Keeping on Keeping on - A New Treatment is in My Future

It's coming on a month and a half (40 days) since I was discharged from the hospital after completing my Thymoglobulin treatment.  I feel great, and was looking forward to today's visit with the Team.  I expected to have confirmation that my lungs were stable and then talk about some kidney function issues that the medications have brought up.  Well... turns out that even though my daily spirometry at home is basically, in my optimistic interpretation of the results, stable, I am still experiencing a slow decline in lung function.  My in-clinic FEV1 (basically the amount of air I can forcibly exhale in 1 second) has dropped from 2.03 to 1.83 liters.  Heavy sigh.

Next on the agenda is Extracorporeal Photopheresis (ECP). ECP utilizes a machine to remove blood, isolate the white blood cells, then medicate and UV irradiate those cells.  The blood and altered cells are then returned.  Here is the Medscape explanation of ECP.  On a very positive note, all of the treatments are out patient.  That's important and makes things much easier on us. The outlook following this treatment is also positive.  Here is a report from a retrospective study performed at a transplant center in Germany that I found pretty interesting.

I couldn't find any cool Photopheresis images to share, and I know everybody likes images so here is one from the UT Southwestern ECP page.

My kidneys have been having a very hard time with the meds of late.  I started really pushing water intake after my last clinic visit and it has helped.  My Creatinine level has dropped to 1.4 mg/dl from a high of 1.75.  Creatinine levels for normal kidney function are 0.67 to 1.17 mg/dl, so I do still have a ways to go. It is great news that I am trending in the right direction.  Healthy kidneys are an important factor in keeping the potential of a second lung transplant a viable future option.