It was tragic to see Maryanne and Nick. Apparently my mom was crying when she arrived and Nick (Caitlin’s dad) gave her a stern talking-to, basically saying something like, “We’re not doing this. You have one job now, and that’s to take care of Mallory. You have to be on it, and right now you’re a blubbering mess.”
When I arrived and looked at him sadly, he said (very nicely), “We’re not going to do this, I already told your mom.” He was so nice and gave me Caitlin’s old oxygen carrier that she made with her boyfriend. I think Maryanne was having a harder time by the end, and she did cry when she said goodbye to us. I didn’t know what to do, what to say, how to act. That was why I was worried about going in the first place, because they’re grieving the loss of their daughter while I represent the beginning of the journey, and what are they supposed to say? “I hope it goes better for you than it did for Caitlin”? They did basically say that. She said, “I’m so happy you’re even taller than I remember. You’re not going to have to wait like Caitlin did—she was too small to receive most donor lungs.”
I’m happy I went. Ralph and Mary invited us back again on Sunday for a pasta party, and we’re going to go. Stacy will be here then to help my mom move us into the new apartment. Today is our last day at the Fairmont so I’m going to try to muster the energy to foam roll at the gym and use the sauna, just to take advantage of it for the one last day.
2/28/17
Since I last wrote, every single day (until yesterday and today) I had a fever pattern that was the same every day. I would start shivering madly around 1:00 p.m., after Tylenol and Advil, and as the fever went up I would feel like shit—shortness of breath, tachycardia up to 140 bpm at rest, nausea, the works—and then the fever would spike up to 102 or 103, or some days even higher (one day it got to 103.7), then it would go down. When the fever would finally break, around 4:00 or 5:00 or 6:00, my appetite would come back in full force and I would eat a ton to make up for having not eaten for hours.
This pattern was unsettling. I kept thinking we should tell Larry, my transplant coordinator. The day I spiked up to 103.7 I packed my bag for the ER; it did not occur to me in my wildest dreams that they would tell me to stay home. But they did! And then a few days later—Sunday, to be specific—I just didn’t have a fever that day. I was exhausted, for sure, but no fever. It was miraculous. It might’ve been the right call not to go to the ER, but the day I called I was so anxious. I was bawling in bed and thought things were going to end in tragedy for me and for my family. I was terrified. The fevers reduce me to this scared, shriveled, sick, anxious blubberer with no sense of control over any part of my future. The fevers are the hardest thing for me right now. When the fevers are gone, life feels manageable.
I need a long-term kind of project to occupy myself with while I’m here. Maybe take up a musical instrument? Or start my book? That’s what my mom thinks I should do but not sure I’m up for that yet. I guess it can’t hurt to brainstorm.
Oh, to dream about what it could be like…it makes me wilt a bit. To think about all the girls who, in the exact same position that I’m in now, were filled with so much hope, and dreamt about all they would do post-transplant, working so hard to stay alive to get to that goal, who then didn’t make it in the end. Caitlin, I think of her so often. Her mom sent me a blog post that Caitlin wrote where so much of it hit close to home about the experience of coming to terms with being listed for transplant and coming to recognize it as a beautiful opportunity to have so much GREATER of a life than what we’ve had for years. It made me want to cry, though, because she wrote it only about a year before she died, and she had no idea how terribly it would all turn out. No one did. It wasn’t fair. And it won’t be fair if it happens to me. Transplant scares the shit out of me.
3/5/17
I never wrote about Bakery Living! It’s the apartment my mom and I live in here in Pittsburgh. It’s amazing and cozy. The lobby is like a hotel with coffee every day and bagels on the weekends. They have a gym we work out in and monthly activities that create community. Freddie and Samir are the first two people I met.
3/28/17
Had another massive bleed. I need new lungs. Apparently the amount of hemoptysis I had this time has a 50 to 85 percent mortality rate without embolization. I just keep wondering what happens if the bleeding doesn’t stop in time for them to embolize. Last night, lying in bed, I found myself replaying the scene in the ER but with an alternate ending. I pictured the bleeding going and going and not stopping until I lost consciousness and my pressures dropped and I inhaled the blood and then died. And I mainly just pictured my mom and dad crying, and it made me cry just thinking that that could have happened.
