It’s not the nurses’ fault—in fact, they’re super attentive, and the ones I had were very sweet. But the ICU policies make me insane when I feel like they are hindering my health instead of helping it.
I was psyched to get back to 5498. Natalie and Liana came to visit. When I didn’t have the energy to hang out anymore, I rolled over to take a nap. When I awakened I stood up to pee and wash my face. I stretched my arms overhead and it raised my heart rate a tiny bit…then I felt the familiar gurgling sound, and my heart just sank.
I only coughed up 10 ccs of blood but it was enough for my mom and the docs to freak out. I had been about to take a shower —they were going to change my port needle, so I’d had them pull out my extra IV, and I was more excited for that shower than I think I have been for anything in the last few months. It had been so long, I was caked in grime. I was smelly and hairy and dreadlocked. I needed the catharsis of the hot water and solitude. And I had been waiting patiently but desperately for forty-eight hours for that shower: it had been planned down to the minute, since with four IV drugs that each run for one to four hours, there hadn’t been a minute when I wasn’t hooked up to some IV. This was my only chance. I had a half-hour window locked and loaded but I coughed up blood right at the beginning of that window.
The doctor rounding said no shower. I started crying when he said that and so my mom nicely asked the doctor to think about the whole patient. She told him I was losing my mojo, that this shower meant more to me than he could imagine. He said he would send a colleague to check me out.
His colleague, Dr. Bierer, the ICU intensivist for the night, came by. We talked for a while. He said showering probably wasn’t a good idea because of the humidity. I said I didn’t have a problem with humidity and told him that I would sit down in the shower on a bench and that the care partner could be in there to watch me. I said, all my vitals are stable. He finally caved and said okay.
In the shower, I scrubbed off the grime and dead skin and anger. The washcloths were brown after scrubbing one limb! I sat on the bench and while I didn’t have the total privacy and solitude I craved, I had the hot-water catharsis I needed. It’s a reliable, dependable sort of healing. When I came out, I was rejuvenated and way less distraught.
They said if I had any more bleeding that night, they would move me back to the ICU. They said they thought it would be best to move forward with embolization. I fell asleep last night on NPO*4 assuming I would start hearing about the timing for embolization in the morning.
But when Friday morning came, I couldn’t drink my coffee, and no one came by. A couple of hours later I fell back asleep for three hours, and during those hours, I know my mom was harassing the nurse and the doctors, trying to get Interventional Radiology to come up and do a consult to figure out the procedure time. After getting nowhere, the resident under Dr. Paull told my mom that I could eat because it was Friday afternoon and the procedure probably wouldn’t happen. He said they wouldn’t want to do it so close to the weekend. My mom was rightly pissed. She asked my nurse to page Dr. Paull just as the IR team came for a consult, so I woke up.
Dr. Lee, the IR head guy, started talking about all the risks of the embolization procedure and how I don’t meet the standard guideline of 240 ccs hemoptysis all at once. He said, based on the risks and the fact that I wasn’t having life-threatening, emergent hemoptysis at that time, he didn’t recommend the procedure. Eshaghian was my main doctor and as the head of CF she knew more about this than anyone else.
I made Dr. Eshaghian’s case for her: I’ve had over 240 ccs hemoptysis cumulative over the course of a few days and so have had to stop all treatments. The chronic, lifelong infection will never go away; we’ve been aggressively treating my infections with antibiotics, but they’re not really working, and I’ve been in and out of the hospital for months. And the longer I go without treatments, the worse the infection gets, and then the worse the bleeding gets. He heard me out, then Dr. Paull came in and explained to Dr. Lee that my doctors were recommending the procedure, and then Dr. Eshaghian got on the phone with Dr. Lee and explained her thought process and why she really thought I should get it done.
Finally, they said, okay, we’re doing it. A few hours later, I got wheeled down to the O.R. I was nervous but also excited to get it over with. Dr. Lee was very nice and said he was going to take very good care of me. A nurse named Jason told me he was going to be responsible for my anesthesia, monitoring my vitals, etc. He told me I wouldn’t be fully asleep because they’d need to communicate with me during the procedure, but that he would make me comfortable.
At one point they had to pull my pants off and expose my whole lower half, naked on the table, and one of them apologized that the room was all men. The reason for removing my pants was to go through an artery in the groin to get to the lungs. At that point I felt very scared and stressed out. I was in a cold room on a skinny table (a table that felt too skinny even for me). I was alone in a room full of men, with my vagina completely exposed. People were coming in and out and getting ready, and I was just naked, getting my groin area cleaned with betadine. I was struck by the absurdity of it. Thankfully Jason came and gave me IV Benadryl first, then they got me sort of covered up with a sterile tent thing, and then they gave me either fentanyl or Versed, I don’t know which one.
The whole thing took over three hours. By the end I was fully awake and had to go through the nudity thing again. The IR fellow had to close up the incision with this collagen injection thing that was pretty uncomfortable, then he had to hold pressure on it for a long time, and all while I was exposed. He talked to me throughout the time that he was applying pressure, which distracted me, and he explained what he was doing as he closed the incision.
