Venous Thromboembolism

Venous thromboembolism (VTE) includes deep vein thrombosis (DVT) and pulmonary embolism (PE).  A DVT is a thrombi or a clot lodged in the deep vessels of the legs and/or pelvis, or in the vessel of an arm.  A PE develops when a clot dislodges and moves into the vessel that supplies blood to the lungs, or into the lungs. 

Blood Clots (VTEs) can form in a vein(s), or artery(s) of the body.  A blood clot can create a blockage in a vessel, causing blood flow restriction before and after the clot, resulting in blood pooling, less blood and oxygen to an extremity (or lungs and other organs) and then a reduction of blood flow to major organs. Disruption in blood flow can cause pain, sensation changes in an extremity in the case of a DVT, and shortness of breath and chest pain in a PE and an overall general sense that something isn’t right. It can also lead to the loss of a limb, or organ and death if left untreated.

Two people I love and adore were diagnosed with blood clots

Two people I love and adore were diagnosed with VTE’s or blood clots.  Neither of them presented with textbook symptoms.  Both are young, physically fit and active, and in excellent health.  Both sought medical intervention and both were turned away, with, a ‘nothing is wrong with you’ diagnosis.

Yet, both had progressive blood clots that worsened because they did not show up with ‘textbook’ signs and symptoms!

These two important people, and examples of real life, non textbook VTE’s, are my 41-year-old amazing husband, Patrick and my 45-year-old dear friend, Courtney.

No One is a Textbook

The reason I write this blog, is that in our experience, there is not enough information about blood clots except for textbook signs and symptoms. The truth is, no one is a textbook. We are all unique and different human beings. Please read this, you might need this important information for you, or someone you love.

Deep Vein Thrombosis TEXTBOOK

A deep vein thrombosis or DVT occurs when a clot forms in a vein of the body.  This clot compromises the return of blood to the heart and lungs and can cause a pooling, or back-flow of blood, or a restriction of blood flow, which leads to a limb swelling, a change in skin color and temperature, and pain. 

My Textbook Experience with DVT

In my experience as an ICU and Emergency Department Registered Nurse, I mostly saw people arrive as textbook examples (see below) of DVTs. People came into the healthcare system concerned about leg pain, with swelling, redness and a change in temperature in their affected extremity, compared to their other extremity.  Usually the person had an extended amount of time without much activity or movement like, bed rest, extreme illness, or traveling on a long flight.

DVT Textbook Symptoms

DVT textbook symptoms include;

• Swelling

• Redness and warmth at the site

• One-sided extremity pain

• Loss or faint palpable pulses

• Coolness to skin of affected extremity distal to clot

But what happens when you have a blood clot and do not present like a textbook example? 

Patrick

Patrick is my rock. He is entirely supportive of me and the work I do, he is my sounding board, my deepest love and my dearest friend. He is hilarious and will tell it to you straight. He is brilliant, knowledgeable, loves to have fun and is dedicated to continued learning. My Yubbs is fiercely loyal, loves his family and will do absolutely anything to help another person, he is very generous and kind. He rarely complains of anything.

Patrick broke his 5th metatarsal (the long bone of his pinkie toe) while doing some fast agility footwork during his daily workout.  No surgery was recommended. Treatment plan: wear a boot, and after some healing, go to physical therapy, heal more, and then onward and back to life. Seemed simple enough.

He Remained Active

Patrick was (and is) diligent about his health.  He remained active, working out 5-6 times a week. I was impressed as I watched him ride the bike, weight train and accommodate exercise all while wearing his boot.  He was a trooper.  He had ‘normal’ post-break foot and ankle swelling and pain, which we attributed to his bone break. 

His Foot and Ankle Swelling Remained and So Did the Pain

His foot and ankle swelling remained and so did the pain, even after a few weeks. We returned to see the orthopedic surgeon who specialized in athletic injuries- per protocol. Patrick expressed concern that his ankle and foot swelling and pain were not improving despite time’s passing.  This specialized surgeon did not appear worried at all and so, we didn’t worry either. But Patrick’s pain continued, and so did his foot and ankle swelling.  Time passed.