4/3/17
A girl, a CF patient, who was treated at Stanford, Monica Harding Wood, died sometime this weekend. Or at least I found out this weekend. She had been completely fine and her death came out of nowhere. She had advanced disease and was close to being listed for transplant, but she was totally stable and there was no indication that she was near the end. She went in for a port placement and G-J tube procedure and somehow died in the process, no idea how. It’s so tragic and so terrifying.
My mom went to L.A. last week to be with my grandma. She comes back today and my dad leaves tomorrow. I’ll miss him a lot. But I do think it will be good to have my mom here again because she does things for me and for the apartment that I don’t have to ask her to do. The apartment is always clean, I get three meals a day, there are always groceries, the laundry gets done frequently, etc. Pidge needs more sleep, plus he has to work for his job. He just doesn’t move as quickly as she does (no one does) so not as much gets done. But it was SO nice to have him here, to be able to spend quality time together. We watched movies, talked about books, and had a lot of good meals. I’m sad he’s leaving.
My mom is bringing our new dog tonight!! I’m hoping and choosing to believe that having Cooper here will turn things around for me emotionally at a time where I could either go back to “normal” or fall off an emotional cliff.
4/7/17
Cooper is so cute but has issues. He was a rescue and my mom learned AFTER she brought him home that he’d been returned three times. Hoping we can get him to calm down and feel safe. I already love him….
4/21/17
The day started out the way mornings have been starting out for the last few weeks: with fatigue, nausea, an attempt at breakfast, vomiting, some chills, nausea meds and fever suppression, and thoughts about a nap. But Talia was in town, and I was determined to make the day a good day.
I was doing my breathing treatments in my bedroom while she was having breakfast in the living room. My mom was out walking the dog. The phone rang with the Pittsburgh area code, 412. When we first moved to Pittsburgh in February, I would always jump at those calls, thinking they were about lungs; eventually, when time and again they were just hospital administrators confirming appointments, the home health nurse, or medication refills, I stopped getting my hopes up.
“Hello?” I said.
“Hi, Mallory, this the Cardiothoracic Transplant Program at UPMC.”
My heart started to beat faster. The Cardiothoracic Transplant Program does not usually call me.
“I’m calling because we have a potential set of lungs available for you. But I have to ask. Are you willing to consider lungs that are on EVLP?”
I immediately said yes. EVLP, which stands for ex vivo lung perfusion, is an investigational procedure/machine used to keep lungs in good shape while they’re transported from the donor to the recipient. Not everyone says yes to lungs that are on EVLP because it’s new(ish) and experimental, but for me, it was an automatic yes. On EVLP, lungs can be manipulated to better determine their quality, and keeping the lungs perfused with the machine can prevent swelling or other complications that would render them nonviable for donation.
The woman said she would call back in an hour or so with more information. As soon as I hung up with her, I dialed my mom and yelled into the phone that I got the call. “What call?” she asked. “THE CALL!!”
Talia stood by me as I started crying, feeling the implications of this moment all at once. My mom came bursting into the apartment frenzied, tears in her eyes. By 4:00 p.m., we got the go-ahead to pack up and get to the hospital. By 5:00 p.m., we were in registration, watching TV and making silly videos to pass the time until we could get into our room.
There are many points along the way after getting the call for lungs at which the surgery can be called off. We had always known that at any point from the death of the donor to the time they remove the lungs of the recipient, surgery can be called off because the lungs are not good enough.
After a short wait in registration, I was put into a room on 9D, the lung transplant floor. Two nurses collected seventeen vials of blood—blood type and screen, as well as a slew of tests to determine whether I was healthy enough to undergo surgery. One tech came to do a bedside chest X-ray, and another came for an EKG. They took vitals, my weight, a urine sample. At that point, we settled in for the long wait.
