February 26, 2014

March: Blood Clot Awareness Month

I seem to have always known blood clots were a serious health concern – especially if you had one in your heart, lungs or brain. I heard about them in the general sense; for example, when discussing the elderly who had passed away or when talking about recovery from a major surgery or hospitalization. I didn’t know the signs or symptoms; that fatality from a blood clot could happen within moments of the first symptoms; or that it would ever happen to me at 29 years old and as an active runner. I thought I had a simple running injury and if I had known the symptoms, it may have made the difference between a treatable Deep Vein Thrombosis (DVT), behind my left knee, and the Pulmonary Embolism (PE) that went to my lung and almost killed me. It was nearly two days since my calf started to hurt until I went to the Emergency Room, breathless and in excruciating pain, both in my leg and side. I couldn’t believe the extent of the injury to my body, mind and emotions. It completely changed my life – no aspect was left untouched. And the thing is, other people – like me and unlike me – don’t know or don’t think it can happen to them. March is Blood Clot Awareness Month and as a blood clot survivor, I am doing everything I can to spread awareness about this deadly and often treatable injury.

I know they majority of people I know do not understand what I went through during my PE and recovery. They do not understand my physical pain and how I could look okay in spite of it. They do not understand that I took almost a month before I could even breathe without the assistance of an oxygen tank and how I went from running several times a week to not even being able to walk from one room to another. They do not understand how I could not use the bathroom by myself in the hospital, that I was in a hospital room well-equipped for medical personnel to take life-saving measures at a moment’s notice or that I couldn’t even sit up for days on end. They do not understand how my personal relationships, professional life and self-confidence suffered, some to irrevocable ends.

I attribute most of this to the fact that many people simply do not understand blood clots and the damage they cause to the body. People understand what it means to have a heart attack, stroke or cancer, but they do not often understand what it means to have a blood clot. They also do not understand that it could happen to them. I am trying to change that and help spread awareness not only for Blood Clot Awareness Month, but always. Consider this post a crash-course in blood clots and while it is in no way all-inclusive, I hope to present to some useful information for you or others you may know who don’t understand what happens when a person has a blood clot. Share it, print it or post it! Let’s get the word out about this silent killer.

Just the Stats

  • Blood clots (DVT and PE) affect am estimated 900,000 Americans each year (Source).
  • Blood clots (DVT and PE) kill an estimated 300,000 Americans each year. The number of deaths from blood clots  exceeds those from breast cancer, AIDS,and motor vehicle accidents combined (Source).
  • Blood clots are a leading cause of preventable hospital deaths in the United States (Source).
  • Blood clots are the leading cause of maternal deaths in the United States (Source).
  • 1 in 3 people who are diagnosed with PE will die.
  • In 25 percent of people who experience a PE, the first symptom is sudden death.
  • One person every minute will be diagnosed with DVT in the U.S. One person every six minutes will die from a PE in the U.S. (Source)
  • 10 to 30 percent of people affected by DVT/PE will die within one month of diagnosis.

The Facts

Who…
  • Can get a blood clot? Anyone can develop a blood clot for a variety of reasons. There are many risk factors that increase your risk for a blood clot (see below for more detail). In a nutshell, you are at increased risk if you or a close family member have had a blood clot before; you have had recent major surgery; you have an inherited clotting condition; have cancer; are immobile for a long time (confined to bed, long-duration plane or car trip, etc.), or use birth control pills. It’s important to understand your own personal risk and also that anyone can develop a DVT at any time.
  • Most commonly treats a blood clot? Patients commonly see their general practitioner for treatment of a blood clot, but can also see a pulmonologist, cardiologist or hematologist. A hematologist is best equipped to handle ongoing care particularly if the patient has a clotting factor or other blood condition/disease contributing to the blood clot.
What…
  • Is a DVT? DVT (short for Deep Vein Thrombosis) is a type of clot that forms in a major vein of the leg or, less commonly, in the arms, pelvis, or other large veins in the body.
  • Is a PE? DVT can develop into PE (short for Pulmonary Embolism), a dangerous condition in which the clot detaches from its point of origin and travels through the bloodstream to the lungs, where it becomes stuck and prevents blood flow.
  • Causes a blood clot? Blood clots may form when either the flow of blood in a vein slows, damage to a vein occurs, or the blood is more clottable (such as with a genetic or autoimmune factor already in the body/blood).
  • Is a blood thinner? Also called an anticoagulant, a blood thinner helps to prevent clots from forming in the blood. They include medicines like aspirin, clopidogrel or Plavix, Warfarin — more commonly known as coumadin — and a variety of other medications that are used in the hospital setting, including injections like Heparin and Lovenox.
  • Happens after someone is diagnosed with a PE/DVT? Often times, a person is admitted to the hospital, especially if he or she is experiencing a PE. They are usually put through a variety of blood and imaging tests to check for high blood clotting factors in the blood (D-Dimer) and actual blood clots (Dopplar Imaging scan). Patients are usually put on blood thinners of some sort as soon as possible. Patients are often treated with pain reliving drugs and sometimes surgery is performed to remove the clot or place a filter to stop the clot from moving (usually in the groin), but these procedures are not always performed.
  • Does it mean if someone has a clotting factor? If someone says they have a clotting factor, it usually means they have a genetic (an example would be Factor V Leiden ) or autoimmune (an example would be Antiphospholipid Syndrome) mutation or condition that causes their blood to clot when it should not.
Where…

  • Can you develop a blood clot? You can develop a blood clot anywhere you have veins, but they are most commonly in the leg and less commonly in the arms, pelvis or other large veins of the body.