Patrick continued to tell me his leg hurt. He didn’t want to take pain medicine, so he iced, elevated and rested it often.  I told you my husband is a trooper right? So much a trooper, that the day he broke his foot, we attended a work party, where he stood with crutches and conversed the whole night, until finally he told me, “I’m in pain, we should go”. 

I Should have Seen the Signs

About three weeks went by.  Patrick spoke about his leg and foot swelling and pain often every day.  As a Registered Nurse, I should have seen the signs.  I didn’t, although I looked for them, -those textbook ones- sometimes more than a few times a day. 

He asked me often, “can you look at my leg again? Do you see anything?” “Is it different than the other?” In my assessment, he had ankle and foot swelling and discomfort, but he had broken his foot, so that seemed normal- but why was this stuff going on so long? There was no redness, no loss or weakness of pulses, no coolness to touch.  The surgeon said it was normal. He was working out, going to work, grocery shopping, walking, was living his normal life- except for the continued pain and swelling. He is so young.

But why was it going on so long?

on Christmas Day

On Christmas Day (more than three weeks after his break), Patrick could not stand for more than a few minutes without sitting down- he was in such pain. I said, “Enough of this!  We are going to an urgent care to see what is going on.”

I didn’t care that it was Christmas day, and our family was over and we had cooked ham and set the table. We had to get to the bottom of this -now horrible pain. Patrick explained it felt like his leg was going to explode.

I found an open urgent care with an ultrasound, I had a sinking gut feeling that it was a DVT- but I stayed hopeful that it was just his broken foot with swelling.

The doctor assessed him.  No calf swelling, no calf pain, no redness, able to walk, no pain with flexion or extension.  Recent foot fracture.  He was ready to discharge Patrick.  “NO!”  I told the doctor, “my husband is in pain, he never complains about anything and I have a feeling he has a DVT- yes, I know he doesn’t present like one, but PLEASE- do an ultrasound to rule it out”.   He agreed and they called the ultrasound tech in from her Christmas family dinner.  ☹

The Ultrasound Seemed to Take Forever

The ultrasound seemed to take forever and I silently prayed for my dear, amazingly strong and thoughtful best friend, “Dear God, please take care of my Yubbs, please, no clot.  Please no clot, please no clot.”   We waited on edge for the ultrasound results and tried to remain hopeful. 

While we waited we researched what we would do if it were a clot, we wanted to be ready. Heparin drip? hospitalization? Coumadin? Eloquis? There wasn’t much to describe what Patrick was feeling.

We are Brave

One of the things I love most about our relationship, is that we talk about everything. We are brave with each other and we share the good, the bad, the everything, even if we are scared. I was scared for him. I was trying to be brave, be an advocate, nurse, friend, but I was scared, and I knew he was too.

“You have TWO DVTs”

The physician returned with a somber and pale face.  He said, “I’m so sorry Patrick, but you have TWO DVTs.  One in your femoral vein and one in your popliteal vein.”  And then he said to me, “I’m so glad you demanded that ultrasound. You were right.”

But, I didn’t want to be right. Holy Shit.

Pulmonary Embolism (PE) TEXTBOOK

A pulmonary embolism is a blockage in the pulmonary artery, causing a reduction of oxygen and blood flow to the lungs. It is life threatening.

My Textbook Experience with PE

In my experience as an ICU and Emergency Department Registered Nurse, people arrived as textbook examples of PE’s. They show up with shortness of breath, with sharp chest pain, increased heart and respiratory rates, low oxygen saturation, high or low blood pressure. Usually they have been on a flight or a long trip, or were already really ill.

Pulmonary Embolism (PE) Textbook Symptoms

PE textbook symptoms include;

• Shortness of breath

• Fast heart rate

• Chest pain

• Cough

• Dizziness

• Rapid respiratory rate

Courtney

Courtney is my dear friend. She is also a fitness instructor who teaches a high intensity program called BODYATTACK- she kicks butt and is a fierce advocate for healthy minds, bodies and spirits. Every time we are together, I can count on her to make me laugh, see the positive and feel her love for her family, and everyone around her.

