I sent out an email update about my road to getting onto the double lung transplant list at Stanford this morning. I will cut and paste it below so you can all follow along.
Hello Friends and Family,
I received a phone call from Stanford this morning. Yesterday, Monday, March 2, the team at Stanford decided I am a worthy candidate for their double lung transplant program and I have been accepted!
Currently my Lung Allocation Score (LAS) is 35, which is a pretty moderate score for someone sitting at home doing as well as I am. Stanford has been performing many double lung transplants since January 1, 2015, almost one per week. One gentleman who was listed on January 23, 2015 got his lungs on February 23, 2015, one month later. The general caveat is, average wait time for lungs at Stanford is 9-12 months, but without saying so, the coordinator made an impression on me that I could end up with lungs sooner than 12 months from now.
People waiting for lungs in my geographic area only include people at Stanford and the University of California at San Francisco (UCSF). On any given day there could be an average of 10-20 people in the O blood type (I am O+) waiting for lungs at these combined hospitals. The good news is, my lung cavity is of larger size than we thought, due to air trapping, giving me a bigger, what they call, barrel chest, from my sick CF lungs. This will open up offers from donors of “normal size” rather than waiting for lungs from a more petite donor because I have the room. Petite donors are more rare, but not impossible.
The next step is insurance approval which takes anywhere between 7-10 business days. After the insurance approves the surgery I will be called and we will talk a little bit about my oxygen usage, as I’m using more than she calculated, and this will boost my LAS. I will send out another email once I am officially on the list for a double lung transplant at Stanford University Hospital. Right now we are still in a holding pattern and I am not on the list.
This is great news today. Things are moving forward. I am very pleased. You heard it here first!
Think pink lungs!