Why…
  • Is a blood clot so damaging? A blood clot is damaging because, depending on it’s path, it can cause great trauma to the body’s circulatory system, including the heart. It takes time and energy for the body to heal damage done to the heart and lungs, even if it is micro-damage. A PE is consider a traumatic event for a person’s body to go through.
  • Isn’t there more public awareness about DVT/PE? A lot of times blood clots are not named as the cause of death because a person may have also suffered from underlying conditions, such as cancer. There seems to be more public energy focused on educating people about heart disease, diabetes and cancer, yet organizations like the National Blood Clot Alliance (Stop the Clot) and Clot Connect are making great strides to raise awareness. More recently celebrities such as NACAR’S Champion Driver Brian Vickers, 2010 Olympian, and two time US Sprint Champion, and a Master Sprint World Champion in Speed Skating Rebekah Bradford and Reality TV Star NeNe Leakes have spoken out about their personal encounters with blood clots to help bring awareness to the public.
How…
  • Long does it take for someone to recover from a DVT/PE? Recovery from a DVT and/or PE varies greatly from individual to individual and can take anywhere from several weeks to a year or more. Some people will face complications from DVT, including Postthrombotic Syndrome (PTS) for the rest of their lives.
  • Can I prevent a blood clot?  The good news is, yes, there are many things you can do to help prevent a blood clot. Stay active. Immobility increases the risk of developing clots. If you’ve been sitting for a long period of time (such as at your desk or while traveling) stretch your legs often; Maintain an ideal body weight; Know your risk factors for developing a clot (see below) and discuss with your doctor; Know your family medical history; If you are hospitalized or planning for surgery, ask your about what will be done to prevent blood clots (such as being placed on blood thinners or wearing anti-embolism, also called compression, stockings).

Did you know?

  • One-half of clot patients will have long-term complications and one-third will have a recurrence within 10 years (Source).
  • An estimated $10 billion in medical costs in the US each year can be attributed to DVT and PE (Source).
  • Blood clots are a treatable condition and often preventable condition.

You may want to know

  • A PE is sometimes called a “heart-attack of the lungs.”
  • Deep red is the awareness ribbon color for blood clots, including DVT.
  • Red and white (together) is the awareness ribbon color for PE.
  • Burgundy is the awareness ribbon color for clotting disorders.

DVT (and subsequently PE) risk factors include

  • Hospital stay
  • Major surgery such as abdominal or pelvic surgery
  • Knee or hip replacement
  • Major trauma such as an auto accident or fall
  • Nursing home living
  • Leg paralysis
  • Older than 65 years
  • Trips over four hours by plane, car, train or bus
  • Active cancer or chemotherapy treatment
  • Bone fracture or cast
  • Birth control pills, patch or ring
  • Hormone replacement therapy
  • Pregnancy or a recent birth
  • Prior blood clot or family history of blood clots
  • Heart failure
  • Bed rest over three days
  • Obesity
  • Genetic/hereditary or acquired blood clotting disorder

Symptoms of a DVT

  • Swelling in the affected leg, including swelling in your ankle and foot.
  • Pain in your leg; this can include pain in your ankle and foot. The pain often starts in your calf and can feel like cramping or a charley horse. It won’t go away with regular stretching, massaging or rest.
  • Warmth over the affected area.
  • Changes in your skin color, such as turning pale, red or blue or purple.
  • You need to know in about half of all cases, deep vein thrombosis occurs without any noticeable symptoms.

Symptoms of a PE

  • Unexplained sudden onset of shortness of breath
  • Chest pain or discomfort that worsens when you take a deep breath, cough or even lie down
  • Feeling light headed or dizzy, or fainting
  • Rapid pulse
  • Sweating
  • Coughing up blood
  • A sense of anxiety, nervousness or impending doom

What to do if you think you have a DVT

If you are at all concerned or have any of the symptoms listed above, make an appointment with your primary care physician or visit your local emergency room.

What to do if you think you have a PE

PE is life-threatening, seek emergency medical care immediately or call 9-1-1.

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There is hope for healing and you are not alone,

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May 22, 2013

Into the darkness

Read the first part of my story to get caught up.

Into the darkness cover photo 600 by 600

 

They say we are only given what we can handle in this life. But, lying alone (except for the nurse who was appointed to stand guard over me every second of the night, monitoring me for even the slightest change) in the cardiac intensive care unit after being admitted with a deep vein thrombosis (DVT) in my left calf and a pulmonary embolism (PE) that traveled through my heart and lodged in my left lung, I wasn’t convinced I could handle any of it. I had unexpectedly lost my mother just this time the year before and I was pretty sure I had quickly reached my lifetime limit of “things that can go wrong, will go wrong” as I plunged into the darkness. Turns out, I was wrong about that too – I should have known.

