“What are you worried is wrong?” The ER dr’s voice was full of compassion and concern. I stared at him for a split-second and before I could think through my answer, before I could edit my emotions, I told him, “I’m scared there’s something really wrong with my heart” and then in a smaller voice inside my head, “and that I might die”
It was a simple exchange, but he seemed to hear my unspoken fears. This was bigger than chest pain from indigestion on Thanksgiving day. This was more than an over reacting hypochondriac going to the ER. This was a woman scared of leaving her children and husband too soon, scared she couldn’t tell the difference between panic and disease, but most of all, scared her body was failing her.
Happy Thanksgiving, me.
I was discharged quickly because despite my fear, nothing (new) was wrong. I went back to my in laws house to “finish” thanksgiving and tried to just laugh at my panic. But, I wasn’t really laughing, I was barely hanging on. The anxiety and fear that I experienced those first few weeks postpartum were crippling.
It all started one week postpartum when I had unexpected heavy bleeding. Because of the bleeding, I was in and out of my OB’s office for about a week getting ultrasounds and trying different medicines to help my uterus contract. Luckily, it didn’t look like retained placenta and the main goal was to get a grip on the bleeding.
I wasn’t super worried. This was not my first rodeo. This was, in fact, my fourth baby and my fourth c-section and therefore, my fourth rodeo! I was blasé about the whole affair. Yeah, yeah, another “section” no biggie.
However, during this week of monitoring the bleeding, I mentioned to my husband that I was having heart palpitations and chest pain. I laughed it off saying “I’m either having a heart attack or it’s anxiety… and we both know it’s not a heart attack” My husband chuckled, but said that I should probably mention it to the OB nurse.
I mentioned it to her the next day and she said it’s probably from anemia and had me come in for blood work. My hemoglobin was the highest it had ever been… so I wasn’t anemic.
I had to call my nurse again the next day to update her on the bleeding and I mentioned my chest pain again because it was getting worse. I casually mentioned I was now having shortness of breath too, but simultaneously dismissed it by saying it was probably just anxiety. She encouraged me to call my primary care physician. I told my husband what she said and he asked to see my phone.
My husband immediately called my PCP (primary care physician) and handed me the phone as it rang saying “make an appointment.” He knows I hate going to the dr and I tend to feel like I’m bothering doctors unless I’m dying… so it was smart of him to dial and hand over the phone as it rang. I told the receptionist “it’s probably nothing, probably anxiety…” but the receptionist talked to my PCP and he said he wanted to see me that afternoon.
I felt better just knowing I would see my PCP and he could rule out anything scary. I imagined that he would reassure me I’m fine, just exhausted from having my fourth baby in under 6 years. He ordered blood tests to rule out various conditions, but felt that it probably was anxiety as I had suggested several times during the visit.
When he ordered the blood draw he warned me that one of the tests might come back with a false positive because of my postpartum hormones. I understood and told him my ‘worry brain’ appreciated him doing the bloodwork anyway to give me peace of mind. Within two hours of getting the blood drawn my Dr called me and said my D-dimer was high, but it’s also the test he had mentioned that might come back with a false positive. He said he still wanted me to get a CT scan of my chest to be certain all ok and sent me to the ER.
The ER dr agreed that doing a CT scan because of my blood result was a good idea, but reassured me that hormones can elevate the blood result and that my stats were stable so he wasn’t too worried. I was embarrassed that my complaints had brought us this far and I was starting to feel guilty for having my newborn at an ER full of germs.
After a while the Dr came in and looked serious. He sat down and said, “the CT scan showed that you have a pulmonary embolism (blood clot) in your right lung. We need to admit you right away and start treatment”
Tears started streaming down my face before I could stop them. My husband reassured me everything would be ok. I wasn’t so sure. I still had so many hormones coursing through my body at barely two weeks postpartum and I didn’t know much about PE’s. I only knew they were scary and I knew you could die from them.
I thought of my oldest, Grace, only in kindergarten, and still my little shadow. I imagined Henry being silly and jumping on the sofa. I could hear Sophia, my little cavewoman toddler, starting every sentence with “me….me want milk, me tired, me love you,” and then I looked down at my newborn, whom I was holding against my chest amidst the tangle of monitor wires, and his little round belly was moving up and down with each breath. I smelled his little newborn head and I prayed, “please don’t let me die, not yet.”
If that sounds dramatic, it’s because it was. I felt the giant weight of all the reasons I had to live crushing me and it felt incredibly dramatic.
After my silent plea to God to let me live I went into organization and planning mode. I told the Dr I needed to go to Riverside because that’s where my OB has hospital privileges and, because of my uterine bleeding, I wanted her input on how to handle the complication of taking blood thinners to treat the pulmonary embolism while having the potential to hemorrhage. I told Patrick to take Bobby and go home and pack a bag for the hospital, tell my mom she’ll have to watch the kids overnight and then meet me at the hospital with Bobby.
The ER set up transport and got me to riverside via ambulance. They insisted ambulance was the safest way to transport me, and the insistence of which did little to help my anxiety. But oddly, the most relaxing and comforting 40 minutes of my experience that weekend was the ambulance ride. It was dark outside and they had the lights off inside the ambulance, it was lightly raining, the heat was on….it was very quiet and calm and I was able to rest. It was a slight reprieve from the intensity of being in the ER and worrying about the implications of a pulmonary embolism.
