Surviving Myself by Don

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!

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Surviving Two DVT & PE Episodes by Victor Zarate

Vic Survivor Speaks Post Graphic

The first one was in July 2011 after a long car ride from Colorado to Florida.  I drove without circulating and developed a DVT in my right calf.  It was sore for about two weeks (I never go to the doctor), I had no clue what was going on. One night soon after, while going to bed, I hurt my back.  What I didn’t know was that what actually happened is that the clot in my leg moved to my lungs.

I waited a couple of days and one day at work I just didn’t feel right.  So, I called my wife and said that I was going to go to urgent care to get myself checked out.  I went there and everything checked out okay.  The doctor said just in case I should go and get an ultrasound done on my calf the next day.  So, I made the appointment for the following day.  At the appointment the technician said that she couldn’t tell me if I had a clot or not and said that she would just go get the doctor if she found one.  It turned out that I had a clot the full length of my calf.  The doctor said that I should go to the ER right away.  I went there and the doctors begin to give me Lovenox and a Heparin drip via IV.

As the ER doc was leaving my room she said, “By any chance do you have any chest or back pain?”  I said come to think of it, I do have some back pain.  She said let’s take a CT scan just in case.  By the way….I’ve come to hate CT scans with contrast with a passion.  Soon after the CT scan a bunch of people, nurses and doctors came into my room with a sense of urgency.  I was diagnosed with multiple bi-lateral pulmonary embolisms.

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I had no clue what that was and just tried to enjoy my time in the hospital since I was going to be there for awhile.  According to the doctors I had a very serious condition and I was a very atypical PE patient since my O2 sats remained at 99 the entire time.  I stayed three days in the hospital and took two weeks off of work.  I went back to normal life, except the Coumadin therapy of course.  In fact I went back to exercising.  I ran in a few 5K races and even in October 2011 went for a 26 mile hike on the AT while still on Coumadin.  I had no clue how serious that could have been if I were to have an accident.  After six months of Coumadin the doctor said I should be fine to get off the Coumadin and then  have some blood drawn to test for blood clotting disorders.  All the results came back negative.  Great news!  No more Coumadin.

The second one was much different.  It happened in January 2014.  I again had a sore calf.  This time it was the left side.  I had been exercising and I just thought that I had a sore calf from straining it.  I noticed that I was a little out of breath going up hills and stairs.  So, I decided that I was going to get in better shape.  I was so out of breath that it was hard just to walk home from work up a relatively small hill.  I went to work one day and I noticed that I was having a hard time breathing.  So much so that I couldn’t even finish a complete sentence without having to take a breath.  I knew something was wrong but I didn’t know what.  So, off to the ER again.  I walked into the ER everything was looking good, O2 saturation was good while resting, heart rate perfect and blood pressure a little high.  The doctor said that I might just be having some anxiety but that since I had DVT/PE history they would do a CT scan.  Long story short I was diagnosed with a very large saddle PE with multiple bi-lateral PE and a DVT that was the whole length of my right leg.  This time I was in trouble big time even though I was feeling well.  I had to be flown flight for life to the hospital.  Upon arrival to the hospital, I was informed that I needed to have open heart surgery immediately.

After being there for a couple of hours the doctors came back to me and said that since I was very stable that they should wait to do the surgery until the morning.  Morning came and so did the doctors.  A lot of them.  They all were coming to see the “walking dead”.  I should’ve died they all said.  So, they scheduled the surgery.  I signed all the paper work.  Called my mom and my children, my wonderful wife was by my side, and said prayers.  Soon the doctors came back and they decided that I was a good candidate for interventional radiology.  They said it would be risky but that I was a good candidate because I was so stable.  Praise God the angiogram worked!  The catheters that they put in my heart and lungs broke up and dissolved the clots and after another CT scan, did I mention I hate those, I was all clear.  The saddle PE was nearly gone along with most of the PEs in my lungs.  I spent 10 days in the hospital.  Several weeks in a bed recovering because I was so exhausted from just a walk to the car.

This one hit me like a ton of bricks.  I had none of these problems with my first DVT/PE.  None!  I experienced exhaustion, anxiety, depression and fear.  I couldn’t even talk about or watch something exciting without getting exhausted and anxious.  I did not expect this.  It changed my life.  To this day I still have problems with all the above mentioned conditions.  Thank God not all of them at once.  I will be on blood thinners for life.  However, I will say that I am getting better.  Just the other day I exercised with my son.  I walked a half a mile, did some jump roping, squats and lunges.  However, I did very few of all those activities and it wiped me out.  I thought I was going to have a heart attack.

