We arrived in Sedona a day late. On Tuesday, my dad and I picked up a rental car and headed south to Phoenix, in direct opposition of our planned itinerary. Stanford’s Lung Transplant Team wants me to report any abnormal symptoms without making my own judgments—a fact my mom reminded me of when I tried to blame a hypoallergenic dog for my itchy eyes, stuffy nose and raspy voice. So I called them, and they advised that I go to an ER at a facility that does lots of lung transplants. Driving 50 minutes out of the way to spend six hours in a hospital gown was not what I pictured for this family vacation, but I could hardly complain, especially when all the tests came back clear.
Every day I think about my donor. I fought back tears as I dressed for our Christmas Day hike. The intensity of my joy to be alive to spend this holiday with my family is probably a good indication of how intense his or her family’s grief is right now. For me, this trip is about honoring the gift I was given. I want to use my second shot at life to do activities and see beauty I wasn’t able to before. But honoring the gift means protecting it, so before I could take my new heart and lungs to Sedona, I had to make sure I hadn’t picked up a nasty virus that might attack them.
The first question I was asked was whether I was carrying any weapons. I knew right away that this would be an interesting experience. If you have spent any time in an ER, you have probably overheard some quality conversations. My favorite, relayed by my dad, went as follows:
Nurse: How much have you had to drink?
Nurse: How much is plenty?
Patient: Beer and vodka.
Nurse: How much beer and vodka?
Patient: Not enough.
I was happy to be a drama-free patient for once. My dad was scolded for silencing an alarm on my monitor, but our stay was otherwise uneventful.
The familiar feeling of guilt surfaced when we checked into our charming motel a day late and selected two Sedona hikes instead of three. My family constantly makes sacrifices for my health and this trip is no different. My compromised immune system dictates which restaurants we eat at—my mom checks local health department ratings and I scout out what I’ve dubbed “loner tables,” where I can remove my mask without fear of being coughed or sneezed on by other diners.
The inconvenience of an ER visit and a few necessary precautions melted away when I was able to complete a 7-mile hike with my family—at elevation, no less. The four of us are acutely aware that our vacation was made possible by the generosity of others—friends who eased the financial burden of my transplant and my donor whose heart and lungs helped me do the longest hike of my life to date and have the energy to stay up late typing this.
I believe my family’s accustomed proximity to death makes us especially empathetic to my donor family’s grief. In the past few years we have lost a bewildering number of friends—to chronic illness, accidents, suicide, cancer, and so on. My sister and I have been greatly influenced by our dad’s work as a nurse and clinical manager for Hospice and our mom’s loss of both her parents when she was younger than I am.
Just before my dad started plugging my blog to a friendly group of hikers we met at the end of the trail, my mom tearfully explained to them the magnitude of my accomplishment and the paradox of the tragedy that made it possible. I began stress-eating crackers and tuna from embarrassment. Even though it mostly goes unspoken, my family’s most joyful moments are accompanied by a sense of sadness knowing every day I spend with my new heart and lungs is another day my donor family spends without their loved one. We welcome the reminder to honor the gifts we have been given—not just my gifted organs and new abilities, but also the gifts of togetherness, natural splendor, time off work and school, safety, friendship, love, rainbows, unicorns, and so on.
Since my last post I have stopped taking a medication that was intended to counteract steroid psychosis. I was scared to go off it. I often make jokes about the studies linking the steroid I take with homicide so my roommate was scared too. I survived the titration, with only a couple nights of insomnia, and now I feel much more energetic and clear-headed. My roommate survived as well. This medication change seems to have stabilized my mood swings, making me more confident in my ability to make plans and have coherent conversations. Having fewer chemicals in my body has restored some of my trust in my own emotions. I am ecstatic to simultaneously ring in the New Year and six months with new organs. That might have something to due with the fact that I can take fewer steroids after the six-month mark, which happens to be January 1st. 2016 has been one hell of a ride, but I wouldn’t trade it for anything. Now I’m off to the Grand Canyon to close it out!