“Forget you’re on the transplant list and live your life as best as you are able,” Dr. Hays reminded me at my recent UC San Francisco Lung Center quarterly appointment.
I had just revealed the difficulty I was experiencing emotionally after 13 months of waiting for a lifesaving transplant of two new lungs. Mine are failing, and I was questioning how much breath was left in them after six months of repeated bacterial infections.
Yet, he was spot on. If I kept waiting in my current state of mind, anticipating “The Call,” I’d keep missing out on the precious present moments of life.
I had been living in a self-imposed cocoon, hidden away in our log cabin on the mountain. Leaving home was such a huge effort that the primary outings to church, doctors’ appointments, and pulmonary rehab were well planned in advance (the one exception was the Dodgers
playoffs and World Series, of course, though I was hospitalized shortly thereafter!).
Embracing Dr. Hays’s wise insight, Steven and I began making plans. On New Year’s Eve day, we had a delightful lunch after church with dear friends at the River View.
That evening, we broke our stay-at-home tradition, which includes the exciting Dick Clark special on television, watching the ball drop at midnight (9 p.m. PST) on Times Square, then collapsing into bed from this raucous celebration. Instead, we ventured out to the Three Rivers Brewing Co. where our daughter, Meaghan was fire spinning.
Joined by Sierra, Jean Paul, nephew Evan, and friend and neighbor Jana, we celebrated 2018, full of hope and love that no matter what may come this year, we had an amazing team.
During January, Steven and I dined out in Three Rivers four times (three times more than we usually do), celebrating birthdays and family visits; have been to the cinema three times; attended church and Sunday School (which begins at 9:30 a.m. and for those of you who know me, this is early!); have gone out for Reimer’s famous wild blackberry ice cream twice; and discovered the Jerky This! stand (which has been here for 15 years?!).
Oh, and yes, I was also hospitalized for 10 days after two memorable rides in the ambulance. However, even a visit to Kaweah Delta provides an opportunity to visit friends I’ve met while in the hospital, from my favorite ER nurse, Ryan, many nurse angels who I now visit on Facebook,
and my Three Rivers coffee angels, Karen, Emily, Alex and Tammy.
The culmination of making plans for the future? Steven and I have tickets to see the Broadway musical “The Book of Mormon” in San Francisco next month after a visit with UCSF. This is huge!
Our family is all about Broadway, theatre, and symphony, of which I haven’t been to in several years. Needless to say, I’m so excited and my theatre outfit is already packed!
How can a phrase so simple — “Forget you’re on the transplant list and live your life as best as you are able” — change my way of being so dramatically? Yes, I still need a double lung transplant; I’m trailing a 50-foot hose around the house attached to an oxygen concentrator 24/7; and I still wind up in the hospital after a vigorous bout with an infection.
I have days where I’m unable to leave my bed or dress myself. And I know these days are going to happen; such is the nature of my disease.
But my mind has shifted. I’m no longer living in fear of getting sicker. I have today… and maybe only today. I don’t know for sure.
I do know, however, life is not going to pass this Warrior by. I will keep on fighting, living, loving, enjoying. The alternative doesn’t look so appealing.
Watch out… I have stuff to do!
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Rachelle and her husband, Steven Swinney, have lived in Three Rivers for 31 years. Rachelle has allergic bronchopulmonary aspergillosis (ABPA) and bronchiectasis. She is dependent on supplementary oxygen 24 hours a day while awaiting a double lung transplant.