Surviving Myself by Don


Hello, my name is Don.  I am writing you to share my story and to express my sincere appreciation for your efforts with public awareness of clotting disorders.  I am a Paramedic employed with a Non-Profit medevac helicopter organization. We transport high acuity patients on a regular basis.  These patients range on a very broad spectrum, from multi-system trauma to acute medical emergencies including stroke, heart attack, and pulmonary embolism.  Education and clinical experience has informed me of specific manifestations to assess for, when differentiating acute pulmonary embolism (APE) as the causative culprit.  A classic text book description of pulmonary embolism is “atypical” chest pain, among many other descriptors.  Atypical meaning APE manifests in  a way inconsistent from other chest pain causing conditions, hindering diagnosis and impacting prognosis.  In my career I have cared for and treated many patients impacted by acute pulmonary embolism.

Prior to my grandmother’s passing, some early childhood memories of mine are visiting her during her many hospitalizations for deep vein thrombosis.  Her unfortunate “condition” was passed along to her children, specifically my mother and aunts. All have been plagued with numerous DVT hospitalizations, varicose veins, coumadin life changes, and lovenox shots.  Factor V Leiden has been confirmed as the genetic clotting disorder that has been passed down from generation to generation.

I am a relatively healthy 35 year old male that lives an active life with a beautiful wife and two young amazing children.  I’ve committed my career to helping others in their most worst times of need.  I volunteer a large portion of my free time to our local volunteer fire department and ambulance, serving as the Fire Chief and also a volunteer paramedic.

don and wife

Just about a week ago, I developed pain and discomfort in my right bicep.  The medical side of me dismissed the very “different” pain and discomfort to that of a typical pulled muscle, and life went on.  A few days ago, while tapping maple trees with my brother-in-law, one of our snowmobiles became stuck resulting in strenuous lifting.  The following day I began experiencing “atypical” chest pain.  Yet again, the medical side of me dismissed the chest discomfort and pleuritic pain as that of just another pulled muscle.  After all, what else could it be?  Following a few sleepless nights racked with severe stabbing pain radiating to my right shoulder, I relented and sought evaluation at my local emergency room.

Personally knowing the majority of the staff on hand, including the physicians and mid-level practitioners, still didn’t preclude my assessment to that of a strained muscle, despite my colleagues thinking differently.  During evaluation and initial work up, labs were drawn, and my D- Dimer was found to be elevated.  During my contrast CT scan, I was still convinced that I was experiencing a strained muscle, that is until the results came back.  Multiple acute pulmonary embolism with pleural effusion.  Ultrasound confirmed a large DVT in my right bicep.  Not until that point did my years of training, assessments, and experience finally clear up my personal tunnel vision.  It was all too clear.  Family history of Factor V Leiden, family history of DVT, pain in right bicep, strenuous physical activity and exertion, atypical chest pain and shortness of breath EQUALS pulmonary embolism.

How did I miss this?  The answer is evident among the medical community as a whole.  One out of every three pulmonary embolism patients presenting to the ER are misdiagnosed, according to a recent retrospective observational  study.  Education and awareness to the community, healthcare workers, and first responders is paramount.  This disease is quickly overlooked, and can be so very debilitating or even fatal.  So again, I express my appreciation for your commitment to public awareness and education, which unquestionably will save many lives.  God willing, I will continue my passion and save many more future lives.  If I could ever be of any assistance, please don’t hesitate to ask.

Thank you, Don, for sharing your story with the BCRN community. Be sure to connect with Don in the comments below!

lost in clouds button

A Survivor Speaks: You’re Stronger than You Think You Are by Sidney Penner

The day I suffered from my P.E (November 15,2012) was a day I never thought I’d get through. The night before my P.E, I was walking from my college class to my car when I realized I was getting short of breath. That was not normal for me at the time because I was exercising every day and always out running and walking.  The next day I woke up and had terrible side pain. I thought maybe I had pulled something while exercising. As the day went on, the pain progressed more severely.

By the time my mom got home I was in my bed and couldn’t sit and couldn’t lay flat and then I remember a huge rush of pain. I went to the living room in tears, and that’s when my mom told me to get my coat on because we’re going to the E.R. I had never been to the E.R and had never even been to the doctor that much since I was always a healthy girl. After tons of blood work and a chest x-ray, the doctor came back into the room and said they saw something but wanted a better look. They took me in for a CAT scan and then came running back into my room saying, “this girl has an Acute Pulmonary Embolism in her lungs and we need to admit her now!” I remember the doctor telling my mom that if I hadn’t of came in that night, I wouldn’t have been alive. That was very scary to hear when I was only 20 years old. I was scared, because even daily tasks I wasn’t capable of doing. My mom had to help feed me, had to help me with showering, and had to help me get dressed. The pain was so bad I couldn’t do anything for myself.

