the adventures of e and p: Where are you on "The List"?

Hello, dear ones!

Last week marked two milestones for me. First, seven years of marriage with my wonderful husband, Peter, have been such a gift. In the Canticles, Solomon extols the virtues of love. "Many waters cannot quench love, neither can floods drown it." (SoS 8:7) Peter and I have faced many floods together in the past two years, both related to my declining health and the ordinary struggles of daily life. But doing the work of loving another imperfect person as well as I endeavor to love myself is a source of renewed joy and gratitude as we walk through life as partners.

Second, I came through my first set of major pulmonary testing since our move to Pittsburgh, scoring with respectable, if not flying, colors. Since our return from Cleveland Clinic, lots of you have kindly inquired about my status and wondered about my placement on "The List". For solid organ transplant candidates, "The List" both is and is not a document ranking patients with end-stage organ failure. The transplant waiting list is actually a pool of eligible recipients, all deemed sufficiently ill to require a replacement organ, but sufficiently healthy to rebound from the stresses of surgery with renewed vigor. Lung transplant candidates are assigned a Lung Allocation Score (LAS) based on multiple factors including age, blood and antibody type, disease diagnosis, relative lung function (disease severity), BMI, distance walked in six minutes, and minimum oxygen dosage at rest. The LAS attempts to balance the likelihood that a person will survive another year without a transplant with the likelihood that the person will thrive post-transplant. Scores range from zero to one hundred, with an LAS in the mid-thirties as the minimum for transplant listing. While sicker patients have higher scores, this alone is insufficient for a match. When an organ becomes available, an algorithm eliminates obvious incompatibility: candidates with the wrong blood or antibody type, height, and other medical factors. Remaining candidates are ranked based on still more factors, acuity and possibly proximity to the transplant center among them. For lung transplants, time on the waiting list rarely affects candidate selection; it's considered only as a tie breaker for two patients in the same geographic zone with identical scores.

While people often imagine jets zipping across the country, carrying organs in coolers to and fro, eighty percent of donor organs are transplanted to local recipients. The US comprises eleven geographic regions. Generally, donor organs are first offered within their own region, then to adjacent regions, and finally to more distant regions, in hopes of rapid transplantation and minimized complication. Removed from an active circulatory system, an organ's limited shelf life requires prompt transfer to another living host. While timing varies, lungs need to find a new home in approximately six hours, not enough time for zipping from Seattle to Orlando with an organ still intact.

When I saw my pulmonologist in Cleveland last Thursday, she mentioned that she'd recently had a near match for me, an almost good enough set of lungs. She received an offer for the lungs of a six year old that were a suitable size, except that the trachea was too small an airway for an adult. Pediatric candidates receive priority for pediatric organs, but adults can receive these organs if they match donor criteria. While I felt encouraged that my transplant is truly possible, I wasn't sure how to feel about the potential donor. It's disheartening to think that a six year old's lungs are adequate to meet my body's oxygenation needs, and also to consider that a family had to contemplate donating the organs of their six year old child. So far I've been listed at Cleveland Clinic for one year and five months, and at UPMC for six months. Some days, it's disheartening to consider how long I've waited and how much longer the wait could be, but this is the only legal organ transplantation system we have. And yet I see the blessings of my life very clearly. According to the Organ Procurement and Transplantation Network (HHS), an average of twenty-one people in the United States dies each day while awaiting transplant. In the last two weeks, two of my pulmonary rehab cohorts have been taken to the ED during our sessions due to acute respiratory illness. For all my struggles, I enjoy my life in relative health. Though the journey is long, I'm still satisfied to be me.