Salt in My Soul

by Mallory Smith

  Some might think it was irresponsible to take an IV holiday so soon after the doctors said I couldn’t survive off IVs. But life is a balancing act—as patients, we have to keep our bodies healthy, yes, but also our minds. We have to know that there’s life out there to be lived, however sick we get. Whatever it takes to remind us of that is worth it, in my eyes. Calculated risk-taking is the name of the game for me now, rather than cautious sheltering.

  I do know now with 100 percent certainty that I made the right choice to go. And the right choice to come back, as it’s pointless to stick to a vacation plan if you’re so sick that being away from your doctor is terrifying. Both were such huge decisions, it was hard to know what to do. Going was enormous, canceling our last few days in Hawaii was enormous, deciding to land and head straight to the ER without unpacking or getting resettled was enormous, but my gut was telling me that I needed to be back in my second home. I needed to be evaluated.

  9/1/16

  Two big developments with Jack!

  First, his dad wants to meet me!!! Jack sent this text: “My dad wants to meet you. That’s super rare. He even choked up on the phone when he told me how proud he was that I have been able to find a way to support you even though you’ve been going through so much. You’re the real champ in my eyes, but he can tell you’ve made me a better person. I know your parents thank me all the time for the things I do for you, but I just want to make it clear that there is an equal amount of thanks to you for the things you do for me. In short, thanks for continuing to be awesome, everyone can see it, not just me.”

  Second, he came to the hospital today (it’s now Thursday, I came in to the ER on Tuesday) and we hung out all afternoon and he said he loves me for the first time! He said, “I care about you so much,” and I said, “So do I.” And then he said, “I love you, Mallory,” and I said I loved him back!

  It was a beautiful moment. I’d been in severe pain all day with this pleuritic chest pain and really frustrated by the lack of coordination/responsiveness in my pain management. I’d also been feeling dejected about being back here again. But then Jack came and it perked me up, and we went on a walk by the fountain, and he said he loved me!!!!!!!!

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  Where I am with work/professional/creative endeavors:

  I’m editing David’s book. Want to stay on top of that and work faster but also do a very, very good job.

  I need to start thinking about what I want to do for my own book. So many people have reached out to offer to get me an agent or have it read by a publisher! I need to make something of this and capitalize on the fact that I’m starting down this whole transplant road and that this is the time in my life where shit gets complicated and interesting.

  My updates are scatterbrained because I’m on drugs (prescribed ones, of course).

  9/10/16

  I’m in L.A. now, came to visit my grandma, who was diagnosed with end-stage ovarian cancer. It’s just so sad. She and my grandpa were so much a part of my growing up.

  I’m feeling sad about so many things but also worried about transplant. I hope Pittsburgh has some redeeming qualities, I really do. Something to make me think that living there for a few years, potentially even dying there, wouldn’t be the worst thing in the world. I have to be able to find joy there, otherwise what’s the point?

  Today, I woke up before 10:00 a.m. (I’ve been waking up at like noon every day, so 10:00 a.m. is an achievement). I ate a normal breakfast (oatmeal, fruit, and coffee) and felt fine afterward, did treatment and worked on David’s book (reedited chapter 3). I felt focused, then went to work out at Grandma’s gym. (Fifteen minutes on the elliptical, thank God for supplemental oxygen, then weights, then foam rolled.) After that, I went upstairs and talked to Grandpa for a long time and visited with Grandma. Hanging out with Grandpa was really nice. I sat there with him and ate a frozen peach and listened to his stories of the old days.

  Going into Grandma’s room I started to get emotional. She said that now was the time she was supposed to tell everyone the last things she wanted to say to them, so she was going to tell me something. “Mallory, ever since you were a little girl, I’ve thought you were extraordinary,” she said. “But as you’ve grown up, you get more extraordinary every day. I’m so proud to be your grandma, and I claim no credit for how amazing you’ve turned out. But I love you so much and I’m lucky to be your grandma.” I started crying, because how could I not? Her diagnosis is so devastating.

  Being with them was very emotional and after I left, I didn’t feel like seeing anybody so I walked home (which was almost a mile, more than I’ve walked in a very long time). While I walked I listened to music and cried more. I was thinking about Grandma being sick, but also about what will happen to Grandpa when she dies, and what on earth he would do if we all had to move to the East Coast for me to get a transplant.

  I’m also not ready to say goodbye to my life yet—my friends and my social life, Maria, Micah, Kona, Grandma and Grandpa, Northern California crisp air and trees and routines, Southern California beach days and lazy afternoons. All the little things that make up the familiar. I’m not ready to transform my life yet.

  I was also thinking about how my mom doesn’t deserve to have a parent die and a daughter die close together in time, so I need to live a long time for her because she deserves better than all this sadness. I worry about how my dad would survive losing me. I don’t know if my parents’ marriage could survive that much sadness, and I think if I were to die, my main wish would be for them to lean into each other to get through it rather than pull away from each other. I would hope that if anything ever happened to me, it would bring my family closer together, not fracture them apart.