If I could tell anyone about what happened I would say: I was a healthy and active 20 year old girl who never smoked, never drank, never had sex, had never been on birth control, never had injuries, never took long trips and never had family history of such an illness. This is something that can happen to skinny or big people; old or young people. I feel like there needs to be a lot more awareness for such an illness; it is the 3rd leading cause of death in America.

The one image I can clearly capture from my experience, it was when they sent me to get admitted and they were hooking up IVs and EKG’s and oxygen to me. I remember all the doctors and nurses working and then I remember my mom sitting by me; and I remember yelling at the nurses that I would rather die, just kill me. Then one nurse, who tried to make light of the situation, said “Oh sweetie we have a whole other level for patients who are thinking that way!” He was super funny and made me feel a little better.

Looking back, I think my main emotion was fear that I was going to die. I remembered always waking up to the intercoms of the hospital saying “code blue” and I was thought “Oh my God, is that me? Am I alive? Am I breathing?” It was a scary moment for both me and my family.

The biggest challenge I have overcome with since my P.E. is the fear of doctors, hospitals and needles. I was terrified of all three before my P.E. Every time I’d get sick I’d wait it out. I wouldn’t dare step near a doctor’s office. But since my P.E, everything has changed. I realized that the doctors and nurses are there to help me and keep me calm during such a difficult time. I overcame that fear and this experience has made me fall in love with the healthcare field. Now, I am trying to get into nursing school and become a nurse. I’m not scared of needles anymore, and I’m definitely not scared of doctors.  I was very lucky to be blessed with such an awesome medical team, my doctor and nurses who have helped me so much during this scary time.  I will forever be blessed this has happened to me, and I wouldn’t want it any other way. Because of this I now have my dream career and I’m stronger than ever.

Reading other survivors stories make me feel like I’m not alone with such a scary illness. It also makes me wonder why so many people have this life threatening illness and still no awareness is made. 

I would say to another survivor, to NEVER give up. It looks like a long road right now, but you will get better and back to normal! I was on blood thinners for five months. I was getting my INR checked all the time, and I was always tired and weak. But now, I’m off the blood thinners, I’m getting active again and I’m feeling more like me as time goes by. It’s not impossible and if I was able to make it through, then we all can! Awareness is key.

Connect with Sidney in the comments below or through theese links:
  • Facebook 
  • Twitter
  • Pinterest (PEsurvivor20) 

Thank you, Sidney, for sharing your story and message of hope with BCRN!

A Survivor Speaks: Surviving a Silent Killer….The Whole Story by Lisa

Lisa Cover

A Survivor Speaks: Surviving a Silent Killer….The Whole Story by Lisa Cowan Wells

I always thought of myself as a Mom, Wife, Friend who wore many capes…I was always on the go, shuffling oldest to high school and job.  Then taking both kids everywhere with me while doing errands for myself, house, school, our brewery and night school for me at the end of the day.  I always lived in fast mode…you would think under those circumstances I could be at least a spokesperson for being able to take on anything!

At the end of last year, 2012, I noticed I started having more health issues than my usual, occasional bronchitis, sinusitis, and asthma episodes.  These continued into this New Year, 2013.  I went to the ER countless times so sick and all they did was say it’s your asthma…here is some prednisone, Z-Pak and pain pills for chest pain.  D-dimer was always coming up negative, so they never pushed further to check for clots since my leg was not giving any signs or signals for a DVT and chest just seem to be asthma related issues.  I noticed that every time they were giving me those meds, the usual ones that always worked when it was bronchitis, asthma related issues weren’t working anymore and the pain in my chest, dizziness, palpitations were getting worse…at this point when I would show up at the ER…I just had to be in search of pain meds, I must be addicted.  The last ER visit I had before the BIG ER visit…he sent me home with the same meds again and said I had pleurisy.  They did a D-dimer each time and again, always negative…this ER visit they even did a CT scan without contrast and said there was nothing.  I began to think I was crazy or something…got really scared.

I was in my kitchen this past April and my daughter gave me something to cut open…instead of using the scissors, I used a small, very sharp knife…dumb, dumb, dumb BUT so glad I did because it was from that cut that got the ball rolling on finding this DVT, multiple bilateral pulmonary embolisms I had.  The knife went in deep on the side of my finger…told some friends on Facebook about and they urged me to go to the ER just to be on the safe side to make sure it didn’t get infected…, embarrassingly I did.  When I got there they took my BP and it was 179/145…they were freaking out and the thumb became last priority…my pulse was racing at 137.  They walked me back and did and EKG, D-dimer and some tests while they cleaned and bandaged my finger.  They I was informed to get a doctor right away about this blood pressure issue because it was serious.

