ECP Trial News

Back in July I mentioned that I had been accepted into the observational arm of a clinical trial involving Extracorporeal Photopheresis (ECP).  This is a Medicare study to show ECP works well enough that the procedure can be covered by Medicare. I was a bit disappointed that I wasn't getting the treatment, but happy to be contributing to the trial.

I am very happy to report that I was transferred to the treatment arm of the trial and finished up my third cycle of the treatment. It feels pretty awesome to be receiving a treatment that may slow my chronic rejection.

A quick recap and explanation about my rejection.  There are two kinds of lung transplant rejection, acute and chronic.  Here is a quick description of lung transplant rejection.

Acute rejection often comes on quickly, and can be usually be treated.  I had a pretty severe acute rejection about a month after my transplant. The rejection was triggered by a Coronavirus and took some pretty intensive in-hospital treatment to recover from.  I have an awesome Team, they took care of that issue, and the myriad of others that followed.

A chronic rejection may come on slower, and has far fewer treatment options. My chronic rejection was triggered by getting stomach contents in my lungs. We treated for acute rejection and performed a Nissen Fundoplication. The rejection slowed, but continued.  Once diagnosed with chronic rejection I went into the hospital for a Thymogobulin Treatment. The Thymogobulin reduced my T-Cell count from over 1600, to less than 30 cells/ul.  The Thymo did a nice job of stabilizing my rejection.

My highest post transplant spirometry included an FEV1 of over 5.8L.  FEV1 is the amount of air I can forcibly exhale in one second. My current FEV1 is around 2.0L. This puts me in Class 3 rejection.  Specifically Class 3 BOS.

From the rejection link above:

Over time, you may develop slowly worsening, chronic rejection called chronic lung allograft dysfunction (CLAD). A common form of CLAD is called bronchiolitis obliterans syndrome (BOS)...

So I'm rejecting, it's progressing (slowly), and I'm in a clinical trial of a treatment that has been shown to slow the progression of the rejection.

Extracorporeal Photopheresis is a procedure that involves removing 1.5 L of blood, separating the white blood cells from the red, treating the white blood cells with a medication then hitting them with UV light.  The whole batch is returned with a bit of saline to keep things flowing smoothly.

Here is a good explanation of the procedure and how it helps with chronic rejection.

This shows the results of an earlier trial of ECP, and why we have hope that this is going to help keep me healthy.

I've had 6 treatments in these first 3 cycles.  Only noticeable side effects are lightheadedness during the procedure, very sensitive to light after the procedure (increasing with each procedure), and tiredness for the rest of the day.

Now it's up to me to keep myself healthy during the current Cold/Flu/RSV season.

My ECP Team