  9/11/16

  I’ve been thinking about the concept of “mind over matter” a lot lately as I try to reframe the way I view my own future. I’m working very hard to see beauty in a life that will look quite different from the one I wanted and expected. I’m trying to see adventure in the possibility of moving to Pittsburgh or Toronto even though I hate the cold, I’m not much of an urbanite, and I live for the ocean. I’m trying to see hope when the data tells me that people with my bacterial infection usually die on the operating table or within a year post-transplant. I’m trying not to think about how few years I might have left and instead focus on how much life I’ve already lived in the twenty-four-ish years I’ve been alive. I’m trying to focus my attention on the incredible, fleeting moments of joy—like sprawling on a couch with five of my close friends, laughing so hard I can barely breathe—rather than on the periods of uncertainty, fear, and anxiety. Those joyous moments are the ones I want to convert to long-term memory; the other ones I could do to let go of. Ruminating won’t help one bit.

  “Mind over matter” is a powerful tool to press the reset button, to change the narrative of a life, to see the sparkle of a gemstone in a mound of rubble. But it only works when we see our reality for what it really is, and then pick and choose which pieces of that reality to emphasize. It’s not about deluding ourselves by saying a life-threatening genetic disorder is not a disease; such rhetoric doesn’t help us, the disabled—it only helps those who are uncomfortable witnessing our health challenges.

  In September, I traveled to L.A. to see family and friends. In October, I will travel to Pittsburgh for a transplant evaluation and then celebrate my birthday. In November, I will go to L.A. again for my annual CF fundraiser (An Evening in Mallory’s Garden) and Thanksgiving.

  Throughout these months, I will continue working (part-time, from home). I will continue writing. I will continue to despise red Jell-O. I will hopefully stay out of the hospital for a while (no promises there), but I will continue on IVs. I will get myself back into the gym, into the yoga studio, or onto the streets to walk. I will probably not drink any apple cider vinegar, because it’s gross and it burns my throat. I will be utter
ly compliant with my treatments and medications. I will hope for the best and prepare for the worst.

  And, mostly, I will understand that I’m fighting a motherfucker of a disease, that it’s extremely hard work, and that I’m doing the best I can.

  10/2/16

  Last Thursday at midnight, after twelve hours of travel with six medical bags and an oxygen tank, my mom and I touched down in Pittsburgh International Airport. It was supposed to be the start of our Thelma and Louise adventure. In fact, it was the day from hell.

  Packing up all the mechanical and chemical paraphernalia that keep me alive was tough. We had to bring my vest machine, compressor, nebulizers, oxygen tank and its accessories, forty-plus pounds of IV medications, twenty-two different kinds of pills, and inhaled medications. With my foggy mind, limited energy, shortness of breath, low oxygen, and midday vomiting, it was a grueling effort. But we got it done, and Thursday morning we packed up the car to go to the airport.

  People often ask why B. cepacia is contraindicated for transplant. The reasons are multifaceted:

  1. Transplant centers need to keep their one-year survival rates above a certain percentage (80 or 90 percent) in order to stay in business: if they fall below national standards, their program risks being shut down. Transplant is a huge moneymaker for hospitals, so staying in business is a top priority. Taking on high-risk cases such as patients with cenocepacia can compromise outcomes.

  2. Lungs are a scarce commodity. There are not enough organ donors in the United States to supply lungs to all the people waiting. Many patients die on the list. Ethically speaking, I think it’s hard to give lungs to someone who doesn’t have a good chance of making it when they could go to a less risky patient with a higher chance of survival.

  3. Doctors are obligated under the Hippocratic Oath to do no harm. If the data shows that most patients with B. cepacia either die on the table or within a year after transplant, some feel it is more harmful to try the risky procedure than not to—even if not trying means the patient will die.

  4. The timing of a transplant is also complicated. There is a small window in which patients are eligible for transplant; they have to be so sick that they can’t live long without new lungs, but healthy enough to survive the operation. A patient can become too sick for transplant very abruptly, losing eligibility. Right now, given that a transplant for me would require a cross-country move, I’m in the window where I need to start the process, need to complete the full evaluation. If my health all of a sudden plummeted, I couldn’t just go to the closest ICU and get listed for transplant there, so I need to plan ahead.

  5. The timing of a transplant involving B. cepacia carries an additional layer of complication since cepacia and cenocepacia can cause “cepacia syndrome” at any time. Cepacia syndrome is a fatal, necrotizing pneumonia that can kill within days or weeks.

  The timing of transplant and the fact that it can only be done in Pittsburgh are important parts of the story I’m about to tell, a classic story of the big corporation screwing the little guy, of the large-scale forces at work in healthcare jeopardizing a patient’s life. For me, the story is new, but countless others have already lived this story. And, spoiler alert: it does not always have a happy ending.

  When we first got the call from Pittsburgh’s intake coordinator, she brought up the financial burden of transplant. The coordinator warned us that with our insurance, Blue Cross, we would undoubtedly face problems getting coverage for the evaluation (not to mention the transplant), since UPMC is not an in-network provider for them. They told us to start pushing Blue Cross immediately. It was about five weeks before the evaluation.