Eventually Dr. Lee came back and checked my ability to move, making sure I wasn’t paralyzed. He told me the procedure went well. He said that although he had been hesitant in the morning, after going in there, he was sure that it had been the right thing to do. He embolized five blood vessels, I think, more than he thought he would have to. The only complication was that a piece of wire broke off. He said it shouldn’t cause any problems because it’s in vessels that are now dead anyway, but he had to keep me informed and he was going to write to the company about it because pieces of wire should not be breaking off inside the body.
Then they put a dressing on my wound, got me clothed, and I said goodbye to them all. They were a good team and I would give them five stars if one reviewed surgical teams on Yelp.
Overall, I’m extremely relieved the procedure is over. Pain is a small price to pay for the certainty of knowing I won’t bleed from that spot anymore or have to go back to the ICU, for now, anyway.
1/12/16
In some ways what’s going on feels like déjà vu. It reminds me of my senior year of high school. The parallels are that I’m at UCLA, my docs think I might have cepacia syndrome, I’ve been on IVs for a long time, I keep losing weight, and we’re talking about transplant.
Beyond these similarities, this feels like uncharted territory. For one thing, I now judge people for the things they say when they’re just trying to be nice (don’t worry, it will get better! or other similarly clueless comments). I explode at my mom for little things and am always on the verge of tears. I’m glued to Netflix for mindless time-passing; Facebook; Instagram. Yet I can’t bring myself to do anything actually productive (like journaling more, or writing something publishable, or doing actual work that I could get paid for).
The truth is I’m scared. Not in the active acute way you’d be if a rapist were chasing you, but in a chronic, subconscious way that eats at my identity. If I went back and read my journals from sophomore and junior years at Stanford, I’d probably see identical language—about loss of identity, loss of purpose, fear, depression. But thinking back to that point, I was living on campus, going to classes, getting good grades, and I was constantly surrounded by
people, so even though I felt extremely lonely and scared, I was moving forward in life. Now my life is completely stagnant. I’m losing time. Not moving forward toward anything. Not getting stronger from all the things that supposedly “don’t kill you but make you stronger.” I feel like each individual blow is weakening me, and collectively they are causing the foundation of my being to crumble.
None of this reflection feels fresh, it’s the recycled dregs, the churned-up feelings that I’m now realizing are familiar. They’re the feelings I have and the words I use whenever I’m going through a period that threatens the idea of my future. When I feel the weight of my mortality crushing me, making me wonder if there’s anything left in me besides the identity of “sick girl.”
In micro moments I can be okay. I woke up this morning feeling fairly optimistic—my pain was not horrible, and my O2 was good. I drank my coffee, read my book. Then I coughed up 10 ccs of blood—which scared me. Another day of withholding treatments.
When Dr. Eshaghian came, we talked for a long time about whether to resume ataluren or not, about the bleeding, about my need for a blood transfusion.
For a few days she had asked me to hold the ataluren since she wasn’t sure if it was associated with the bleeding. But then when I kept bleeding after being off it a few days, she said she was okay with me going back on it.
The ataluren question still weighs on me. On the one hand, I don’t want to ignore Dr. Mohabir’s advice. I think his word is the word of God: when he told me not to move to Hawaii, which I had my heart set on, I changed my entire postgrad plan. I trust him with my life. If I were dying, I’d want him on the case. And he’s telling me that he wants to abolish ataluren from my medical regimen. His argument is that there’s not enough evidence to rule out ataluren being the cause of my hemoptysis or increased complications. The problem is I’ve tried it twice and both times was so much better. Dr. E is open to continue using it since I seem to do better on it.
1/29/16
Tomorrow marks four weeks within hospital walls with just a few days out. This unexpected and lengthy hospitalization knocked the wind out of me (double meaning intended). In the first three days of the new year, I spent hours reflecting on the previous months of sickness and anchoring myself in the belief that 2016 would be “better.”
Since 2015 took the reins away from me, I was determined to get them back. I wanted to go back to living in my apartment in the South Bay, working as a freelance writer, surfing and playing volleyball in my spare time, and fighting every day for continued health. My understanding of the impermanence of circumstances was the beacon that got me through 2015.
But CF is not impermanent. This or that particular hospitalization was—the one where I could work out in the courtyard, the one where I was bedridden; the one where I had many visitors, the one where I refused company; the one where I laughed and ate and walked and did headstands, and the one where my pain and breathlessness stole my vitality. But since I’m not an idiot, and since humans have the ability to make reasonable predictions about the future based on past experiences, I know that variations of these situations will always be a part of my life. And that’s the hardest fact I have to grapple with in scary times.
My fight for control over CF is a struggle I will always bear, no matter how much my experiences tell me it’s a fruitless one. Each year when most people tell themselves they’re going to join a gym or eat healthier or lose weight, I tell myself that I’m going to have a less tumultuous year coexisting with my illness.
