Everyone that has had a pulmonary embolism has a different story, because everyone has different circumstances. Some have hereditary factors that contributed to their clots, some – like me – have environmental factors. Everyone has a different journey, and this is mine.
November 12, 2014 – 7:00 PM
I have a weakened immune system and, since I work from home, don’t have a lot of exposure to the bugs that office dwellers come into contact with. I had been fighting a cold (stuffy head, cough) for the better part of a week. I noticed earlier that week that I couldn’t breathe as deeply as normal, but figured the cold moved into my chest/lungs and left it at that.
I remember that, while watching Jeopardy, I started feeling pain in my chest.
Since I was doing a lot of coughing and changed off of my Fibromyalgia medications, I figured that either A. I pulled something or B. it was phantom Fibro pain (nevermind that mine typically roves my back). Took a couple painkillers and left it at that. Had a lot of trouble sleeping that night, which included some advanced acrobatics with my pillow to get reasonably comfortable.
November 13, 2014
The pain in my chest lasted all day and only increased in strength as the day went on. I took more painkillers and slapped a heat patch on it. If I knew how bad things were, I would have taken myself to the hospital.
Andy could tell that this pain was different when he got home from work (he texted to see if I wanted anything for dinner and I replied with “a bullet.”).
We ate dinner and loaded into the car. I thought he was overreacting. I thought I just pulled a muscle from coughing. I never would have imagined that it was a blood clot.
By the time we got to the hospital, triaged, worked up, and talked to the doctor (it’s now about 9:00 PM – because these things take time) I felt like I was being stabbed in the ribs with a broom handle.
After my X-rays and bloodwork, the doctor came back and said he wanted to run more tests and that there was a chance that I had a blood clot. I was still being stabbed with the broom handle, but I still didn’t think this was a blood clot.
I got to take a second gurney ride, this time to get a CT scan. The contrast dye they inject is… interesting. Makes you feel like you peed yourself. Not exactly pleasant. I was in CT for longer than I planned – my IV was in a goofy spot and I had trouble holding my arm out of the way.
Back to the ER bay, and by now I’m getting impatient (patience has never been one of my strong points – remember the chicken?). It’s closing in on midnight by the time the CT results are back and the doctor returns with the verdict…
I had a small blood clot in my right lung (weird, no pain over there), and a larger blood clot in my left causing a wedge-shaped infarction (there’s a five dollar word if I ever heard one) in my left.
Cue panic attack.
Now this panic attack – it was impressive. Never felt anything like it. Remember the broom handle? It was still there, but now, imagine that plus feeling like your ribs are being both smashed to bits and being ripped out, plus not being able to breathe (you’re having a panic attack with blood clots in your lungs, it’s not exactly easy to breathe as it is), and throw in panicking because you can’t breathe – and that’s roughly what it felt like.
I was admitted to the hospital overnight for observation. Last time that happened I was a toddler (and I don’t remember it). In case you weren’t here the first time I posted this pic…
I was finally released Friday afternoon. I’m still not 100% thrilled with how I was treated in the hospital (I had questions about my medications that literally took 3 hours to be answered), but I was released to manage my own treatment.
I still don’t know what caused the clots. Ultrasounds were done on my legs to see if they started out there (deep vein thrombosis) but the results were negative. I think it’s because I had a bad combination of causes – primarily, I was on birth control pills and carried too much weight. Plus I’m over 30 (which still shocks me). I sprained my knee the month before, maybe I wrapped the bandage too tight. Could have been the physical therapy I was in – maybe something dislodged. Or I could have been too sedentary (I work from home, I don’t have to walk around a lot). Or it could have been all the traveling I’ve done lately. It could have been anything. I didn’t realize that I was playing Russian Roulette until I (almost) lost.
So what’s happened since then? I won’t lie and say that things have been easy. Things have sucked real bad.
After being discharged, it took another week for my medication situation to get worked out (I still think the hospital was in cahoots with the drug manufacturer – they wanted to force me to be on one medication vs. going to a different one that my mother’s boss – a doctor – recommended after knowing me for 15 years), which included a week of giving myself injections twice a day and getting blood tests every other day. I couldn’t feel my fingertips and my belly was a ring of bruises from the injections (including one in the car in the parking lot of the Stevie Wonder show), but I was alive.
I modified my habits, changed my birth control (that’s a whole ‘nother story and I’m trying to be patient so I can see if the positives outweigh the negatives here), and I’m trying to work on the weight issues (want to help keep me on track? Shoot me a message and we can connect on FitBit). I’ll be on blood thinners through mid-May (or maybe it’s mid-April. I can’t really remember.). There’s a few pictures over on Instagram of my adventures in bruising. Unfortunately I can’t do anything about being over 30.
I got some new jewelry out of the deal, too.
But, I’m still breathing, and that’s a lot. If you’re new here, you probably missed this one, too…
I’ve found a new community online of other survivors. Having this PE was a wake up call for me, and I’m not joking when I say November 13, 2014 was the day that everything changed. The person I was on November 12th isn’t here anymore. My priorities have completely changed. I’ve become more accepting of who I am, and I’m not trying to hide who that is anymore. And I hope that if I speak up about things that affect me, it can help the larger community and everyone else. Because a PE can happen to anyone (Chris Bosh just had one for pity’s sake), and they really, really suck. Really. They’re not nearly as much fun as they sound.
I’ve been having more good days than bad since November, but it hasn’t been a bed of roses. I don’t like having to rely on people, and I’m forced to some days. I tire more easily. My memory is finally coming back (I was in a fog from November through Christmas – which made the company summit in Vegas interesting) and I still have pain in my chest. It’s not the broom handle now, more like a strong poke every now and then.