I missed my mom terribly, but was unable to focus on anything except the extreme pain I had felt that day and still now. In the ER, I was given morphine and then a cocktail of other pain pills, which took the edge off, but I couldn’t breathe without it hurting. I was given oxygen immediately and when I asked my guardian if I could get up to pee, he instructed I could not – in any way – move and that he would help me go to the bathroom. My choices were a catheter or a bedpan. I chose the later, he lifted me carefully, sliding the pan under me and turned his back. I waited for him to leave and he finally stepped outside of the curtain, but was back within seconds after the silence returned to the room, signaling my finish. It was dark, very dark, and I couldn’t see his face, but I asked him why he never left and he said it was his sole job to keep me company. I asked him if I would make it and he said I had good doctors to take care of me. Not exactly the answer I was looking for.

I remember being there, with him, for a few days and my family coming to see me. Everyone was speaking in hushed tones and I could barely feed myself. I wasn’t hungry anyway, though. I don’t remember seeing a doctor at all and I would later find out, my whole hospital stay was a blur of memories because of all the pain drugs I remained on.

From there, I was moved to a larger ICU room, sparsely furnished except for me – smack dab in the middle – and nothing else. It didn’t sink in until later, after conversing with a friend who faithfully visited in spite of her own fears, that the room wasn’t meant for comfort, it was meant to save my life in the even that I crashed. I get chills to this day recalling just how close to death I had come.

The hospital provided a battery of tests to diagnose my conditions – chest x-rays and imaging scans to look at my lungs and heart; Doppler imaging scans to check every organ in my body for damage; more Dopplers and scans to check my legs every other day and even an MRI to check my brain.

The DVT in my leg was severe and extended from my groin area down to my ankle. There was nearly no blood flow in my lower leg, as the veins were blocked from the clot just behind my knee. The vice feeling I had. About an eighth of my lung tissue was destroyed in the ordeal and was now dead, causing my lung to collapse. Yes, it did feel like a knife stabbing.

My thoughts – and then mostly incoherent sentences – consisted of “but I’m a runner” and “I am starting a new job on Monday so I have to go.” Neither would be happening anytime soon and one would not last through the summer, much to my devastation. I couldn’t believe this was happening, to me, nonetheless.

The medical staff, once they discovered I had been on oral contraceptives for several years, concluded that was the problem and once I stopped taking it (which I already had) all of my other problems would be solved. It wasn’t until a specialist got called in – to this day no one, not even him, recalls how – and discovered that I actually had antiphospholipid syndrome (APS), an autoimmune condition that causes the blood to clot when it shouldn’t. That specialist is now my Hematologist and I am convinced between him and my primary care physician who instructed me to go to the hospital after losing his own brother to a PE, are the reasons I am still here today. I didn’t understand what was happening and the Hematologist assured me the few times I remember speaking to him that there would be plenty of time to understand once I was no longer in such a volatile state. He told me I was very sick, lucky to be alive and not going anywhere anytime soon. I spent the better part of six days in the ICU and then another four on the cardiac care unit. At 29 years old, I was the youngest one there.

My husband, Dad, sister and three girl friends that visited kept me hanging on when I was sure I was about to lose it all. I remember being scared, lonely, irritated, angry, sad and in constant, unrelenting, at times unbearable pain. I saw bugs that weren’t there, had conversations that only I remember, others that only I don’t, and sent text messages that make no sense even to this day. I was not aloud to get up except for two days before I left the hospital and when I finally did, my legs turned to Jell-O beneath my body weight. It took one of my friends and my husband to help me shuffle to the toilet only four feet away from my bed. It took my friend holding me up while I used it and a nurse helping me wipe because I couldn’t move my arm behind me. I remember being mortified, angry, scared and in terrible pain. If this was how my life was going to be, I started to have serious second thoughts about being thankful that I was still alive.

“What happened to my life?” seemed like the understatement of the year. I couldn’t remember anything, at all. I continually asked the same questions over and over and over again. “What happened?” “Why am I here?” “Why can’t I go home?” “Did somebody call my job?” “Can I run?” “Why do I need that?” “What do I have?” “Did I die?” And, except for a select few of the ones who were convinced it was birth control and nothing else, everyone answered me again and again and again, no matter how many times I asked.

The hematologist told me very little in the hospital and looking back, I am thankful because I wouldn’t, couldn’t and didn’t understand any of it at the time – and there’s been nothing but time to start to figure it out since then.

One thing I was certain of, though, I was given a second chance at life and was determined, committed, adamant that I would not waste what I had been given. On the ride home from the hospital with my husband – toting and oxygen tank and bag of pills – I wailed about how life was meant to be lived and I was given a new lease to do so starting now. It wasn’t until weeks later that I discovered I survived something one in three people do not and that, to me, is proof that I was left to live here for a reason – and maybe part of that reason is telling all of you about what happened to me.

In healing there is hope and you are not alone,

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