2/3/16
During my lengthy hospitalization, the dark voices in my head, brokers of hopelessness, were countered by conversations with Danielle. Never a dealer in unwarranted optimism, she validated my fears and offered some much-needed perspective. We discussed advanced care planning and my end-of-life preferences, as I watched CF friends reach the cusp of death while facing life-threatening complications myself. Danielle told me about Voicing My Choices, a tool for patients to express what would be important to them at the end, should they not be able to communicate themselves. I learned how to effectively manage pain from her and how to advocate for my own palliative care needs with the doctors at my hospital. We talked about grief and fear and coming to terms with a prognosis that’s dire and scary. She slept on a chair in my ICU room many nights, driving after work from one hospital to stay with me in another.
The details of many of our most significant conversations during the darkest time are lost in an opioid-induced haze, but the emotional impact of having a friend who does palliative care social work will always stay with me. Danielle is able to apprehend my concerns, and challenges me to conceptualize my circumstances in new ways. One night, as we talked about death and the impact of dying on family members, she gave me an apt metaphor for a coping mechanism: compartmentalizing grief and fear into a box, with a lid, and then opening and closing that box. It’s healthy to open the box sometimes and explore and sit with those feelings, but then to be able to close it so that the darkness doesn’t cast a shadow over the time one does have left.
She was able to listen and offer wisdom in a way that normal friends cannot; hard as they may try, most will never understand what it means to live with an invisible fatal illness. The balance of validation and perspective that comes from someone who’s seen hundreds of families going through similar struggles helped me simultaneously accept the probability of more pain in the future and feel more grateful about what health and time I have left.
2/4/16
This January will be remembered as the month of ten-ish bouts of serious hemoptysis, worsening and severe anemia, one blood transfusion, three rounds of IVIg (immunoglobulin therapy), two doses of FFP,*5 two bronchial artery embolizations, a large hematoma (a complication of the embolization that left me bedridden), severe pleuritic lung pain, around-the-clock opiates and nausea medication, vomiting, an inability to eat for two weeks, two bronchoscopies, two CT scans, many X-rays, discussion of transplant, two stints in the ICU, five hospital rooms, and over a dozen caring and brilliant doctors on my case.
It’s been eventful!
Throughout this medical saga, I have relied on so many capable doctors and nurses and care partners to get me through. Ashley, the nurse who washed my hair in the ICU when I couldn’t get out of bed, went so above and beyond the call of duty, she should get a gold star and a raise. In this hospital I’ve called home for so many months, I see housekeepers and transporters and EKG techs and care partners and nurses and cafeteria workers/cashiers and families of other patients and attendings/fellows/residents that all cheer me on as I walk in my halting and slow way around the floors and courtyards. I saw a family member of another ICU patient in the elevator and she flashed a huge smile and gave an air high five at the sight of me walking, sans heart monitor, oxygen tank, walker, and emergency wheelchair.
With my discharge planned for this coming Monday, I think about rejoining life beyond the hospital’s walls and am struck by that most banal of observations: no matter who we are, our time is limited. There’s no time not to enjoy every single day, because the days go by so damn fast. One-twelfth of this new year has passed, and I have eleven-twelfths left to take control over my life’s narrative.
We are the writers of our own story. That our story will someday end is inevitable for all of us, but the way we get there is not. The piece that’s often lost on us, though, is that our level of control extends to how we react to situations, not necessarily to the situations that arise. My effort to thread that awareness into my narrative begins with this understanding and will continue with each and every moment I decide to love the present instead of pining for lost opportunities.
Instead of trying to enforce health as a New Year’s resolution, I will try to enforce an unwavering embrace of the messy, impermanent, underrated present. I’m ready to rejoin my other life, but this hospital life is not the worst.
2/10/
16
One of the things I worry about now is opiate dependence and the fact that pleuritic chest pain will probably be a part of my life in all my future exacerbations. Growing up, severe pain was not a problem for me. The first time I started having serious chest pain was when I had pulmonary emboli…so for a while after that, I was always worried about either an embolism or a pneumothorax (collapsed lung) when I got severe chest pain. But now, for the last six months, I’ve had chest pain as a regular part of my symptom list, usually correlating with pneumonia.
The pain that comes is so severe, I can’t do anything—can’t think/breathe/move/sleep because there’s no way to ignore it. It makes me curl up into a hunchback, trying to take shallow breaths so that I won’t feel the pain. It’s horrible. And it can last for days, a week, two weeks. This past hospitalization, when I had two weeks of severe pain from the hematoma, followed by another week of severe pleuritic lung pain, I was on high doses of opiates for three weeks. We tried a bunch of different combinations, including the opiates morphine, Dilaudid (hydromorphone hydrochloride), Norco (Vicodin), Oxycontin, Percocet, etc., and then other non-opiates like increased gabapentin (for nerve pain), lidocaine patches, and a muscle relaxant.
The pain management team consisted of a really sweet attending and a terrible fellow. The fellow seemed skeptical of my motives and my pain. He kept telling me that it was going to be really hard to get off the drugs and said he didn’t want to increase my dose when my pain was bearable because it would threaten my eligibility for transplant. Which is an INSANE thing to say to someone who is in severe pain and who isn’t even ON a list for a transplant anywhere—someone who may not be eligible for transplant at any point in the future because of resistant bacteria or too low of a BMI (body mass index).
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