Day One at Duke

I wanted to give an update after day one at Duke. Dawn and I are staying in a local hotel that has a shuttle back and forth to the hospital complex. We had appointments all day Monday at the South clinic.

Our day started with an orientation and met several staff members. We are getting a consistent message of delaying lung transplant as long as possible. Duke wants to keep you in your natural lungs as long as possible. They have a large Center for Living that Pepsi helped establish that some refer to the torture chamber. They are part of Duke's methodology to get you as healthy as possible by exercise, rehabiliatation, and pushing your physical limits. We meet with them on Thursday.

I had some trepidation Monday as they drew 28 vials of blood. I was not sure I had that much blood! Also met with the pulminologist and lung transplant surgeon. They both thought I was in pretty good shape but urged it was important for me to be seen as they will track my progress.

After all this week tests the doctors will meet next Tuesday to decide three things: Reject me based on some physical condition, schedule me for a transplant, or have me wait. There does not seem to be anything to reject me at this point and I have a suspicion that they will say not yet.

As a result of this week tests I will be assigned a Lung Allocation Score (LAS) score. It is ranked from 1 to 100 (100 being worst) This is a system that is used to determine need. As I get updated and progress/things change they will update this score. Duke uses this score to schedule your transplant. When they determine that it is time we will have to relocate to Duke two weeks prior to the transplant and then be listed. On average they say it is 28 days from when you are listed. After the transplant we will need to be here probably 6-8 weeks.

So it looks from what we have heard it may be quite some time until a transplant takes place. Listening to the side effects and downside to transplanted lungs I am not sure that is a bad thing. Kidney issues are common, diabetes, and reflux should be expected. Life expectancy is limited to years and it is not a question of if but how long you will last. Average is 5-7 years.

It may seem to be a dismal picture but I am encouraged based on my health, support, age, and response to the medications. The doctors seem to think that it I can keep my current set of lungs for a while. It is a different perspective that I had not thought of. There are certainly people here that are in much more desperate shape. And yet I have hope that God has a plan for me to keep me healthy until it is time for a transplant.

Will update as we progress through the week.

Todd & Dawn