I write all this to say that you can experience all different types of complications from DVT/PE.  I will say that you have to keep fighting.  Don’t give up.  That fact that you survive these awful problems means that God has some plans for you still.  Listen to your doctors.  Don’t be ashamed of taking medicine to get through the PTSD.  It is God’s grace that we have these medicines to help us.  I hope my story helps someone out there and that we all can have hope that things do get better over time.  It’s the waiting part that is hard but we have to be patient.  I’m speaking to myself as well.

God bless and I hope you all have quick and easy recoveries.

Thank you, Vic, for sharing your story! You can connect with Vic on Facebook

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Stop the Clot Chicago 5K – Run, walk, donate and make a difference! By Christina Martin

 

Christina Martin Survivor Speaks

About 3 years ago I started my journey as a “real runner”.  I have always liked to run but very short distances. In high school I ran 100 meters and in college I would jog to keep my weight down.  I always watched the larger marathons on TV from Chicago, New York and Boston but thought…yeah, that is not for me.  In October 2013 my best friend Manu and I watched the Chicago Marathon on TV. I cried because I always wanted to do it but thought I couldn’t, it’s 26.2 miles. As I sat there in self-pity and tears, he stared at me with a blank look and walked out the room and said “just do it” for crying out loud.

LOL! That was the trick. I thought why not. If I fail I fail but at least I tried, then I could go back to say “I told you so”.  After many weeks of researching races, shoes, training books, and running gear I signed up for my 1st marathon 2011 Huntington Beach, Surf City on Super Bowl Sunday.

Manu was right by my side ordering movies on TV to get me inspired, buying racing gear and listening to my stories about how many miles I ran, how cold it was to train in Chicago winter, how bad my feet and knees hurt, and all the gritty details. Manu and I made plans to fly into LAX to make it happen. On Feb 6, 2011 I was officially a marathoner at 4 hours and 54 minutes. I remember crossing the finishing line and seeing Manu’s smiling face. I was so so happy. That horrible Charlie-horse since mile 23 was gone, I didn’t feel nauseous and the cuts from my race day shirt on my back didn’t feel so bad…it was officially the happiest day of my life. Manu supported me and made my dreams coming true.

Manu continued to support me through 5 more marathons over the last 4 years. As was preparing for Chicago Marathon Oct 12, 2014 (2) days before his birthday when I was informed by Manu’s best friend that Manu passed away from a blood clot. I knew he had issues in the past but he was 36 years young so I didn’t take it that serious.  His last blood clot was misdiagnosed as a hamstring pull and on September 28, 2014 he passed away at the hospital. My heart was officially broken, as my best friend who I love with all my heart went to be with the Lord.

Manu was buried on October 10, 2014. I ran the marathon in his honor on October 12, 2014, the hardest thing I have done in my life. Running with a broken heart is 10X more difficult that running with stress fractures, sore knees and medical issues. Instead of looking for his beautiful face at the finish line, I looked at the heavens and said “we did it”! October 14, 2014 was his birthday. I went to his grave site with my marathon bib and knew that I wanted to make a difference.

I’m hosting the 1st Annual Stop the Clot Chicago 5K on Mother’s Day May 10, 2015. It’s to honor Manu Ajamu Williams. I’m working with the National Blood Clot Alliance, a charity that supports awareness and research of blood clots.

Come run/walk with us this spring if you live in or around Chicago so we can STOP THE CLOT.

To find out more (including registering for Stop the Clot Chicago 5K), please visit: http://www.stoptheclotchicago.com/

The Invisible DVT Symptoms: My Story by Sam DeBrule

sam debrule

None of the doctors or ultrasound technicians saw my DVT symptoms coming.

I was the only one who felt the pain.

I was a 15 year old football player in peak physical condition. The typical blood clot symptoms just weren’t there. My leg wasn’t swollen. It didn’t turn red, or even feel hot to the touch.

As I went undiagnosed for 6 weeks, my legs took a beating on the football field. The doctors would eventually find what my family had told them was there all along: a chronic deep vein thrombosis that stretched from my ankle to my hip.

My diagnosis came just in time. I’m sharing my story so you never find yourself, or anyone you love, in the same position I found myself. You must advocate for yourself, or risk doctors being blind to your DVT symptoms.

Refuse to take no for an answer

It took 4 trips to the emergency room before I was properly treated for my blood clot.

My clot started with a small muscle pull in my right calf. The pain initially felt no worse than a typical running injury, but quickly morphed into an intense aching pain that I hope to never experience again.

