A Survivor Speaks: P.E. Isn’t Just for Physical Education by Trysh Thompson
Walking to my car winded me. This was abnormal.
Emptying the dishwasher winded me. This was really abnormal.
But, being the granddaughter of a hypochondriac (hmm, I wonder, did she have Munchausen’s?), I blew it off. On the flip side, I’m also the daughter of a man who had everything wrong with him. He brought all that upon himself with poor choices though, so still, I blew it off. Besides, whatever it was would be fine the following day.
The following day I spent most of it in bed. When I finally emerged from the bedroom, I took the twenty step walk to the living room and couldn’t breathe. That’s when I knew this was bigger than an allergic reaction or a panic attack and I had to go to the hospital.
My husband stayed home with our daughter and put her to bed, I took off, cell phone in hand and said I’d text from the ER. I honestly expected to be home in a couple of hours.
I walked into the ER and the lady behind the glass walls (really, is that necessary?) asked me how she could help me.
“I can’t breathe,” I panted. “That walk from the car about damn near killed me.”
I repeatedly tell my daughter the world does not revolve around her. Let me tell you, when you tell someone in the ER you can’t breathe, the world actually does revolve around you. Into a room I go, and within five minutes, I’m hooked up to an EKG, they have ordered the IV, and the admissions lady brought the paperwork to me.
The monitor above my bed showed a BP of 181/110. I looked at the nurse and said, “That can’t be mine. That was the person before me, right? Cause I’d be dead.” She shook her head, “No honey, that’s you.” That’s about the point I got scared.
The doctor comes in to talk to me, he’s pretty nice. He’s telling me he’s going to get an IV started and order a whole bunch of tests. Okay, whatever, dude, cause I’m really in no position to contradict you.
I don’t understand the line of questioning. I get asked about chest pain. No, I didn’t have that. I hear them mumble that this isn’t normal. WHAT THE HELL ARE YOU TALKING ABOUT?
Well, three hours, a blown vein, an IV, four vials of blood, a d-dimer score of 4110 (it’s negative if it’s under 400), a chest x-ray, a chest CT scan, and another doctor later, I have a diagnosis.
Bilateral pulmonary embolism.
I watched enough House, M.D., I knew what a pulmonary embolism was. Quite frankly, I’m smart enough to know what the bilateral part meant, but, well, I blanked and went, “I get the pulmonary embolism, but what’s bilateral?”
The nurse and doctor, in complete unison, “Both lungs.” Ohhh. The doctor continued, “And the one on the left is freakin’ huge.” Freakin’ huge, is that a medical term?
After the doctor leaves (he’s the second one, the one who ordered the tests didn’t stick around long enough to find out the results), the nurse goes, “I was suspecting PE the whole time. But most people who come in with them are a lot less healthy than you.” Uh, thanks, I think.
I looked at her, “So, with this, I don’t get to go home tonight, do I?”
She laughed, “No, you’re not. And most likely not tomorrow either.”
Well, crap. There went my weekend.
During all of this I was texting my friends, my husband, keeping them up-to-date. My battery was practically dead at this point, but I managed to eek out one more text – to my mother, who was on vacation. “Hey, Mom, I don’t want to freak you out or anything, but I’m in the hospital. I have blood clots in both my lungs. But I’ll be okay.”
I’m taken to my room, and I get some of the worst sleep I’ve ever had. Let’s face it, if you slept well in a hospital, you were sedated. There was a woman down the hall screaming (she was, incidentally, sedated the following night), there were the vital checks every four hours, the 6 a.m. visit from the vampire who took six vials of blood … yeah, hardly restful.
I honestly felt fine, at least laying in bed. I didn’t understand all of it.
My husband comes up the next day with my cell phone charger (thank God!), some pajamas (another thank God!), and the kiddo. The kid took one look at me on the oxygen and flipped out. Great. It’s not like I had a choice, but she would not get anywhere near me. It actually really upset me.
My mom called to tell me they were changing their plane reservations and coming home early. I told her that wasn’t necessary, but let’s be honest, you can’t tell your mom anything. Especially my mom.
I did some googling about PEs. Thirty percent don’t live long enough to hear their diagnosis. WHAT? And I walked around like this for damn near two days? Wow. I also remembered a friend of mine’s mom died of a PE when she was in her early 40s. Oddly enough, I wasn’t freaked out. My stepdad accused me of not completely understanding the severity of what happened to me. I assured him that yes, yes I did.