This is always something that I’ll have to deal with in some form. And I’m ok with that. I’m still figuring out who I am now, and I’m still trying to find my happiness. I like to think that I’m more open to ideas now, and I know I’m more open to sharing my experience (which is a complete 180 in itself). It was a wake up call for me, and I hope it is for you too.
Happy Blood Clot Awareness Month, everyone. Please feel free to reach out to me here via the comments or my contact page. If you had my cell phone number once upon a time, it hasn’t changed – so give me a call.
– e
Erin – I had no idea about this. I’m so sorry to hear about such a frightening time for you and Andy. Thank you for your post on FB and your blog – I’ve read every word. My mom had a PE years ago after several days of lying in a hospital bed – it was scary, but we were in the right place, fortunately. Here’s to much more progress for you. Take care. – Shelley Murray (a buddy of Muriel and Oded)
Hey Shelley, looking through comments I’ve received from this post, I’m amazed at how often clots have hit within my circle. We’ve had a lot of health issues in our family but nothing like this. I realized that night (maybe because I was high on painkillers) that I was given a second chance and I fully intend on using it! Please say hi to Tom for me 🙂
Hello Erin! Thank you so much for sharing this story with me – and more importantly with so many people who many not even know what a blood clot is. As you know, #AwarenessMatters. I am grateful to connect with other Survivors like you because together, I believe we can make a difference! I can relate to your story and I am glad we are both here to talk about. Keep up the great work writing and raising awareness. I can’t wait to see where this journey takes us! Take care.
Thanks for stopping by, Sara! This experience sucked but if I can do something to raise awareness about PEs, I will 🙂 It has also drawn me closer to family & friends, and I’m grateful for that.
So sorry to hear Erin! My mom passed away 31 years ago this year Easter from an embolism that came from her thigh and hit her in the lungs.(autopsy report) She hadn’t felt good for months prior, had all kinds of tests for heart. Passed out the night before Easter, after we were all at the house eating the Blessed basket. She was tired so we all went home..got a call as we walked into our house that she was in hospital,and rushed there via ambulance. They thought she might have the flu but planned tests for Monday after Easter to check for clots. Needless to say, she didn’t make the tests, died walking to the bathroom from her bed in the hospital. She was 52. I am now 56 and have worried if genetic, etc. She never smoked. And not on the pill ever.. But did have a hysterectomy when she was going thru menopause, late forties. Thanks again for sharing your story. I hope they have better testing now than they did 31 yrs ago.
Hey Joyce, so sorry to hear about your mom. I understand the fear about it being genetic – former coworker’s wife has the illness that causes clots (if I think of the name I’ll be sure to update… It’s something “V”). I was lucky that even though it felt like forever to me, my ER doc understood what was wrong pretty much as soon as I said broomhandle – just needed tests to verify. Hope you’re well, say hi to the family for me!
Thank you for this article–I just got out of the hospital for this same thing! Bilateral pulmonary embolism–a bunch of them! I took a ton of tests, and was diagnosed with Lupus anticoagulant! Not the same as Lupus, but commonly associated with it. Maybe you want to see if you have it also? I had to take more in depth tests because they didn’t have an answer for me either!! But knowing if you test positive for that may help you in your future decisions down the road–best wishes during this recovery time!
Your story really hit home. I was hospitalized 3/9/16-3/13/16…for DVT and bilateral PE’s. I was misdiagnosed in the ER at LGH (reading from your text screenshots you seem to be from around here) as having acute musculoskeletal back pain 11 days prior on 2/27/16. That was the worst pain id ever felt in my entire life. So sharp it took my breath away and i could barely move when it would hit which was often. My heart constantly racing. Looking back now…i know it was the PE’s causing that pain && thats the scariest thing to think about. It wasnt until 3/9 that a doctor didnt try to just prescribe me medicine and send me on my way…he sent me to the ER for a possible clot & thats what it was. A DVT in my right leg from my knee to my groin && bilateral PE’s…one PE being larger in my left lung. Im on bloodthinners also and constantly trying to be conscious of not falling or cutting myself or anything. You’re right that its the day everything changed…because it has. I’ve had to start therapy due to the emotional toll it has taken on me as im also suffering from GI symptoms that are causing me to lose weight. But this experience makes me that much more thankful for my life. Never will I take it life for granted because there was a chance that I could not be here today.
Erin,
Thank you so much for sharing your story. I found out in March that I had bilateral pulmonary embolisms after feeling that pain you describe so well and coughing up blood for almost two weeks. You were much smarter than I for getting help as soon as you did. Two weeks later I was back in the same hospital after “failing Xarelto” – which means I had more clots and one was rather large. My first bout caused an infarction that then caused a pulmonary effusion to develop. I stayed in the hospital for ten days with a chest tube draining out over 2 liters of fluid.
I had just turned 32, have never smoked, was on my feet quite a bit at work, and was on oral birth control. I had a hematologist look at my blood where it was determined I had genetic and acquired clotting irregularities so I am on blood thinners for life.
I had a fairly monumental panic attack when I got home after the first diagnosis. People DIE from this – why am I here? So I try to be more conscious of how I answer that every day.
Thank you for sharing your story. I stumbled upon your story on Pinterest. My 30 year old cousin died last year suddenly from what they have deemed as PE. I had no idea what it was before her death. I’m trying to learn more about it and more importantly, what the symptoms are, so that I can know what to be aware of if it were to happen to me.
Thanks again for sharing your story and adding humor to your scary situation. I hope you are feeling better now!
Hey Jess! My sympathies about your cousin. It’s unfortunate that so few know about PEs. I’m just over two years out and doing much better, thanks 🙂 I have good days and bad days, there are days my clot sites still hurt, and days I get winded climbing stairs, but every day more progress is made. Please feel free to reach out if you have any questions or want to chat!