UN-Tethered

CIMG2308When the doorbell rang, I was as giddy as a little kid. It was a gorgeous afternoon, just perfect for taking back one more piece of my independence.  At the door was TJ, my awesome oxygen dude and a twice weekly visitor for most of the past year. But TJ wasn’t dropping off this day, he was picking up!

I’d been staring at empty liquid oxygen (LOX) reservoirs and silent O2 concentrators (two of each) for nearly two months, and it was seriously bumming me out. While not

TJ wheels one of my liquid O2 reservoirs!

TJ wheels one of my liquid O2 reservoirs!

long ago all that equipment kept me alive, it quickly become an unwelcome reminder of the struggle that nearly ended me. Since I’m not a dwell-on-the-past kinda person (at least not anymore), I couldn’t wait to get rid of all those tanks and machines so I could fully focus on what’s ahead: rehabbing my lungs and body, eating right, staying active and living the kind of life that will make my donor and his family happy they made the decision they did.

It took me a little longer than most to get rid of the actual equipment. Barnes Jewish, my transplant center, requires patients to keep their home oxygen equipment until after their one-month bronchoscopy. But I had to hang onto my relics until my team could schedule an overnight pulse oximetry test. It’s a simple test — my oxygen company dropped off a special pulse oximeter that recorded my sats while I slept. I don’t know the actual results yet, but I do know that my sats still drop at night, so the nocturnal Os continue (for now).  I did, however, convince my team that a home system designed to deliver up to 35 LPM was kinda overkill (not to mention expensive!)photo 1(1)

So when TJ wheeled the last concentrator out the door, I couldn’t help but shout So long huffers! He left a smaller, quieter 5-liter concentrator to supply the 2 LPM I still use at night —  my “sculpted lungs” have a little extra healing to do. But 2 liters is a whisper after the 15-30 liters I had blasting in my nose before.

Every day I see improvement.  Every morning that I wake up and take a deep breath is another miracle. And every day I give thanks for the many people who have worked so hard to keep me going: the folks at Lincare, who created an O2 system that could feed my need; my pulmonologist, Dr. Dan Potts (and Linda), who recognized my IPF immediately; everyone at St. Luke’s Respiratory Therapy and Pulmonary Rehab, who problem-solved with me and accommodated me in every way; the incredible team at Barnes-Jewish Lung Transplant Center, whose expertise and compassion are beyond compare; and my supporters, who have showered me with prayer, good humor and lots of encouragement. This little victory belongs to all of us!