I have a history of blood clots in my family. My father had 2 DVTs and a pulmonary embolism before his 40th birthday. As soon as I told my mother that I was experiencing pain in my calf she took me to a medical imaging office to be scanned for a blood clot. The results appeared negative, and so to did the next 2 ultrasound scans over as many weeks.

Fortunately, my mom refused to take no for an answer. She took me to various hematologists and vascular surgeons, but everyone was thrown off by my unique DVT symptoms. It wasn’t until many weeks later, a 104 degree fever, and a complete inability to walk that doctors took me seriously and discovered the clot.

Had my mother been satisfied with the first or even 4th ‘no’ she heard, I wouldn’t be here today. My clot could just as easily have broken off and traveled to my lungs.

Don’t ignore your pain

Pain was the only DVT symptom I experienced with my first clot.

I was an athletic 15 year old in top physical shape, so doctors quickly shot down the idea that I had a blood clot. I was far from fitting the profile of a sedentary, elderly, post-surgery patient they are used to seeing.

You are the only one who knows your body, and knows how much pain you can tolerate. If any doctor tells you that “you would be in far worse pain if you had a blood clot,” leave the office immediately and find a doctor who takes his/her patients seriously.

Stupidly, I continued to play football with each mis-diagnosis from doctors. I tried to fight through the pain. I am incredibly lucky that my story didn’t end tragically. Don’t be too tough for your own good, or try to find excuses to not make that trip a doctor’s office.

Find the experts

I have permanent vascular damage in my right leg that causes me pain and discomfort every single day.

Had my DVT symptoms been addressed more quickly, I would be pain free. If you begin experiencing DVT symptoms, you will likely be fixated on your pain, or finding treatment as quickly as possible.

Be sure to ask around to make certain the doctor you visit has a better track record than anyone in the area at properly diagnosing and treating blood clots. You’ll save yourself from a life of discomfort.

Editor’s Notes:
Thank you, Sam, for sharing your story with Blood Clot Recovery Network.
Catch up with Sam on Twitter @SamDeBrule. Sam has created a workout program to help others who are looking to get in shape for the first time or maybe get back in shape after a debilitating illness or injury. Sam’s fitness plan is free, completely customizable, you don’t need any equipment or gym memberships and for me, it’s just the step I needed to take with the start of 2015 to take control of my health! All you need to sign up is an email address so check it out today or click below. 
Click here to sign up for Sam's workouts.

Click here to sign up for Sam’s workouts.


A Survivor Speaks: A Remarkable Recovery

I wished to share my PE experience which is now 3 months out. Back in May, I just came back from a successful but exhausting trip in Calgary to my Montreal home. I decided to extend the long weekend by taking Friday off when I woke up with a strange and out of place feeling in my right breast. It felt like a little inner poke or a little lump. It did not feel cardiac, more muscular, but still out of place. I found it strange as I only did cardio workouts for the last few days and did no lift any weights or performed push-ups. Since it was on my rights side, there was no immediate panic and I simply tried to rub it out over and over again. I even called one of my staff and joked about this sudden chest discomfort brushing it off as nothing.

I went downstairs, my wife was on the twins case about homework and getting their project done – being a traveling father and now dealing with this lump, I really did not want to get into it and kept rubbing by chest as the discomfort grew. At this point it was not painful but did not feel natural. We all have aches and pains and in most cases they go away – or so I was hoping.

The uneasiness grew, I did not want to scare my wife and kids and discreetly started to look up heart attack symptoms on my iPad, took 2 baby aspirins -and even some Tums. Even though it was on my right side, it was in my chest area. I had no typical symptoms except for this persistent lump that I kept rubbing. So I figured I had to “walk it off” and went to do errands with my head slightly getting overloaded with anxiety.

I came home and kept holding my chest. It was not really painful, just out of place. I figured I might as well get it checked out as it was not going away. Somehow this hit my little boy and he began to cry and fear for his Dad. I decided to drive myself to the Lakeshore General hospital in the West Island of Montreal.

Now Lakeshore is not the biggest hospital in Montreal and does not have the reputation carried by the Montreal General, Royal Vic or the Montreal Jewish hospital. It’s close by and convenient. I figured and “hoped” that if I did have a cardiac event, they would know what to do and, if need be, stabilize me and ship me out. But a hospital is a hospital and I just lauded spending possibly hours in ER triage and waiting room. I mean I looked really healthy otherwise so who knew what the wait would be, I packed up my iPod , iPad, chargers and portable Wi-Fi. I was set for the next several hours.