We were itching for someone to come talk to us who could give us more information about the viability of the lungs and the timing. Finally, a cardiothoracic surgical fellow, a mellow Chilean man, arrived. He told us that the “donor time” was set for 2:00 a.m. However, the donor was in a category called DCD (Donation after Cardiac Death); this means that he or she did not meet formal brain death criteria but had suffered irreversible brain injury and was near death. The family had decided to discontinue life support systems; once that happened, they would wait for the heart to stop beating. Only after cardiac arrest would organs be harvested. When the dying process takes more than about an hour, the lungs become nonviable, because as the body struggles, the lungs can become damaged. DCD lungs are often (maybe always) put on EVLP in order to improve quality and increase the chances that the lungs can be transplanted. But the likelihood of a transplant actually happening from a DCD donor is a bit lower than from a typical donor that meets criteria for brain death.
Listening to the fellow explain what would happen at 2:00 a.m. at the donor hospital—the pulling of the plug, the waiting to die, then the eventual harvesting of organs—I was struck by the two completely different experiences that were happening at the same exact time. One family undergoing heartbreak they would forever grieve. Another family celebrating the possible rebirth of a sick loved one who has suffered too long. The first person’s tragedy had the potential to become the second person’s lifesaving miracle.
My survival is dependent on the death of someone else, another human being with memories and goals and loved ones and, often, no expectation of dying. This is the twisted reality of being on the waiting list. How do we, as transplant patients, come to terms with the idea of “waiting” for someone to die, with hoping it happens quickly enough for the organs to be allocated and not wasted? I expect I will grapple with this question for years to come.
When I got summoned to the hospital by the cardiothoracic department, we called Gaby to come. She was in D.C. so it was a quick flight. Throughout that evening and overnight, Talia, Gaby, and my mom helped keep me calm when my nerves were practically bursting through the seams. I was a wreck of wired, restless energy and tempered hope. At some point, Talia and my mom left to go sleep at the apartment while Gaby got comfortable in the (terribly uncomfortable) recliner chair that so many hospitals carry for guests to sleep in. I suspected I wouldn’t sleep a wink. I was right.
For hours, Gaby and I sat there chatting, laughing, passing the time. It felt like two girls having a sleepover. It did not feel like we were in a hospital—I was not hooked up to an IV pole or a heart monitor, no nurses were coming in and out, no vitals were being taken by a nurse’s aide, and no medications or breathing treatments were given. We just waited and waited but no news.
I finally turned off the lights and rolled over to try to sleep but it wasn’t happening. I lay there, thinking, wondering what was happening at the donor hospital, what the timing would be, when they would tell us if the surgery was a go or not. I checked the clock every ten minutes until I realized that if I didn’t turn on a movie, I’d crash and burn from adrenaline by the morning. My neck and back ached, and I had rock-sized knots in my back, neck, and shoulders from the tension.
I had thought that at around 4:00 a.m. they would come in and tell me whether the lungs were looking viable. Four a.m. came and went, as did 5:00, 6:00, and 7:00. Alarms and code announcements outside the room jolted me awake any time I got close to falling asleep (the “Condition F” fire alarm seemed to last forever and was immediately followed up by a “Condition A”—cardiac arrest). The sun came up. I mixed and infused my morning IV antibiotics. I was fatigued, my optimism waning. I called for respiratory therapy to administer a breathing treatment, to help with the chest tightness and cough that had been doing its part in keeping me up.
Then, at 7:30 a.m., a man came to my room with a gurney to tell me he was taking me to the pre-op area. “Does that mean the surgery’s happening?!”
“As far as I know, it’s on,” the guy said. “But I’m not the one who would know.”
“That’s abrupt,” I said.
