When You Don’t Know You’re Not OK

It was a profound moment, wrapped in vulnerability and the ordinary occurrence of dinner together as a family. I was weak, still in pain, only recently discharged from the hospital and unable to make my husband’s birthday memorable with a special touch or gesture like I might otherwise do. Because of the upside down week, we couldn’t do our usual—birthday person chooses a place to eat out for our family celebration—and we had to go simple: delivered Chinese takeout. 

Years ago, I spent time around a friend’s family table and experienced the beauty of each family member sharing their own heartfelt thoughts about one special person on their birthday or at a particular milestone. One after another, they spoke words of thanks, admiration, and took great care to notice and acknowledge aloud the attributes of the named person in personal and specific ways. The first time they included me in this ritual as the designated recipient of spoken praise, punctuated with a “You are Special Today” plate in front of me, I bawled my eyes out. I wasn’t prepared for how those meaningful sentiments would reach my soul, and I decided then, I wanted praise and thanks to always dance around my table. There is something powerful about words that punch through to the heart.

With still-labored breathing, I pushed food around my plate with a fork, feeling partly guilty for the attention that had been on me all week. I wanted to lead the kids in a round of lovely words for Daddy on his birthday in lieu of being able to show him love in the form of a wrapped gift or something. 

I said out loud, “Let’s all take a turn saying one thing we’re thankful for on Daddy’s birthday. I’ll go first. I’m so glad Daddy was born.”

He didn’t wait two seconds before blurting out, “I’m so glad Mommy is alive.”

It was silent after he said it, and as words do, his honest ones punched through to my heart, breaking the protective shell around it. Tears poured out from there.

It hadn’t occurred to me prior to that moment how near I might have been to death in the days before. I still don’t really know. Some google-searching on the topic of my diagnosis did turn back stuff like, “may result in permanent injury or death if not addressed immediately,” so I guess all the drama surrounding my hospitalization and the reactions of close friends and family were warranted. Still, it wasn’t until that moment I realized what a big deal it all was, and months later, I’m still processing the event. 

I woke up one Saturday morning with an odd pain in the middle-right side of my back. It felt like a misaligned rib or some kind of muscular tweak in that area. I literally thought nothing of it. As many times as I have been pregnant, I’m sort of used to little aches and pains. I’m also accustomed to dismissing small things that seem like they’ll resolve themselves in a few days’ time. For good or for bad, discomfort has become a way of life. I wouldn’t say I’ve ever felt miserable, and none of my ailments have been “bad enough” to hold my attention for long, so you could say, I’ve practiced overcoming by powering through. 

I continued about my weekend, as usual, just taking some time to stretch, take deep breaths, and see if I could shake loose whatever was causing the pinch.

Within a day or two, it was a little bit more uncomfortable. What started out as only rib-pain escalated into additional pain up in my shoulder area. Neither pain was constant, but it was at times significant, especially when I tried to take in a full deep breath. It seemed like a muscular/skeletal sort of thing, and because the two pain spots were on the same side, it seemed like they could be related. 

I decided I’d maybe see a chiropractor or a massage therapist.

Aside from my tremendous midwife, I didn’t have many established care providers for myself. I sought out a few recommendations from friends and tried to find a time to fit in a personal appointment in the midst of our busy week. We had classes on Tuesday and Thursday, Bible Study on Wednesday, Homeschool Co-op on Friday. The first time I could get in (and also have care for my jumbo crew) was Friday afternoon at 1pm. I chose to go with a recommended massage therapist because honestly, a massage sounded like heaven, and I thought it really could make a difference and ease the kind of pain I thought I was experiencing. 

Sometime that week, I gave up trying to sleep in my bed. When I was upright and moving, I didn’t feel as much pain but when I tried laying down to sleep, the pain increased significantly. I tried propping pillows to create an incline in my bed, but it didn’t help too much. Fully upright was the only comfortable position. Eventually, I moved upstairs to the living room couch, where I could be firmly propped on 3 sides thanks to the corner piece of the couch and the pillow pile I’d collected. For several nights, I slept completely upright, failing to recognize that the pain was subtly escalating day by day. Like a frog slowly boiled, I didn’t know when to jump.

Friday arrived, and with it,  the massage appointment I’d made. I walked in with high hopes, and simultaneously felt a pang of selfishness as I handed over the check for the service fee, like I really should suck it up and deal with the pain in a less indulgent way. A massage generally falls in the “luxury” category in my mind, and I had a hard time feeling like I belonged there in that office, while my husband’s workday was interrupted by caring for our kids. 

By that time, I was about 10 weeks pregnant, and the massage therapist wanted me on my side, rather than my stomach. I complied and explained the symptoms that had compelled me to seek out care. She spent an hour gently working through the muscle groups and doing some gentle stretching exercises, which I tried so hard to enjoy, but it really wasn’t enjoyable. I had so much hoped it would have provided some relief, but I walked out feeling about the same—a little disappointed that I wasn’t magically fixed. 

