The free fall

The fireproof door groaned open, and she waltzed in, all smiles and ginger hair and self-assured frenzy.

“You’re looking much better,” she announced. “We’re ready to send you home later today!” The look she gave me seemed loaded with expectation: that I would be thrilled at the news, grateful for the quick discharge, ready to resume my life beyond hospital walls.

I was not. Not any of those things.

****

He walked in with his head down, glancing at the pulmonary function test results before making eye contact. The visit was brief. She explained her symptoms, her feeling that things were not going well, her worry that she was not improving. He told her that not much had changed, and that she should go home and wait, come back if things got worse.

****

One Monday morning, I woke up in my apartment with the pain of a thousand knives collectively stabbing my left mid-back, my left lower lobe. An eight or nine on the hospital pain scale — I reserve tens for being hit by a truck.

My breaths were shallow and quick as I labored to get enough oxygen. After stumbling out of bed I walked to the coffeemaker, panting and hunching over with my elbow on the counter when I got there. Fuck, I thought to myself. I can’t do this. Whether I can get up and make coffee in the morning is the most meaningful metric to gauge whether I’m healthy or not.

“Mom, I need you to drive down,” I said over the phone, sprawled on the bed, searching for a position that would enable me to breathe better. “I’m in pain.” I tried not to cry, but my voice cracked. She didn’t notice.

An hour later, she arrived. I was drugged up on Vicodin, but deep breaths and coughs were still excruciating. I’ve suffered from blood clots in the lungs in my medical history, and the shocking pain of this mundane Monday morning mimicked the pain of those days spent in the ER, discovering infarct and emboli.

It occurred to me that I might have another embolism, and that another day in the ER might be in order. A few hours later, I was on my way to the UCLA hospital in Santa Monica, to find out if (medical) history was repeating itself.

Imaging tests done in the ER showed no pulmonary embolism, and no collapsed lung. But the pain did have a cause: multi-focal pneumonia throughout the lower lobes, with a cavitary lesion on the left side. I had finished a course of IV antibiotics just two weeks prior, and there I was, even worse off than before and ready to begin anew.

*****

She tried to take walks, but had to stop every few steps to cough. She got lightheaded and dizzy going up the stairs to the bathroom. She went back to the hospital, to the pulmonary function lab, despite the doctor’s reassurance that she was okay. She had to be wheeled in, so she didn’t waste her energy for the test.

Her lung function was 19%, down from her baseline of 39%. It’s a dangerously low number that rang the alarm bell for a different doctor who was on-call. She was admitted, cultured, started on an aggressive regimen of four IV antibiotics to treat the new mycobacterium abcessus she was growing.

A few days later, she awoke in the middle of the night, disoriented and confused. Blood tests revealed dangerous levels of carbon dioxide in her blood, so she was rushed into surgery to get intubated and put on ECMO, a device that filters carbon dioxide out of the blood. Once intubated and put on ECMO, a patient has a tiny window to receive a lung transplant before becoming ineligible; and the chance of recovery without a transplant is slim to none once you’re on life support and in respiratory failure.

She’s conscious, but dying. She needs those lungs. The downward spiral happened so fast.

****

When the hospitalist assigned to my case told me I was ready to go home after three days, I knew she was wrong. In my gut, I knew that despite my outward appearance of normalcy, my lungs were still embroiled in battle. My body was still crushed with fatigue. And all going home would mean was continuing to undergo the exact same treatment and therapy as in the hospital, but being responsible for all of it myself with no help.

I spent just three days in the hospital, followed by almost two weeks of providing at-home IV care for myself. Then it was time to be done, and I went back to my life. Two weeks later, that crippling pain arrived, bringing with it the distinct understanding that someone had fucked up my treatment in a grand way. You don’t recover from a pulmonary exacerbation only to develop pneumonia (significant, severe pneumonia, according to the doctors) just two weeks later, unless the treatment wasn’t right. The fuck-up, I think, was a doctor thinking she was doing right by the patient sending her home to recover, when in reality, being sent home before you’re ready is a terrifying prospect. And then, the second fuck-up was in not listening to me when I said I wasn’t ready.

Now, a month and a half after that day when sprightly doc discharged me too hastily, I’m in the hospital again, far worse than I was when I was first admitted. The depth and frequency and force of my cough is frightening, as is the seemingly inexhaustible well of sticky, green, infected mucus I’m producing and expectorating.

All I can think about is her. Even as I’m slowly improving, weaning off the oxygen supplementation, beginning to get up and walk and stretch my legs, hearing promising reactions from doctors that listen to my lungs, I know that it could’ve gone the other way. Could still go the other way, this time, or any time in the future.

We can’t fully blame a doctor that sends us away, that thinks we’re exaggerating our symptoms, if we end up far sicker than before as a result of being sent away. We have to blame the disease, the disease that tries to define us, the disease that none of us asked for, the disease that’s killing us, the disease that, no matter how brutal, binds us together.

I’m Mallory and she is Melissa and the doctor we love is Dr. M. Despite that the disease is at the root of all this, is the only thing we can truly blame for what goes wrong, any doctor that downplays our battle is not to be trusted, especially now, after the plummeting free-fall that left Melissa on life support, and the treacherous tumble that’s had me on IV antibiotics and fighting pneumonia three times in a month and a half.

****

2015 has been a tough year for the CF community. Just over a month ago, I lost a friend to the disease, and now, as a non-believing person that does not pray, I’m praying for Melissa. Other patients have said it’s been an unusually brutal year, and they too have lost friends to CF.

The image that materializes for me is that of a web, a fragile web with many interconnected people all fighting the same fight. When someone is lost, we all feel the effects, rippling through the network, upsetting the sense of calm that was always an illusion to begin with. We all think about them, and how much we’ll miss them, and the loved ones that survive them; but we also think about what it means for ourselves, what we can learn from it, how we can grieve and cope while continuing to care for ourselves.

For months, Melissa and I talked nearly every day. I worried about how sick she was feeling and for how long, but it never once occurred to me that on my 23rd birthday she would be on life support, and I would be in the emergency room, gasping for breath, begging for relief. It’s weird to not be able to talk to her throughout this mighty struggle.

But she is mighty, and she will struggle, and she will survive. New lungs will come. And I, with the help of powerful drugs, will beat back the bacteria inflaming and infecting my lungs like one would hack down forest undergrowth with a machete. I have to believe that. For her, for me. For all of us.