In the pre-op area, I finally found out some details about the timing from the anesthesiologist. The lungs, at that point, were still on EVLP and would need one to two more hours of manipulation to determine if they were viable. While we waited, he talked to us in detail about the anesthesia during the surgery, the sedation post-surgery, and a bit about the difficulty and risks of the surgery itself. He assured me that they would not bring me out from sedation after surgery until they were certain that I would not be in pain—this was very comforting to me, because the idea of being hooked to a ventilator and possibly ECMO, in pain, immobile, and unable to speak, was unfathomable.
Jack had been in Boston for the past week for a conference, so he got on a 6:00 a.m. flight to Pittsburgh to try to see me before I went into surgery. He arrived around 9:00, in time to hear some of the conversation with the anesthesiologist.
Finally, we met the man we’ve been waiting to meet ever since my first evaluation in Pittsburgh last October, Dr. D’Cunha. He is the head transplant surgeon with the most amazing reputation. Unfortunately, he came in that morning to tell us that the lungs were good but someone else was going into surgery. I’m happy for that other person, but it came as a complete shock.
What we did not know until this moment was that UPMC will sometimes call in two patients for the same set of lungs to ensure that they don’t get wasted. If they only called in one patient per set and then the lungs didn’t end up being a good fit (because of size or other reasons), it would be a tragic waste of precious organs that too many people die waiting for.
I had assumed that once I’d made it to the pre-op area, I was the only candidate for the particular set of lungs that had just been harvested. What I found out later is that the entire time, those many hours of waiting, I was actually the backup candidate, which would have been helpful to know at the beginning (for the purpose of managing expectations).
The only good thing about the experience is that we got to meet Dr. D’Cunha. The stakes had been high, emotions fraying, nerves unraveling. When he told us I wasn’t getting the lungs, it was like he stuck a needle into an overfilled balloon of anticipatory stress. I was sad that I wouldn’t be getting my rebirth that day, but also a little bit relieved that I wouldn’t have to be sawed open down the chest just yet.
When my mom asked how I was feeling about it all as we left the pre-op area, my answer was: “Definitely disappointed. But also a little relieved. Mainly starving. Can we go to Starbucks?”
Those twenty-one hours, from 1:00 p.m. Friday to 10:00 a.m. Saturday, were emotional, crazy, an
d definitely hazy. My anxiety levels have never swung so wildly, so quickly. But my crew of First Responders—my mom, Talia, and Gaby there that first day and Jack the second—eased the bumpiness of the roller-coaster ride that it was. After the hospital, we left and got Turkish food at 11:00 a.m. Warm bread and olives, soft-boiled eggs, halvah, jams, Turkish coffee, kebabs of various meats and rice, and pickled cabbage and salads, all after a day of fasting and an all-nighter, have a way of soothing the heart and providing some distance from the disappointment.
Sunday morning rolled around. Jack left. Talia and Gaby and I planned a normal day, hanging around in the morning and then going to lunch in the afternoon. At 4:00 p.m., in the car on the way home from lunch, I got another call from the Cardiothoracic Transplant Program, from the same person who had called me on Friday. There was another set of lungs for me, I was told, and this time, there were no other recipients being called. The donor was not DCD, and the surgeons were not planning on using EVLP on the lungs. This sounded super promising, and she said to get to the hospital quickly. It was more stressful this time because my mom had been sick and vomiting the entire day—probably from stress and exhaustion—but we made it to the hospital in a much shorter time frame since my bag was still packed from the previous trip two days prior. After getting to the hospital at 5:00 p.m. Sunday evening and waiting in the ER for five hours before getting registered, by 2:00 a.m. we were in pre-op, and a surgeon was coming to tell us that the lungs had been deemed nonviable in the donor surgery. After two and a half months of no calls, in one weekend I got two calls that turned out to be two dry runs.
Two dry runs in one weekend is absurdly comical for someone who’s healthy enough to wait a bit longer, like I am. But for those who are at the very end, who might not live another day or another week or another month, having more people signed up to be organ donors is the difference between life and death. My friend Caitlin fell on the wrong side of that divide, simply because she had to wait too damn long to get lungs, and by the time she did (almost three years after being listed), her body had just been through too much. My heart still breaks for her family.
Salt in My Soul Page 24