By the next morning, the seventh day after my first sign of discomfort, the pain became about ten times as bad. Would it surprise you to know that at the time, I still did not feel like it was serious? I couldn’t do all my normal tasks, and it hurt to reach, pick up dishes in the sink, and I still wasn’t sleeping in my bed, but I had somehow convinced myself I was ok. With my husband home from work for the weekend, I chilled out on Saturday, hanging close to my spot on the couch, doing minimal tasks around the house. My plan was to wait until Monday and call a chiropractor since the massage didn’t work. Don’t ask me where the logic was, but that’s what I decided.

On Sunday, we stayed home from church because I had not slept well all week, and it seemed like too big an effort to rally the kids. My husband had a co-worker and his wife coming over in the afternoon to watch the Seahawks game, and we had some fun food planned as was our usual Sunday custom. I wasn’t feeling great but I didn’t want to be a party-pooper, so we kept the plans. 

Mid-morning, I coughed some mucous up from my chest, and a (gross) chunk came up. I wasn’t about to swallow it again, so I rushed to the bathroom and spit it in the sink. It was small, dense, and very bright red. Startled, I took a closer look, picked it up with a tissue and tried to make sense of it. I gargled with water to see if there was more blood around but ultimately dismissed the red for the moment, because: boiling frog syndrome. I did decide I should skip the chiro call and that I would call our family doc on Monday to be seen. It did not occur to me for even half a second that I should go to the ER. 

With guests over, I tried to be a hostess, but I spent much of the game huddled in my couch corner, in and out of sleep, trying not to take too deep a breath to trigger the stabbing pain in both my shoulder and my back. At one point, when the guys were out of the room and it was just the young wife and myself, I apologized for not being very talkative, that I had been dealing with some unexplained pain. That was about all I could manage in conversation, and I hobbled through the rest of the day and night, doing as little as possible, moving a little as possible. 

The next morning, a friend came over to stay with my kids, and I went in for an 11am appointment. I hadn’t actually seen our family doc as a patient, but he was very familiar with our family, having seen all six of our kids for the past 2 years for their various well-child and occasional illness visits. He knows about my conservatism when it comes to medical care—that I don’t like doing anything unnecessary. 

He asked, looked, listened, and noted in my chart. Then he said, “Well…you’re not going to like this, but I need you to drive straight to the ER without going home. You have enough symptoms that could point to something extremely serious, and you’ll need the diagnostic resources of the ER docs to rule in and rule out what might be going on.”

He called ahead and sent me on my way. I made my own calls and followed his orders, even though I did still think this was all a little dramatic. 

When I arrived at the hospital and found parking, I went in through the ER doors, signed an intake form and was called back by an ER triage nurse, all within about 2 minutes. For all the waiting I’ve done in doctors’ offices over the years, it was as speedy as one could imagine. 

An older Russian nurse did a quick screen of my heart function and sent me next door to a triage nurse who asked me for all the details about my visit. He was warm and kind and assured me the medical team would do everything they could to help me.

Sounds of machines beeping, feet shuffling, murmured whispers and whimpers from various rooms down the brightly lit hallway hit my senses all at once. I felt extremely out of place—by far the youngest patient around by at least 30 years. I changed into a gown and was shown to a room at the far end of the hall where I waited for some time. The nurse checked in with me, drew some blood, took my other vitals, and explained a few first steps. My phone battery was already low, so I minimized my use of it, not really knowing what to expect out of the day. 

The kids were being cared for, my husband was at work, and the whole thing seemed like a chill, weird hangout in the ER, waiting for some answers. 

I didn’t feel panicked, or even really worried. I don’t really know why, except that maybe it was a supernatural peace. Or maybe it was me just diminishing my physical needs to the point of denial like I’ve become so accustomed to over the years. Perhaps it was both. 

The back of the hospital bed I was tipped to as upright a position as it would go, as I still couldn’t recline at all without the pain. Even at that, I sat to one side of the bed, one leg on the floor so I could sit fully upright. There were electrodes on about 8 places throughout my chest, and in the first two hours, I went for a chest x-ray and had a vascular ultrasound of my legs, looking for blood clots. 

My first conversation with the ER doc was sobering. She explained that my chest x-ray came back abnormal…that it provided them with enough information to know they needed to do more tests, but not enough information to determine what the exact issue was. It could be a tumor, a blood clot, or a number of other things I can’t remember. Tumor, I thought. Dang, this doesn’t sound good at all.

Because I was 10 weeks pregnant, there were some limitations about what and how they could do further tests. She said I would need a CT scan, which they typically don’t do for pregnant women unless it was medically necessary, which she said for me, was absolutely the case. She said, “This could be very, very serious. This imaging is really not optional. There is some risk to the baby, but it is a risk we have to take in order to better understand what is going on and to decide on next steps.”