Courtney randomly began feeling fatigue, a slight heaviness in her chest and a light, tickling cough.  She went to her doctor, advocating for her health, but they did not find anything, so she went back to her vivacious life.

She taught her fitness classes, feeling troubled by her inability to catch her breath and with less energy than the usual crazy energy she is known for. She didn’t have chest pain, and second guessed herself because the doctor said there was ‘nothing wrong’. 

She Went to her doctor again…

She went to her doctor again, re-explaining her symptoms of energy loss, tickling cough and chest heaviness. Again, she was told, ‘nothing is wrong’, she went on, knowing something was off, because these feelings were very unusual for her.

Courtney’s symptoms progressed and she went to her doctor two more times (FOUR doctor visits now) explaining something was not right. The doctor told her she was ‘just anxious’, because even an EKG came back ‘normal’, and her vital signs were all ‘normal’.

Four weeks after she had her first uneasy symptoms, and four doctor visits later, Courtney’s chest heaviness increased and moved into her right side, becoming sharper, more direct pain, her shortness of breath increased and she had her son drive her to the emergency department.

Sharp Stabbing Chest Pain, Oxygen Saturation’s at 98-99%

Courtney described her pain to the emergency room doctor as a sharp, stabbing in her back, just like back pain. She tried not to breathe, her pain increased, but her oxygen saturation’s were at 98-99%, her vital signs were stable too, certainly she couldn’t have a blood clot. She was young.

She is Too Young to have a Blood Clot

The Emergency Department thought she presented like an ‘anxiety-attack’, and she was ‘too young to have a blood clot anyway’ (60% of people diagnosed with VTE are 70 and older).  Courtney continued to suffer in pain (without pain medication) and shortness of breath. FINALLY, someone ordered d-dimer blood work, which came back positive.  She was rushed for a CT scan and, ‘suddenly’, four weeks and FIVE healthcare ‘textbook’ assessments later, Courtney was diagnosed with a pulmonary embolism.  She finally got the treatment she deserved. 

Courtney, had not only one pulmonary embolism in her right lung- she had another in her left lung too. She stayed in hospital for a week. Holy shit!

Patrick (again)

The second (yes second) time Patrick developed clots, we had returned from two 7+ hour long flights, he also had a cold.  He told me his leg felt weird (it was the leg opposite to his original foot break).  He said, “It’s not like the time I had blood clots.  It’s different.”  I looked at his leg, no redness, no swelling, no loss of pulses or change in temperature from one leg to the other.  I even took photos of the back of his legs so we could inspect them to see any variation.  Nothing.

He Kept Talking About His Leg

He kept talking about his leg, “can you look at my leg again?”, “my leg feels weird.”, “my knee feels like it is hurt, but I haven’t worked out, so I couldn’t have hurt it.”, “can you look at my leg again?”  “I feel like something is wrong. Maybe it’s my cold.”

The day before Thanksgiving day, after him repeating the same comments over and over again (for 4 days), and honestly, me getting frustrated-  I called around to find an ultrasound, because I had that sinking feeling again in my gut. We drove to an urgent care 40 minutes away.

I recall feeling desperate that she understand our story

The doctor was fantastic.  She did a thorough examination and listened really well to his concerns and to me, describing his last non-textbook DVT presentation.  I recall feeling desperate that she understand our story and that she not think we are crazy!

She heard us, believed us and ordered an ultrasound- but the techs were gone home for the day (it was the evening before Thanksgiving Day after all).  The physician outlined 3 thorough scenarios to choose from. We opted for a prophylactic lovenox shot (just in case) and going to the ED early in the morning to get an ultrasound.

Thanksgiving Day we were on the road at 04:30a to the emergency department about 50 minutes away.  They brought us right back, after we told them of the day-before events. Patrick had an ultrasound and blood drawn and in 2.5 hours we were discharged.

Patrick had developed TWO new, and large femoral and gastric venous clots. Holy shit.

What You Need to Know about VTE and Prevention

Listen and Act

If a family member talks often about a certain ailment, ask lots of questions to find out more.  Listen and act.  Patrick and Courtney never complained about anything, but their continued questions, visits to the doctor and concern were an alert that something was wrong. Listen and hear.

