When I finally woke up and started treatment again, I heard her screaming on the phone to the same low woman on the totem pole who’d been with us throughout the entire process. We had gone from thinking of her as helpful savior to corporate traitor. But that Friday, she gave us a piece of information that confirmed for us that, even if her hands were strapped behind her back, she was on our side: “Every single phone call has been recorded,” she said. “You can request transcripts.”
Ultimately, the woman who had been trying to help us was able to connect my mom to a higher-up at Blue Cross. We had been ringing the alarm bells for long enough that word had traveled up the food chain. My mom told her she was going to request transcripts of every single phone call, every single conversation; that my dad would take legal action if they didn’t immediately grant the authorization; and that, if I couldn’t be seen at UPMC the next week because I didn’t have the authorization, she would be on the Today show first thing Monday morning to out Blue Cross for what they’d done.
During this nightmare, we discovered that a very close friend of ours is a close friend of a board member at Blue Cross. We drafted an email describing in great detail every single step of the process, and, incredibly, he said he would reach out to his contact. By the end of that long, hard first day in Pittsburgh, and after weeks of fighting, weeks of going in circles trying to get what we needed, we heard the magic words: I was approved—not just for the full evaluation, but all the way through transplant.
We don’t know if my mom’s threats made them change their mind, or if it was the favor called in by our incredible friend, a friend we now call our Godfather. Behind the scenes, the problem was resolved, and by Friday at 4:00 p.m. before Monday’s evaluation, we knew that everything would be okay. It was as if we had been held underwater for a long time, and we could finally come up for air. It was a full-body decompression. Relief doesn’t even begin to describe the feeling.
What saddens me about the situation, though, is that I do think it was our Godfather who fixed everything. It worked out beautifully for me, and I will be forever grateful for that favor; there’s no way to repay a favor that could end up saving my life. But I know that others who have been in my situation, people who didn’t have a hero to step in and save the day, would have gone to sleep that Friday night with no authorization; they would have had to cancel their evaluation; they would have turned around and gone home without being seen; they might have died because they couldn’t get insurance approval for an evaluation or a transplant. It’s not right and it needs to change. It should not be this hard for anybody.
To quote the wise words of Metallica, I just have one thing to say to Blue Cross: “Don’t tread on me.”
And to all people fighting insurance battles and fatal illnesses, words from high school English class (Dylan Thomas) are fitting: “Do not go gentle into that good night…Rage, rage, against the dying of the light.”
10/12/16
I got the best birthday present ever—UPMC officially accepted me for transplant but said I’m too healthy to move to Pittsburgh now. The evaluation had been a grueling week of meetings with doctors, surgeons, social workers, pharmacists, and financial people to make sure I met all of the criteria for transplant, and all sorts of medical tests, blood draws, imaging. It was one of the most emotionally challenging and physically difficult weeks of my life but there was a payoff!
10/31/16
Jesse sent me the lyrics to her song “Clear Lungs”!!*1 It’s perfect:
I may fly lower with my broken wings
But I smile brighter every time I soar
Sometimes I worry if I dream too big
I will shatter like glass
That chasing more freedom could poison the rest
And I feel wasted
And I feel tired
And I feel lonely as I
Watch friends disappearing
And strain in these shackles
That chain me to routines
Keeping me alive
To breathe once
With clear lungs
But I’m stuck on this line
White masks surround me on every front
Make me feel guilty when I want to run
No second chances, all about percent
Every drop in that sign
Isolates me from a normal life
And I feel wasted
And I feel tired
And I feel lonely as I
Watch friends disappearing
And strain in these shackles
That chain me to routines
Keeping me alive
To breathe once
With clear lungs
But I’m stuck on this line
Don’t wanna drown in myself
Sixty pills a day, 23 hours to health
Got this countdown running in the back of my mind
Hope for normal
Just wish for normal
I may fly lower with my broken wings
But I smile brighter every time I soar
So I’ll feel wasted
And I’ll feel tired
But I’ll feel lucky as I
Live my life with meaning
And strive to be happy
Find beauty in the simple things
Most people fail to find
And breathe once
With clear lungs
Till I jump off this line
11/5/16
I think I need IV iron. This severe, ongoing fatigue is messing with my head.
My brain is different. I don’t know if that’s due to chronic lack of oxygen, but my memory is shit now, my concentration is terrible, and I’ve lost my ability to juggle multiple pieces of information. My processing speed is so much slower, too. That’s another thing, when I’m exhausted and anemic and short of breath and high on Marinol, I don’t have a gregarious personality. I kind of just recede and watch what’s going on around me since it’s easier not to talk, and easier to lie or sit down than to stand up. Maybe it’s the mono. I think I forgot to write that they figured out that’s what’s been going on with me.
11/12/16
It wasn’t always this way. If I was the object of others’ staring in the past, I could assume it was because of my six-foot stature, so rare for a woman, people in the street would tell me. Once, in high school, I was swimming at a local community pool in Maui during spring break, trying to get back in shape for swim season in the wake of a hospitalization. A photographer there asked if he could use a photo of me swimming for a fitness magazine. I chuckled, noting the irony, but still taking my healthy appearance for granted, assuming it would last as long as I did.