She asked me to sign a piece of paper acknowledging the risks and assured me they would do everything possible to protect the baby during the scan, but there were no guarantees. 

By this point, I’d been there about 5 hours, visited by half a dozen different people for more blood, more vitals, more questions, and more waiting. Weirdly, I still didn’t feel worried. I mean, I wanted to wrap up this whole gig and get home, but I wasn’t fretting. I knew my husband would be along shortly, having checked in after the abnormal chest x-ray, and pretty soon, the whole picture would be clearer for both of us. I was hungry, having done an on-the-go breakfast, and no lunch before arriving at the ER. A nurse brought me a few saltine crackers out of compassion. 

A short while later, a tall, male nurse arrived to transport me upstairs for the CT scan. I had to center myself in the bed and he swung the rails up for the ride. He wheeled me out of the bright fluorescent lights of the wing I’d been in all day, through some extra-wide doors to a dimly lit hallway with two oversized elevators. As we waited for the elevator to ding, I felt the first pang of acute and gripping loneliness. I wished I wasn’t there alone.  

We went up a few floors and down a hallway, to a room with ominous machinery and 3 technicians waiting with some instructions for me. 

They mixed up a cup of barium—a thick chalky substance they wanted me to drink in order to provide an internal barrier between the baby and the radiation of the scan. Choking it down was something of an experience in itself, and one I hope I don’t have to repeat. 

The tech explained how the scan would work, what the injected dye would feel like, how I would need to be really still during the imaging. 

I would also have to lay flat on my back for the duration of the scan with several layers of thick-apron things draped over my middle to protect the baby.

I tried explaining that I needed the ‘flat on your back’ part be to as brief as humanly possible because of the pain that came on when I did so. They nodded and dismissed my plea (it seemed), and prepared me for the test. I dutifully followed all the directions like the A+ student I am, but the instant I laid back, the pain was stabbing and truly unbearable. I was struggling to breathe at all, and it felt like it was taking them forever to line things up or get things going or whatever they were trying to do.

“Relax,” she said. “Take a breath and hold it,” but I couldn’t even get a breath and I started to cry. I don’t know how long it took in actuality, but by the end, panic had overtaken me, and I emerged from the machine a little hysterical and gasping for breath as they allowed me to sit up again. I had to compose myself for a few minutes before I could even walk back to the hospital bed I had arrived on. 

The CT scan was the lowest point of the day. It was the moment I realized I was truly not ok. 

Returning to my original room, I waited for the doc and instead saw my husband come through the door. I was relieved to have a familiar face, a warm hand holding mine, and someone there when the ER doc came back to give us the results.

“You’re very, very sick, and we are admitting you to the hospital to be treated for a pulmonary embolism (a blood clot in the lung),” she said. “You might be here a while, and you should make arrangements for your kids.”

I accepted her words, knowing for the first time that yes, I needed care, and no, I couldn’t just power through. 

She shared more details, as did another pulmonary specialist, about what was going on in my lung and what I could expect for the following days. 

My official diagnosis included pulmonary embolism in the rear lobe of my right lung. The clot itself caused a pulmonary infarction—blood loss to an area of the lung that resulted in diminished function/tissue death (and potentially long-term function loss in that localized area)—and most of my pain was being caused by pleural effusion—a significant build-up of fluid in the lining of the lung, which had been exacerbated by the compromised lung tissue. 

The pain in my shoulder was actually sympathetic pain, as the fluid put pressure on my diaphragm, just under my lung. There was no actual problem with my shoulder, just a connection in the nerves between it and the diaphragm (which I found crazy interesting, given how “real” the pain was in that area). 

My husband had worry all over his face, and I was unable to do a thing about it.

(Click here for more of this story…)

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1451. poppin pals play with toddler, 1452. cookies all done without too much drama, 1453. team effort in the kitchen, 1454. daddy feeling kicks for the first time, 1455. sisters playing beauty shop, 1456. a few minutes of Walking on Water, 1457. feeling good, 1458. a place to put my feet up, 1459. finding words, 1460. the prayers of a friend

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April 13, 2013
When Goodbyes Come
April 14, 2013
When Things Become Clear
May 28, 2013
3 Comments
  • Reply
    Valerie
    December 23, 2018 at 7:07 am

    I didn’t know you went through this. I sure hope everything is ok for you now. I’m ready for that next post to see how this played out. 🙏🏻❤️

  • Reply
    Lynne H
    December 23, 2018 at 11:42 am

    Oh my goodness. Joining your husband in giving thanks.

  • Reply
    Sandi Sutton
    December 23, 2018 at 11:16 pm

    Oh Emily! Just reading this replay of what you went through has my heart beating faster. I’m so glad that you were finally persuaded to go to the doctor. I share your mindset of medical conservatism—which ironically, once landed me in the hospital for three days and close to death as well—so I well know those reservations about seeking help. But I’m so grateful you did and like your husband, so glad you’re alive. ❤️

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