If Anyone is in Pain, Ask for Help

If anyone is in pain for longer than a couple days.  Or if the pain is unusual, bring them to the doctor or an urgent care to find out more information. If they send you away with ‘all is normal’- ask yourself…is this new behavior normal for them? If it isn’t, ask for a second, third, fourth or fifth opinion!

Trust Your Gut

Trust your gut. If someone continues to have the same symptoms, and they get worse, go back to the doctor, or go to someone different for a second opinion.  Sometimes, you’ll have to go back three, four or five times to find an answer.  Please do.  Be unafraid to ask for more information.

Be Unafraid to Ask for More

Healthcare providers are human too, so be unafraid to ask for more.  More information, more visits to the doctor, more answers, more anything you need!

The healthcare system is also run like a business.  Mistakes and misses can happen. No one makes a mistake on purpose, but the system can be flawed and imperfect.  When you don’t understand something, ask for more clarity and to have answers explained in layman’s terms. Or bring a Nurse Coach with you to act as an advocate.

People are not Carbon Copies

Not everyone will look like the textbook description, as people are not carbon copies.  Look beyond the basics, ask questions, listen and ask for clarity when a loved one is trying to tell you they are sick. 

When Someone is Sick, They Don’t Want to Be

When someone is sick, they don’t want to be, so often, they will not tell you the whole story.  They may not tell you how much pain the are really in, or, they don’t want you to worry, or take up your time, or cause you any inconvenience, or for many undisclosed reasons will hold back. Maybe it’s Christmas, or Thanksgiving, or someone’s birthday…

Sometimes, your loved one will withhold information, feeling like they are protecting you from it.  Ask questions, show concern and interest. And act if you think something is not quite right.

You can be Young and have a Blood Clot

60% of people diagnosed with a VTE are 70 years and older, however, that leaves 40% of those diagnosed at ages less than 70.  Even children can be diagnosed with VTEs.  Blood clot risk increases after age 40.

Flying is a Risk for Blood Clotting

A flight longer than 8 hours greatly increases VTE risk.  Prolonged sitting causes venous stasis, or blood to pool in the veins.  Pressure from the back of the seat, crossing legs, or legs squished into cramped quarters can increase clotting risk. In flight simulation models show an increase in platelets (one of the clotting components in blood) after 6 hours flight time.  Climate dryness and dehydration increase blood concentration or thickness. Long car, bus, or train rides also increase the risk for VTE.

You can be Fit and Healthy and Still Get a Blood Clot

Even athletes develop VTEs.  The stereo type that only sedentary or obese people get blood clots is false.  Patrick and Courtney are both athletes- young athletes, fit and strong, and they both developed blood clots.

How to Prevent Blood Clots

• Know the textbook signs and symptoms, but also know that you are not a textbook and can have different symptoms. 

• Stay hydrated

• Get up and move

• Elevate your legs if you can

• Try not to cross your legs

• Take breaks on road trips

• Wear loose clothes

• Know your personal risk factors

You are loved, Nicole

NICOLE VIENNEAU, MSN, RN, NC-BC

~Health Protection Expert & ‘Head’ Motivator!

Nicole knows how to inspire you with habits and behaviors that protect your health.  She understands the science to support you and makes learning with action fun!

Nicole’s Memere (grandma in French) lived with dementia after 13 strokes slowly stole her fire, her wit and her life.  Through  Memere, Nicole learned the gift of humor and creative ways to see hidden messages that can be difficult to express.  Nicole uses these skills to create purpose, vitality and health with the Build Your Health System at Blue Monarch Health, PLLC

Nicole achieved a Master’s in Nursing Science from the University of Arizona, and a board certification in Integrative Nurse Coaching from the American Holistic Nurses Credentialing Corporation, and she is Senior Faculty with the Integrative Nurse Coach Academy. She is a yoga teacher, personal trainer, and group fitness instructor and enjoys healing in nature while hiking and biking the Pacific Northwest trails with her husband or lounging in the sun with her cat babies. Email Nicole 

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Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.