New Year's Thoughts

December 21 marked Sunreturn, the winter solstice. This is the day we cherish for indicating, in all its brevity, a reversal of course. Now, undergirding colder and still colder days crowned with mounds of unmelted snow, is the slumbering promise of spring. Scarce hours of winter sunlight creep forward as the planet spins round the Sun, propelled toward warmth and light and verdancy. We wait in hope for crocuses and groundhogs and jacket weather.

One year, seven months, have passed since I was first listed for transplant at Cleveland Clinic. The waiting wears on me more now than it did at the beginning. Initially, I could mostly forget the reason I’d transformed my occupation from nurse-midwife to lady-who-lunches. My faithful friends made the wait seem self-imposed, a sabbatical staycation of sorts. In a new city with fewer lunching companions, my major weekly activities focus on caring for my health: doctor’s appointments, pulmonary rehab sessions, nurse coordinator check-in’s. There are fewer distractions from the reasons I’ve interrupted my life in Boston to move to Pittsburgh.

It’s been a hard year, one of repeated accommodation and mental readjustment down the continuum of my changing physical abilities. It’s uncomfortable to acknowledge the steady progression of new “normals,” each slightly less robust than the old. I often feel stuck, suspended between a past and a future when my body obeys my mind, to live in a present when the response is intermittent. This sense of liminality also applies when I attempt to plan for the future. It’s much easier to fill the day with tasks to pass the time than to prepare a timeline with a fixed endpoint.

And yet each new normal is just that. Some days, I'm walking out the front door before I remember that the fifty foot length of tubing attached to my stationary oxygen tanks is poorly adapted to riding the elevator. I can almost forget my fifth limb. Likewise, my weekly routine of pulmonary rehab and mentoring feels like my “job” for now, as distant as it may seem from twelve-hour labor shifts and prenatal visits.

Still, I glean moments of transcendence wherever I may find them: in morning meditation, in the four part harmony of Sunday morning hymns, in words of love from true blue friends. In comparison with those of the planet, my troubles are small, and I know that my blessings are many. I am fed, clothed, and sheltered. I am loved by my husband, my family, my friends. I live in peace and security, safeguarded by a building with a doorman and excellent health insurance.

This seemingly ceaseless wait will end soon. One day I’ll write to you of dancing with Peter, running along the Allegheny or the Charles, sitting through a movie marathon, all with no regard for oxygen tanks or shrinking energy stores. What are you allowed to ask for when you pray for a transplant, knowing that more life for you inevitably means another life’s termination? I ask for peace, and patience, and perseverance, and for the richest, fullest life imaginable for my donor before his or her lungs become mine. While I wait, I receive the love that each of you sends: kind words, positive intentions, lovingkindness meditations, intercessory prayers, love vibes. I send it back with gratitude for your compassion and empathy.

Thank you for waiting with me. Spring is coming. 

Happy New Year!

Phipps Conservatory Botanical Gardens

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.

Oxygen for Cleveland: squeezing R2D2 in X-wing fashion

Pittsburgh Symphony Association "Flaunting the Flutes" fundraiser