For so long, while cystic fibrosis took its toll on my lungs, my pancreas, my bones, my liver, my intestines, and my stomach, the illness was invisible. It was so invisible that I could have written pieces on the difficulty of trying to get disability accommodations while looking perfectly healthy, the frustrating process of making the severity of my disease known to the skeptics on the other side of the negotiation. Those skeptics were the people who would ensure that I got through school without failing out for excessive absences and tardies; they were the people who would let me board early on airplanes, but rarely without a disapproving glare; they were the people who could either grant me the ability to work without compromising my health, or deny it.
Though having an invisible illness presents its own unique set of challenges, now I pine for the days when I could still walk down the street and blend in. I pine for the days when I could choose to hide my disease.
Now that my disease is visible, it creates walls between me and those around me. The IV pumps in my purse connected via long plastic tubing to the Mediport in my right chest are an in
stant spectacle. The nasal cannula connected to my oxygen tank, oxygenating my blood in ways my own body can’t, is another spectacle. In short, wherever I go, I am a spectacle, and it’s tiresome.
On election night, I went to a party at Talia’s. There were about thirty people there, packed tight into a San Francisco apartment. People stand on their feet at these types of things; that is so hard for me, these days, even with oxygen. I meet people and I see the way their eyes jump from nasal cannula to oxygen tank to Mediport to IV tubing, the way pity swells inside of them as they realize that this is my life. I know many are wondering—does she have cancer?
There are other signs, less obvious than the equipment to which I’m tethered, perhaps noticeable only to a keen eye. The subtle thoracic kyphosis,*2 which worsens by the year. The edema in my ankles, a sign of mild heart failure. My disproportionately large rib cage and upper torso compared to my chicken legs and noodle arms. Clubbing, common in CF, characterized by curved and bulbous fingertips and toes. My pale skin, a trademark of the iron-deficiency anemia my doctors are too afraid to treat because iron can feed the infection in my lungs. My labored breathing, so loud it can’t possibly be ignored. My periodic winces, from pleuritic chest pain or stomach cramps or migraines. The dark brown staining around my teeth, a result of the enamel being destroyed from months of frequent vomiting. The bald patches on my head, which became noticeable only after I’d become anemic and malnourished. Blue nails, deprived of oxygen. The blank look in my eyes when I can’t follow a conversation because of the Marinol pills I have to take for appetite stimulation and nausea. The coughing spells that often hit when I laugh, which are painful and sometimes lead me to avoid laughter altogether.
Soon, I may have to get a feeding tube, a gastrostomy-jejunostomy tube (G-J tube). The tube bypasses the stomach and feeds liquid nutrition directly into the small intestine, ideal for patients with a lot of nausea and vomiting. I can’t eat enough to keep up with my body’s nutritional requirements. It will be yet another piece of medical equipment, surgically implanted into my body, just like my Mediport. It will help save my life, but it’s yet another way my previously invisible illness is rendered visible.
All of these identifiers are walls that separate me from meaningful interaction with the people around me. People do not know what to say. I don’t blame them; I wouldn’t, either, were the roles reversed.
I pine for the days before those walls existed. I pine for the days before I had to tug my leash around, the twenty-five-foot tubing connecting me to my home oxygen machine. I pine for the days when I could play a beach volleyball match, and people would just assume I had a cough or a cold. I pine for the days when I could swim, surf, hike, even just sit there, comfortably. I pine for my invisible illness, now that it has turned visible.
11/13/16
This past week has been super hectic. Today is Sunday. On Wednesday, I went to clinic at Stanford. We discussed lots of problems: newfound swelling in my feet (possibly a sign of a blood clot, which we ruled out via ultrasound, or heart problems), continuing fevers, round-the-clock oxygen use. We talked about when to move to Pittsburgh, my weight, and their desire for me to get a G-J tube. The one thing we didn’t discuss is that I think I have a partial obstruction. I wasn’t as certain about it then as I am now; now I’m almost positive. At clinic I didn’t want to tell them my concerns because I thought they would immediately test and treat me, which would mean an admission since I haven’t been able to resolve blockages at home. And it was important to me to stay out of the hospital because the next day was Jack’s birthday.
As it turns out, on his birthday I had a fever so we stayed inside while I drank hot tea and curled up with a blanket. I gave him his gifts: a North Face reversible flannel shirt-thing, Birddogs shorts (his favorite), and a framed picture of the two of us. He genuinely loved the gifts, which made me really happy.
We had a really intense conversation that night. He cried. He told me that his dad said to him, “You know this relationship is going to have a tragic ending, right?” I don’t know if his dad was referring to us breaking up when Jack gets a job, or to me moving to Pittsburgh, or to the pain of watching me get sicker, or if he was talking about me dying. He could have been referring to any of those possibilities. I didn’t ask because I didn’t think he would want to say aloud, “He was referring to the fact that you will probably die at some point and that will be tragic because of how much I care about you.”
