This Is Your New Normal

A life-changing diagnosis and what it cost me.

Last December, I married my boyfriend of five years and had an amazing time being reunited with family members and friends, some of whom I hadn’t seen since I graduated from college in 2009. It was a fantastic experience and I felt like it was an omen of all of the good things and positivity that awaited us in 2016. We were excited to start living our married life, as well as have time to catch up on all the things we’d been neglecting for the previous year while we planned and paid for the wedding.

First on my list was to finally go to the doctor about this cough that I’d had for the previous year (yes, literally a year) and see if they could tell me what was going on or give me some medicine to fix it. Friends and family members had been telling me to get it checked for months, but my job offers extremely limited time off and I needed to save every hour I could just so that I could take a week off for my own wedding. Anyway, the cough was probably no big deal.

In January, a plague started tearing through my office. It eventually got just about everyone, and I was no exception. I finally made an appointment with a doctor because now, on top of the cough I’d had for a year, I also had the most horrendous head cold of my life. I went in and explained what I had going on, and my doctor sent me for a chest X-ray. She told me she’d call me the next day with the results, because it was late in the day and they probably wouldn’t get them back before her office closed. By the time I got home from having the X-ray done, she was calling.

Based on the X-ray, it looked like I had pneumonia in both lungs and she was going to start me on antibiotics immediately. She said they couldn’t tell how long I’d had it, but that it’d been at least since an urgent care visit the previous September when they’d also said I had pneumonia and had given me antibiotics and some steroids. My doctor told me to stay home from work for the rest of the week and get some rest — but this was a Tuesday in January, and at the time my job only allowed you to miss 45 hours of unpaid time during each calendar year (it’s since gone up to 50). I debated with myself, and ended up calling a friend who also works with me. We talked about it and decided that if I’d really had this since September, I’d already been working all that time, so what would three more days hurt? I finished out that work week and told myself I would rest on the weekend.

Over the next several weeks and months, I went back to my primary care doctor for a follow-up and then was referred to a pulmonologist. He initially sent me for blood work, a CT scan, a pulmonary function test, and an ultrasound of my heart because I had an elevated resting heart rate (later found to be a result of my heart compensating for the damage in my lungs, keeping my body oxygenated).

This was the point at which the financial impact of this whole thing really started to hit me. During our open enrollment the previous fall, I’d opted for the basic insurance offered by my employer, so I had a $2,000 deductible to meet before they’d start covering anything. I paid $200 for a steroid inhaler at the beginning of February, which did nothing for me except make me feel terrible and jittery. When I had an echocardiogram at the beginning of May, I paid $879 out of pocket because I still hadn’t met my deductible yet. This was only the beginning; the other costs just snowballed.

The worst part was that none of the tests were coming back positive, and I wasn’t feeling any better. My X-rays and CT scan were abnormal, and my pulmonary function test showed reduced lung function. My pulmonologist agreed that something was definitely not right, but nobody could tell me what. By the middle of May, he decided he needed to do a bronchoscopy (where they numb your throat and stick a camera down into your lungs, while you’re awake but thankfully sedated), but even that appeared normal. The next step was a course of oral steroids that made me miserable and did nothing to help me feel better. By the end of June, they decided the only option would be a surgical lung biopsy, where they would cut into my side and remove a small piece of my left lung to then study the tissue.

They scheduled the surgery for July 12, and I spent the next couple of weeks in a fog, stressed out about surgery, missing work, and what the doctors would (or wouldn’t) find. The surgeon told me that it was unlikely that a lung biopsy would lead them to some conclusion that was easily curable and that would let me recover completely, and that even if they could determine the problem, it probably wouldn’t have a quick fix.

I got to the hospital at 5:00 in the morning, full of nerves and dread, accompanied by my husband, my mom, and my mother-in-law. The surgery went fine, and none of the terrifying complications I’d been dreading for two-and-a-half weeks happened. I spent two days in the cardiac ICU, because of the chest tube they’d had to insert for drainage, and then was discharged to go home. My mom and my mother-in-law stayed with me, and took turns making sure that I wasn’t ever left alone for the first couple of weeks. My husband had to work, since I was taking the time off without pay for the surgery.

I ended up being out of work for a month, while I healed and went to follow-up appointments and finally got my official diagnosis: a lung disease called non-specific interstitial pneumonia (NSIP). Basically, what that means is that my lungs don’t work as efficiently at exchanging oxygen and carbon dioxide as they’re supposed to (because of inflammation and scarring). My pulmonologist, with whom I was now very well acquainted, referred me to an interstitial lung disease clinic at the university because of the specialized treatment needed.

My first visit to the ILD clinic, at the beginning of August, was three hours long. They went over my file, confirmed the NSIP diagnosis, and told me they’d like to run some more bloodwork to see if they could find the underlying cause (they said it was likely autoimmune, but wanted to try and pinpoint something more specific). They went over the medications they’d be starting me on and the side effects I could expect, as well as other precautions I’d have to take because of potential side effects. I’d have to start taking immunosuppressants, to hopefully keep my immune system from further attacking and damaging my lungs, as well as steroids to try to bring down the already present inflammation before it could turn into irreversible scarring. They also determined, from a brief test during which they monitored my heart rate and oxygen saturation while I walked laps in a hallway, that I’d need to start using oxygen.

In the span of three hours I’d gone from someone with zero prescriptions to someone with several, and who’d need to get blood drawn every two weeks for the first two months, and monthly after that, while they monitored how my body was adjusting and reacting to the medication. I left the appointment feeling overwhelmed and depressed.

I returned to work the following Monday to much the same world I left at the beginning of July, but everything in my life felt different. I had to remember to take pills now, and I couldn’t walk very far without getting extremely winded (even the bathroom in the office where I work is borderline too far for me), and it felt like most people expected that since I was back at work, I should just be all better. I didn’t, and often still don’t, have the energy to explain that it’s not that simple.

It’s been just about three months since my first appointment at the ILD clinic, and it feels like an eternity. All tests to determine the underlying cause have come back inconclusive, which feels like the only thing in my life that hasn’t changed. They’ve adjusted my medications so I take more now than I did after that first day, but at least my meds no longer make me sick to my stomach. They’re just a part of my morning and evening routines. I get sick a lot more often than I used to, since my immune system is weakened, and it takes me a long time to recover when I do get sick. Thankfully, I was able to qualify for FMLA with my employer, so I won’t lose my job because I’m sick — after all, no one else I work with has sick time, so there’s always something going around the office. FMLA is unpaid, though, so it’s not like there’s no penalty for missing work; I definitely feel it when I’ve been out for a few days and my paycheck is significantly smaller.

There are also the medical bills and insurance statements, which, after my surgery in July, came pouring in. At one point, towards the middle of September, I got a bill for more than $55,000 for the two days I was in the hospital. That was actually for my insurance’s portion of the cost, and they did end up paying it in full, but seeing that number on a statement addressed to me was still unnerving. There were countless smaller bills that I was actually responsible for, and for a long time it felt like they would never end. Since I finally, at some point in September, hit my “out of pocket limit” for the year, the tide of bills has slowed, but I’m already thinking towards next year when my deductible resets. I know now that it’s probably worth it to me to pay the higher insurance premiums since I will need specialty medications and oxygen, not to mention who knows how many doctor’s visits, and having all of that go straight towards my deductible will add up quickly.

So I’m learning things, about myself and about insurance, about what it’s like to be the 29-year-old with oxygen, and most of all about what it’s like never to be able to go back.

Amelia Voorhees lives in Arizona and loves makeup, piñon coffee, and Thelma & Louise.

This story is part of The Billfold’s Change Series.

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