The next day I did.  Blood pressure still was high, not feeling well in my chest.  He thought go ahead with another round of steroids and be rechecked on the blood pressure after two weeks.  I went in again, this time with tingling sensations (described like a hyperventilation feeling) on my left side from neck, chest, arm, leg and foot. He seemed puzzled. I went home, a few days later could not get off the couch, had a raging headache and still had the same symptoms but this time it was worse and could barely move.  I called the doctor and he suggested I go the ER. The ER checked all those things again.  Asked me if I would like to just go home and see what tomorrow brings or be observed overnight.  I chose to be observed overnight because I knew something was not right.  They kept saying I was just having muscle spasms causing the pain on my left side and was going to release me the next day.  A new doctor came to see me before they made final decision to let me go…we talked, she seemed very concerned and ordered a CT with contrast to check for clots even though the d-dimer was still negative.  Low and behold…nurses started rushing in, hooking me up to things just as I was about to tell my mom I was going home.  I put the phone down and asked him what was going on…he said you have clots in your lungs….WHAT! Me?  Not me…Super Mom.  What is going on…I was so confused and this was so foreign to me.  All kinds of emotions flooded through my brain…I cried, was terrified, confused…everything.

The next day the nurse asked if I would like to take a shower…I said yes.  When I was in there I got this Charley horse sensation and pull in my left leg.  It was very odd.  I debated whether or not to say anything.  Good thing I did.  She ordered a scan of my leg and there it was…a monster of a clot…18 inches!!!!!  There was the culprit that caused the embolisms.

Next day, I had labs…..and about 20 vials of blood were drawn.  All came back negative.

I finally went to a hematologist that did testing that was done and found what it was….I had the MTHFR C677T and the Prothrombin G20210A mutations (heterozygous and homozygous).  What all this means to me right now is that I am a lifer on blood thinners (Warfarin).  I see a genetic counselor on September 5th so this will help me understand…I do know I have to get my daughters tested for sure.

Well there you have the whole story.  I am still Super Mom but in a different and more special way now.  I see the world and my own life differently after coming so close to death.  Thank you all who were by my side from the beginning…my husband, children, family, friend and the friends I have made here that gave me my voice back to make a difference and spread awareness.  Here I am and here is where I want to be!

To connect with Lisa:

Or, you can comment below.

Click Here to Share

A Survivor Speaks: It took almost 13 months to feel fine by Caitlynn

Caitlynn Cover.jpg

A Survivor Speaks: It took almost 13 months to feel fine by Caitlynn Stamey

If I am being honest, fine is the only word I can use to describe how I feel. A year and two months ago, I was hospitalized for bilateral pulmonary emboli. I’m talking about 13 blood clots in my upper chest. If I had gone to the hospital any later than I did, the doctors said I would have had a heart attack, or even better, a stroke. Can you imagine that? A 20 year-old suffering from a stroke? A stroke that would have been self-inflicted. You see, I didn’t happen upon blood clots, I was my own enemy in this story. Or at least, birth control was, and I was the one who doubled & tripled up on doses when I missed a few days. All of my friends did it, so why was I any different? Because, little to my knowing, I have Factor V Leiden. This is a blood clotting disorder that is triggered to kill you via estrogen. Go figure.

My story is just like everyone else’s, I had the worst pain you could ever imagine and I ignored it for three days. I waited until the pain was so unbearable that I went to an ER. It took four doctors, three x-rays, eight hours, two CT’s, several blood tests, and at least two urine tests to determine what was going on. I like to think the doctors didn’t want to believe they were about to tell a lively, life-loving 20 year old that life as she knew it was over. You are not invincible, no alcohol if at all possible, long plane rides could be your demise, and having babies is pretty much out the window seeing as you also have PCOS.

Staring my mortality in the face was probably the hardest part of this whole thing. You see, all my friends still think that they are infinite. I do not. When I brought up my PE’s most of my friends laughed it off like it was nothing. I guess I don’t blame them. Who wants to think about the possibility of dying at 20 years young? Nobody does. But the elephant in the room that everyone ignored was what I was, and still am living with. To this day I stay up all night thinking about everything that happened last year. I feel better physically, but mentally and emotionally I am drained. I find myself looking up blogs on PE’s or reading about them (like I don’t already know everything there is to know about them having survived one).

Don’t get me wrong, I am SO THANKFUL to be alive. I guess that I never understood how someone could question their existence when they’ve lived through something that should have killed them. I understand now. I am slowly recovering; I do things that the doctors told me I might not be able to. I try to live my life to the fullest because I know how quickly it can slip away. I chase my dreams like no tomorrow and I try to be the same happy go lucky girl I was pre-PE.

I think that post PE Caitlynn is pretty bad-ass, though.

Connect with Caitlynn in the comments below!

Click Here to Share


A Survivor Speaks: P.E. Isn’t Just for Physical Education by Trysh

Survivor Speaks Trysh

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!


Click Here to Share