  My mom started the process. Predictably, Blue Cross wrote us a letter explaining that they would not provide coverage for an evaluation at UPMC because it was not an in-network hospital. They recommended that I seek care at Minnesota. Obviously, they failed to understand that I have zero choice when it comes to where I get my transplant and that Minnesota had already rejected my case. Dozens of phone calls ensued as my mom struggled to get past the lowest person on the totem pole, a woman who was tasked with delivering us the bad news and who had no power to change anything. She was the wall Blue Cross put up; unfailingly polite, she said no, no, no.

  Four times the coordinator would call and tell my mom that we needed to consider a particular center. Each time my mom would say they won’t take Mallory. Blue Cross would then say give us five days to check. Then they would call back, say my mom was right but that we had to try another Blue Cross–approved center. This obvious stall tactic set us back weeks.

  Finally, somehow, my mom got a verbal agreement from Blue Cross to issue the paperwork to provide a ninety-day authorization for me to see the transplant team at UPMC. They were not covering transplant, just the evaluation, but they confirmed that this was indeed an authorization.

  When they sent the paperwork, they wrote in the name of the wrong hospital (there are many hospitals in Pittsburgh). We asked them to correct it and to send the paperwork back again, and they said they would. Again, when the paperwork came in, the name was wrong—the hospital they wrote in is not even tangentially associated with UPMC cardiothoracic transplant.

  At this point, our suspicions were confirmed that Blue Cross’s bureaucratic obstacles were intentional stall tactics. Days and weeks were passing, and the date of my cross-country trip was getting closer and closer. We reckoned that the low woman on the totem pole was being instructed to do whatever she needed to do to prevent me from getting evaluated at Pittsburgh.

  All the while, I was in L.A. because of my grandma’s end-stage cancer diagnosis. I was sick and did not have the energy to keep track of this ongoing battle myself. Ever since I graduated high school, I’ve been fiercely independent when it comes to my medical care, handling all interactions with doctors, hospitals, coordinators, and pharmacies. But when it came to insurance, I just couldn’t do it. While I rested in bed, I heard my mom screaming on the phone in her office. She spent hours and hours during those few weeks fighting Blue Cross, precious hours she could have spent taking care of her own mom and dad.

  Blue Cross called back and said they had done the paperwork right, and they said (over the phone) that I was approved. I was good to go. They said they would send the paperwork directly to UPMC. Everything was set, as far as we knew; our appointments were scheduled, my transplant binder came in the mail, our flights were booked, hotel rooms reserved. We had won this first battle—or so we thought.

  But then, in the car ride to the airport for the flight to Pittsburgh, we were blindsided by a bait and switch so egregious it seems criminal. A woman who does insurance verification for UPMC called. She said that I had no insurance approval on file at UPMC whatsoever, and thus, that she would have to cancel all of my appointments for the upcoming week. When I told her that she was wrong, that I had already gotten Blue Cross’s approval for the evaluation, she got angry and hung up on me.

  My fatigue at that point was bone crushing, as if my limbs were lead and my head was filled with bricks. My mom took over, and her first call was to the lung transplant coordinator at UPMC who had been helping us. What is going on??? This was the essence of her side of the conversation: We started this process over a month ago. How can they promise us approval, and then withdraw that approval when we’re already on the way to the airport?? According to the coordinator, Blue Cross never officially sent in the authorization. They lied to us, pretended that it was taken care of when it wasn’t, and waited until the very last minute to tell us that we couldn’t ultimately get coverage, when it could have very well been too late to fix. My mom told UPMC that we were coming, insurance or no insurance.

  Hell hath no fury like a mom who thinks someone is getting in the way of her daughter’s transplant evaluation.

  As I sat on the first leg of the flight, headed to Charlotte, North Carolina, I stewed. I could not live with
the idea that I could potentially be going through such a grueling day of travel to end up in Pittsburgh with NO appointments. Beyond the implications for my own health, it made me wonder what happens to the patients who don’t have parents who are willing and able to draft 800-word emails, to scream at people on the phone, to threaten legal action (my dad) or a publicist’s wrath (my mom)? While in many ways I’m in a position of complete powerlessness at the hands of a company that cares more about their bottom line than about whether I survive (in fact, one that would probably rather I die, because it would be cheaper), I still have an advantage that many patients aren’t lucky enough to possess: two dedicated, tenacious, educated parents with the resources to fight the system.

  It occurred to me in a heartbreaking moment that the patients who don’t have that are the patients who die as a result of bureaucratic bullshit. It’s so absurd it makes me shake with rage. When you’re in need of a lung transplant, and the people on the other end of the line are intentionally trying to block you from getting lifesaving care, and you’re weary and you don’t have parents to fight your battles, you die.

  Studies show that cancer patients with bad insurance die at higher rates than their counterparts with better coverage. This sad reality is true of CF and transplant patients, too.

  No one would ever write in an obituary: our dearly beloved died from bureaucratic incompetence and corporate miserliness. But if obituaries were perfectly honest, many would probably say exactly that.

  We arrived at our hotel that night at two in the morning, and by the time I did treatment it was 4:30 a.m. Early the next morning my mom was up battling insurance again. I slept until noon, recovering from the stress of the day before.