It’s at times like this that I realize how much he cares. The fact that sometimes it seems like he doesn’t care is a function of compartmentalizing; he cares so much he can’t NOT compartmentalize, otherwise he wouldn’t be able to function. And to some extent, I do the same thing. I’m not constantly tormented about my disease; I wouldn’t want him to be, either. I need to realize that when he does not seem the most empathetic, it’s not for lack of caring but rather for lack of experience dealing with tragedy and hardship, and an inability to figure out how to comport himself in times of crisis/sickness.
The next day was Friday. I lay low during the day except for an interview with some people from Stanford Hospital. They’re writing a piece about me to send to donors that will appear in their magazine. Thank God they came to Uncle Danny’s house, because I was not well enough to go out.
On Saturday, I was supposed to go out to lunch with Jack’s mom, Val. Because of my horrible night of sleep and how bad I felt in the morning, I knew I had to change the plan. We ended up having her over to Danny’s house and my mom threw together a small wine and appetizer party and it was really nice. Since I was feverish, I drank tea and curled up with a blanket. And lots of people were coming and going—Aunt Lissa, Uncle Danny, cousins Sarah and Hannah, etc. It felt like a full house. Val was so nice and not intimidating at all.
When they left, I started to feel worse. It was a really bad evening. Spiked a high fever (I think it was above 103, but by the time I checked, it had come down to 102.4). I felt truly horrible, just lay there on the couch, shivering, with heating pads all over me, drinking the hottest tea, until I fell asleep. The scariest part was that at some point in the middle of this delirium, I felt extremely depressed and just so weary, like I couldn’t go on any longer. I thought to myself, if I’m going to feel like this, I can’t keep persisting; I can’t do it anymore.
At a certain point, a person breaks. My mom is having to do everything for me while I’m just trying to exist. I’m toxic to the people around me and my body is toxic to myself. I thought about what it would be like to just not exist anymore. Not to kill myself, obviously; I would never do that. But I just thought, What if I did have some kind of heart problem and just went to sleep and didn’t wake up? That thought was even more stressful to me than the idea of living with sickness because of what it would do to my family.
So I will persist. But something needs to change, something needs to improve, if not with my actual health, then at least with my palliative care to keep me more comfortable as I struggle. Marinol is a good first step, but I’m sure there are other things that could be helping.
12/1/16
Need to write about what happened after reaching the glorious acceptance by UPMC. A viral infection pushed me off the summit. I free-fell into the deepest abyss of illness I’ve ever faced. A spate of complications drove me to panic: severe fatigue (which fourteen hours of sleep a night couldn’t reckon with), complete loss of appetite, incessant nausea and vomiting, respiratory distress with any amount of exertion, and oxygen saturations plummeting into the 70s when I changed clothes or walked to the bathroom (they are supposed to stay above 90 at all times). When I went to the emergency room on October 28, I collapsed in the waiting room walking to the check-in desk. A week later, when I got discharged, I hardly felt better.
Then Jack’s b’day, which I wrote about.
Then Sabrina came to visit from Philadelphia, and I spent most of the time asleep. I accru
ed more worrisome symptoms: strange lumps that I worried were tumors and swelling of the legs and ankles (edema with pitting). My heart thrashed around inside my chest, feeling like a fish trying to escape a fisherman’s hook.
Stanford told me to come in for an echocardiogram, which showed mild heart failure. They wanted to admit me right then, that Monday before Thanksgiving, and told me I should not plan on going home (which meant I’d miss both Thanksgiving and Mallory’s Garden). Thanksgiving is my favorite holiday and I was desperate to be at the fundraiser so my mom suggested we call UCLA and ask for a direct admit—which Dr. Eshaghian was willing to arrange. We left straight from the echo test at Stanford, flew to L.A., and then my dad picked us up and took us straight to a room at UCLA Medical Center in Santa Monica, bypassing the ER.
I spent the week there but was discharged in time for our twenty-first annual CF fundraiser. There, we announced our departure and said emotional goodbyes to our community. But then, three days later, we got another call from the coordinator at Pittsburgh, explaining that the team there had changed their mind. Once they put all the pieces together in their transplant meeting—the mono, the heart problems, the timeline of my decline—they realized that if mono was causing most of these problems, then when the mono went away, I might be too healthy to be ready for transplant. They did not want me to move all the way to Pittsburgh just to get healthy again a month later and have to turn around and go home.
More important, they couldn’t list me for transplant with mild heart failure without listing me for a heart AND lung transplant. No one wanted to do that, since I had a perfectly healthy heart up until I contracted the mono. The Pittsburgh doctor’s decision was that I should wait until the mono cleared and until the heart function improved; at that point, we would determine if it was still the right time for me to be listed.
By the time I heard the news of their change of heart, two days before Thanksgiving, I’d ridden an emotional roller coaster trying to come to terms with the idea of moving to Pittsburgh. And I finally had. In fact, I’d done such a good job of coming to terms with it that when I found out they’d changed their mind, I was devastated; I’d actually wanted to go to Pittsburgh, I realized. In order to get better, in order to get a transplant and live the life I want to live, I have to get worse. I have to pay my dues. I have to move to Pittsburgh. I was ready for that next step. But it was a false alarm.
Salt in My Soul Page 22