As I left home, my wife said, “Tell them you have chest pains and high cholesterol.”  Okay, I guess, anything to get through this faster so I can back home.

“Yes sir,” said the ER nurse. “Hum, I have high cholesterol and chest pains,” I replied

She barraged me with the typical questions and asked me the pain level from 1 to 10. Something I did not expect, at this point there was no DVT pain or anything except for this lump.

“About 3, but if I move this way or breathe hard it can go up to a 6 maybe,” I replied and went to sit down because I was getting light-headed with stress and hunger.

The wait was not that long after all; I guess being middle aged and complaining about chest pains gets some attention. The same questions kept coming back: “Why are you here? Where does it hurt? Do you feel nauseous?” And the dreaded, “What’s your pain level from 1 to 10?”

They gave me an EKG that was rather funky but not definitive. Blood work, several hours apart, was in order to see if the ticker got damaged and the gurney took me from triage to the bowels of the ER. A young Doctor who comes from the same country as my parents and with the seriousness of seeing one too many hypochondriacs asked me again to quantify the level of pain I had, if I had shortness of breath etc… Frankly at this point, I thought I was wasting everyone’s time including my own.

“Look,” I said, ” I’m in solid shape” which I am. “I was in Calgary where I did 3 solid cardio workouts in 3 days, doing 50 minutes on the elliptical followed by climbing 20 flights of stairs – no issues, no pain all good. My last night in Calgary was brutal as the fire alarm went off at 1:30 a.m.,  and I had an early morning meeting before coming back East that day. I was wiped by the time I got home. It’s probably just muscular, plus fatigue etc.”

The young Doctor kept saying, “We will just make sure.”  And for the next few hours, he kept checking up on me, asking if the pain was the same, and it was. The answers never deviated, but I wondered if I just needed to pack it up believing, that I was taking someone else’s bed that needed real attention. He kept coming back and then asked in a Dr House manner, “You said you travel, right?”

“Huh huh” I replied. “Let me check just one more thing.” He then proceeded to have me do a chest x-ray and CT Scan. All I could think was “Wow,this is Canada, not bad.” I was not keen on having this liquid in my veins, for the CT scan, but I’m here, let’s get everything checked. I did not think much about it. The young Doc came back at 11:00 p.m. to interrupt my Candy Crush game. “I’m glad I did the test,” he said, “You have blood clots in your right lung.”

I was to be kept overnight, monitored and told I would have to to take anti-coagulants and blood thinners. In the morning, I would see a hematologist. I asked if I could be out of the hospital by 1:00 p.m. as the puck was dropping at that time for the hockey playoffs. I had priorities obviously.

I was nevertheless stunned. I knew it was serious, but realized only when I started doing internet searches on the severity of the matter. The young doctor’s gut feeling to do this scan probably saved my life and/or avoided further internal trauma and damage to my lungs or worse. Spending a night in the ER is quite something, but the staff made me feel comfortable, even fetching me a sandwich when I was starving late in the evening.

I was quite happy to go home. Say what you want about the Canadian Medicare system, but it works. I had no papers, insurance or others to sign and all that it cost me was $13.50 for parking. I now continue to see a no-nonsense hematologist at the hospital and am proceeding strongly. I have recovered well, and after reading the challenges of so many, I feel fortunate. I was back doing long walks and working out. I did suffer a setback due to a severe summer cold causing extreme fatigue, but finally recovered from that and am back full swing. I continue to take Coumadin and am stable with little bleeding incidents. I will likely do so for a long time, if not life.

My PE was “unprovoked” and since treatments work and don’t affect my day to day life and sport activities, the Hematologist believes I should stay on. Overall, the hospital was great and accessible but I again attribute my recovery to this young ER doctor and his common sense gut feeling. While serious in his duties, I remember seeing him smile when I said, ” You know that Milan Lucic, the hockey player from Boston and nemesis of anything Montreal, he is one of us.”

Since I left, I joined Blood Clot Recovery Network on Facebook or BCRN. Sara, the founder, has been my rock, helping me understand what was happening to me, to my body, and what was I going through in the healing process. For this I’m grateful to Sara and her commitment. My awareness regarding thrombosis is at a heightened level, and I feel lucky to be able to share my story and while fortunate appreciate the struggles that so many who are afflicted by a blood disorder go through.

*Editor’s Note:  Thank you, Yves, for sharing your story with BCRN! Connect with Yves in the comments below or in the BCRN Facebook Discussion Group.

 

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