that he will be able to survive the surgery and that he has the support to get through this journey.  We are hoping for good news and will definitely keep you posted.
   
   Now for a little more info about us....William and I married in 2006 and we have a beautiful 5 year old daughter, Jordyn.  She keeps us very busy and is the light of our lives.  My name is Kelly(for those that don't know us personally) and I am a Respiratory Therapist which has been very beneficial in dealing with CF and all that it can throw at you.  I am an avid runner and I love to eat. William is a very caring and loving stay at home dad. He loves football and all sports.  He loves cars and his family.  We are kind of home bodies right now but post transplant we will be set out to conquer and see the world.  When William's health was better he loved playing sports as well as watching them, and I LOVE to travel.  I hope to be able to take William camping someday, its one of my favorite past times. 

    We have and will continue to go through whatever life has to throw at us with open-minds and hearts and we fully believe that on this journey we will learn all the amazing things that life has to offer.  We are learning life's lessons together. Please join us.