ECP Trial Update

Yesterday I mentioned that my Team had requested that I be evaluated for participation in a clinical trial using Extracorporeal Photopheresis to help slow the progression of chronic rejection.  A lot has happened since then.

I received a call from the ECP team at UTSW early this morning and was sitting in an exam room by 10:00.  There was a physical exam checking vitals and to see if I had good veins (I do), then I met with the team and we went over the trial. We talked about the goals of the trial, how photopheresis worked, and the potential negative effects of the procedure. I filled out a quality of life survey (these have really improved over the past few years and applied to participate in the trial.  There are two arms to the part of the trial I qualified for. One arm receives the treatment, and the other is the observational arm.

 I got a call this afternoon and... I've been accepted into the trial as part of the observation arm. Not quite what I was hoping for, but I am still a part of this important trial. Also, if my rate of decline increases I could be transitioned to the Treatment Arm. So treatment is still a possibility for me.