But what good did it do me to wallow in it, I mean, it was what it was, I couldn’t change the fact it happened. (Side note, the survivor’s guilt came a few months later.)
The doctors told me they were going to test me for something called Factor V Leiden, a blood clotting disorder. If I was positive for it, I’d be on blood thinners for the rest of my life. Nice. But they usually test for it when someone as young as I was (31 at the time) comes in with a DVT or a PE. Okay, well, it’s another blood draw. Have fun.
I left the hospital after two days and a steady stream of visitors. Hell, you almost die and everyone wants to come see you! I actually initiated the leaving the hospital, I made them do my vitals without the oxygen. Since they were stable, the PA told me I could go home, so long as I was willing to give myself blood thinner injections until the Coumadin leveled out. Hey, I was cool with that, because this meant my daughter wasn’t afraid to come near me anymore! And I could do nothing at the hospital, or nothing at home. I’ll take home for $2000, thanks Alex.
I wasn’t allowed to go back to work until my INR leveled out, which took two weeks. I spent those two weeks online, looking up PEs, PE recovery, Factor V Leiden, DVTs, everything.
I read almost everything there was on Factor V Leiden. My mom was flipping about it, and she was praying it came back negative, she didn’t want me on blood thinners forever. (At the time, I was like, “eh,” now, having been on them for what feels like forever, free me!) But I wanted it to come back positive. Not so much that I wanted a blood disorder, but because I wanted answers as to WHY this happened to me. Plus, looking at the list of symptoms, I saw everything from which my dad suffered. Hmmm.
Ten days (and a phone call to the hospital and the doctor’s office) later, I found out that I was, in fact, Factor V Leiden positive.
In the years leading up to my father’s death, there had been some bad blood between us. Now I had proof that he had, in fact, given me bad blood. Thanks Ralph.
Luckily I am only heterozygous, so only one parent gave it to me. This also means that once I finish this course of blood thinners, I don’t have to be on them forever – at least not until I have another one, which research shows will most likely happen. Oh goody, something to look forward to.
But, it also means the deck was stacked against me. Factor V Leiden makes an individual 5-7 times (not percent, times) more likely to develop a blood clot. Fantastic. Smoking increases those chances, but thank God for small favors, I’m not a smoker. What also increases those chances? Birth control – a whopping 35 times more likely. Was I on birth control? Yes. Did I stop it after the PE? Yes.
What scared the hell out of me more is the thought I passed this to my daughter. Alas, we won’t find out for a long time. They don’t test asymptomatic children. Ugh.
So, there it was. Bad genetics combined with my desire not to have any more kids that led to my downfall. Who knew?
Worse yet, being Factor V Leiden positive, I should have been on blood thinners the whole time I was pregnant. Being that I didn’t know at the time, I wasn’t. So I looked up the things that can go wrong – it’s not pretty. Amazingly, I had no complications with her. Knowing what I know now, that is nothing shy of a miracle.
My life was completely upside down after that. I mean, I couldn’t eat salad because of the Coumadin and the fact my INR numbers were all over the place, I still couldn’t breathe, I had to wear a MedicAlert – something I never expected to have to do, and I had to go in for weekly INR checks – which were a pain in the ass. Anyone on Coumadin will tell you that.
A week after the hospital discharge, I was walking around the grocery store, and once I got the far end, the chest pain hit me. I clutched my chest and leaned against my cart, waiting for it to pass. It takes a lot to accept that your body just isn’t ready to do the things it used to do. Things that seemed like nothing before take everything out of you. For months on end, a Saturday morning worth of errands led to a Saturday afternoon laying on the couch, because I was simply exhausted.
Six months later we learned the “freakin’ huge” clot didn’t dissolve completely, and since the Coumadin wasn’t therapeutic a large part of the time and therefore pretty much worthless, new blood clots were forming and attaching to the clot. Result: I had to change blood thinners. Moreoever, I’m sort of freaked out that I walked around with that clot in my lung for months on end. How is that possible???
Since then, I’ve had a tubal, so I don’t have to deal with hormone-containing birth control anymore. Like I’m going to give the Factor V Leiden a leg-up again. Not on your life. Most importantly, not on my life.
Every ache and pain in my chest freaks me out, for fear it’s happening again. You’d think that being on blood thinners would alleviate that fear, but it doesn’t – after all, look how well Coumadin worked for me. I can’t even begin to imagine how much I’ll flip out once I’m off the drugs.
Dammit PEs suck.
Come to think of it, so did PE class in school.
PEs just aren’t good all the way around.
Connect with Trysh through her blog or the comments below!