Entry 1

Jeffrey and me

On Feb. 2, I awoke two minutes before the alarm went off. I have cystic fibrosis, and in those days, most mornings were characterized by some respiratory distress until I got in a few good coughs, cleared a bit of mucus to make way for air, and adjusted my supplemental oxygen. But for some reason, that morning I didn’t have any panicked breathing and could take a moment to watch the light coming up and my fiance Jeffrey resting beside me. When the alarm sounded at 5:30, Jeffrey and I sat momentarily in each other’s company. Then came the call. “Miss Quigley? Good morning. We have a new set of lungs for you this morning. We would like to start the process.” “Excuse me?” was all I could say in reply.

I feel almost contrite admitting it, but I had been listed for a double-lung transplant for only two weeks. If you know anything about the plight of patients waiting for organs in America, you’ll know that my experience is an aberration. Most transplant recipients wait months, years. I was given a projected wait of at least six months. I always knew I would need a transplant someday, but at that point I had undergone the evaluation as more of a precaution, in case my recent, critically declining health didn’t make its characteristic upward swing. I wouldn’t admit to being an “end-stage” cystic fibrosis patient, and I certainly never thought I would have a transplant so quickly.

Shocked, I looked to Jeffrey, who was only barely comprehending the content of the call. I asked if anyone had ever turned down an organ. She, the voice, a transplant coordinator, was taken aback by my inquiry but said it had happened once in her three years of experience and that case was complicated by the donor having hepatitis C. I didn’t know what to do. “How much time do I have to decide?” I asked. The lungs were at the hospital across the street from where I would have my surgery, in the huge Texas Medical Center. I live 15 minutes from the Medical Center. It was all a little too convenient, really. Or perfect, maybe. Or fated, perhaps.

I talked with Jeffrey, then called my sister, my parents, and my cystic fibrosis physician, in that order. Through those conversations, I came to see the transplant as a matter of opportunity. I felt this might not be my only chance, but certainly it might be my best: My CF physician told me she had spoken with someone who had seen the lungs, and they were in perfect condition. My mom invoked my family’s beloved Patriots, who had just won the Super Bowl here in Houston the previous night—a good omen? Hanging up the phone and sitting quietly, it felt like there was no decision to be made. I turned and said, “We’re going to the hospital.”

Jeffrey packed for me, pulling together some clothes and medications, under my somewhat aimless direction. I asked him to bring a couple of books in case we had time to pass: T.S. Eliot’s Four Quartets and a portable James Joyce, from which I really only wanted to read the closing passage from The Dead, about “snow falling faintly through the universe and faintly falling.” I also requested a small photo album of Jeffrey’s and my courtship, mostly of places we’d traveled before we were engaged last year. Oh, and I brought a small, mousy stuffed animal, a good luck charm my Mom had given me when I competed in the 1986 Massachusetts state swimming championships. Finally, I put on a necklace, a cross from my first communion, which I knew I would only be allowed to keep for about an hour.

I remember only snatches from the time at the hospital. I know I stared at CNN in a waiting room. And then there was the parade of physicians, residents, and nurses wanting to shake my hand and get my signature, or “consent.” I was introduced to a couple of other lung transplant recipients who happened to be on the floor and were doing well, but I couldn’t help but wonder, where are those who didn’t do well? I received the sacrament of the sick, aka last rites. And then, abruptly, they arrived to take me to the surgical holding area. I held them up in the doorway and asked if I could use my cell phone one last time and said, plaintively, as I dialed: “All I want to do is call home. It won’t take a minute.” My family passed the phone around back in Massachusetts as I told them I loved them.

Here I am post-transplant

I was in the pre-op holding area for some time, staring at other prepped patients, as the on-site transplant coordinator kept checking on whether the surgical team had “visualized” the lungs; this is the evaluation critical to clearing the healthy donor organ and taking a patient into surgery. Ultimately, when they whisked me into the room, it was just as I imagined. They pushed me through swinging doors to the left, while Jeffrey, who was at my side, was jettisoned to the right after sharing simple words and a deep lock of eyes. I was under within moments.

Sometime during the next seven hours, while my parents boarded a plane from Boston to Houston, the surgeons sliced my chest open, horizontally, and lifted up my ribcage. They also biopsied some lymph nodes, which had looked suspicious on an earlier CT scan. Had they come back lymphoma-positive, I would have been sewn back up without transplanting. Thankfully, pathology came back clear, and they could proceed. And of course, they put me on machines that moved and oxygenated my blood while they scraped my old lungs out of their cavity and lay a new set in.

During my years of decline with CF, I suffered profound fear of a transplant because I didn’t want to die in surgery or in severe complications immediately thereafter. I also thought I would be overwhelmed by the necessary circumstance of receiving lungs—that someone else must die. But I always knew I would do the surgery when it came time. My childhood physician admonished me, most of all, to list myself for transplant “in time.” I didn’t know when that time would be, but that time was now.