Despite my thirst for knowledge, and although I do love a good “google search,” I refused to google “pulmonary embolism” while I was in the hospital (or ambulance) for fear of what I might find. In fact, it took several weeks before I could even google “pulmonary embolism recovery.” I thought it was better to get any information on a need to know basis from nurses and doctors. I thought, too, that unlike google, doctors and nurses could gauge my anxiety level and help me grasp what I needed to know without terrifying me.
I was wrong about that last part. The first Dr I encountered was worse than google. This guy scared the living daylights out of me. I had mentioned to him my concern about going on blood thinners because of my excessive bleeding that past week. (I only mentioned this because I was scared of bleeding out and dying…) His comforting response was “look, I’m gonna be honest, -insert condescending chuckle-, my job is to save your life. And right now, I need to deal with the blood clot in your lung, so that’s what I’m going to do. I don’t really care about your uterine bleeding. If you need blood transfusions we can cross that bridge when we get there, but right now my number one job is to keep you alive.”
Cool, cool. Not sure if you realized this, but I’m already petrified I’m not gonna see my kids again, so I’m gonna go ahead and ask you to reign in that macho life saving talk and comfort me with some better words. Words that don’t indicate you need to save my life immediately and blood transfusions are the least of my concerns.
Thankfully, he was the only doctor who spoke to me like that. However, most nurses and doctors talked to me like I had extensive knowledge of my circulatory system, blood clots and PE’s. I don’t. At one point I had to tell a doctor “I have a vague idea of what’s going on… but not really. Actually, I don’t think I understand what’s happening.” This gem of a doctor went into a lengthy, detailed explanation. I remember feeling so grateful at the time. Unfortunately, it was around 2am and I had been up for nearly 24 hours and I retained only a quarter of what he said, maybe.
But, I did learn that I was going to be receiving the blood thinner heparin via an IV while at the hospital and that I would be at the hospital a few days. I learned that I would need to take blood thinners for three months and that the blood thinners I received in the hospital weren’t going to get rid of the blood clot before I left the hospital like I originally thought. (Wait, what? You mean you’re gonna discharge me with that thing still there????) I learned that my situation wasn’t as dire as some people with a PE. I learned that there are “provoked” PE’s and “unprovoked” PE’s and they believe mine was provoked by pregnancy and c-section, and that’s a good thing because unprovoked PE’s mean they’re more likely to happen again.
I was only at the hospital for a total of three days, which it turns out is relatively short for a pulmonary embolism. I did have to get blood drawn every two to three hours resulting in several bruises and a new aversion to needles. Lucky for me, I could face that new aversion head on as I had to give myself injections twice a day for the next three months.
On my last day in the hospital they taught me how to give myself the injections and discharged me. No words of warning about the PTSD I would experience, no suggestions to seek extra mental health support and certainly no indication that it’s typical to feel certain that any new symptom is a sign of impending doom. And not like “haha I’m such a worrier” but like “Patrick, should we call 9-1-1? I think I’m having a heart attack”
Which, brings us to my ER visit on Thanksgiving day. It was only 4 days after being discharged from the hospital for the PE, because three days after being discharged our family drove to Virginia to be with all the family for Thanksgiving. I really wanted life to continue on as normal, to pretend that weekend didn’t exist and with the Dr’s green light, we were on the road!
But two bites into my turkey on Thanksgiving day I genuinely thought I was having a heart attack. So, my saint of a husband took me to the ER where I was reassured that my heart was doing great.
And about six weeks later I felt ready to start writing and doing some more in depth processing.
The mental and emotional recovery is no joke. It is absolutely more difficult for me than the physical recovery.
I’m incredibly grateful for my primary care physician’s thoroughness that led to the diagnosis. And I so appreciate that he hasn’t committed me to an insane asylum even though I call the office on an almost weekly basis. Like, is he SURE that twinge I felt in my leg isn’t another blood clot that’s going to break off and kill me?
I can sort of make jokes now, nearly 2 months post PE diagnosis*. But it’s still hard. I’m still dealing with PTSD symptoms. I’m struggling to find unbruised areas on my stomach to inject the medicine into, and while I hate giving myself shots, I’m also terrified of going off the blood thinners.
But, mostly, I’m incredibly grateful to be alive. I’m not running around Pollyanna style mentioning all the good I see. There are hard days, hard moments and life isn’t always perfect. But, I do have a new appreciation for the imperfections, the hard days, the difficult moments and I am so, so grateful to be here.
*I wrote this mid January with plans to do some follow up posts about PTSD, newborn life, panic attacks… but…. it took me so long to edit this. I’m now almost 5 months out from the PE diagnosis and finally feeling comfortable talking about it, in fact, I would say it’s part of my healing process. *
One thought on “Untitled”
Katie, Thank you for sharing this journey of yours with a wider audience. You have a talent for communicating – you add just the right amount of humor, never in a condescending or trivialized manner, but with such honesty that we feel how the humor is your way of coping. The message of your journey through this period of physical and emotional trauma should be read by every medical student. Would you consider sharing it with them? Perhaps your docs could help. Take care of yourself, dear Katie. You are a treasure to many. So glad to be a part of your life. ❤️ Donita
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