Raising Awareness with Kevin Nealon

Kevin Nealon Cover

You may know Kevin Nealon from his infectious comedies including Happy Gilmore, The Wedding Singer, Daddy Day Care and Anger Management or perhaps as a former Saturday Night Live cast member (1986-1995). Or, maybe you have seen him more recently on Showtime’s Golden Globe winning hit series Weeds.

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What you may not know is that Kevin is also an atrial fibrillation – or AFib – survivor. Just like so many of you, Kevin has battled a life-threatening medical crisis and also like so many of you, he is passionate about sharing his story to help other patients facing a diagnosis of AFib or who are facing a treatment of blood thinners as a result of blood clots, heart attack or stroke. Kevin has partnered with Mended Hearts, a national non-profit organization committed to providing peer-to-peer cardiac support for survivors of AFib and their caregivers from diagnosis to recovery, and Janssen Pharmaceuticals during March to help raise awareness about blood clots.

Each year up to 900,000 Americans experience a blood clot (DVT or PE), resulting in up to 300,000 deaths. Blood clots do not discriminate based on age, sex, lifestyle – or even fame, as in the case of Kevin. AFib is an irregular, or fluttering, heartbeat that puts people who have the condition at a five times greater risk for a blood clot that can cause a potentially fatal stroke. And in fact, AFib accounts for 15 to 20 percent of all strokes. It is estimated that 2.7 million people are diagnosed with AFib and many more do not even know it (Source).

While these are frightening statistics to say the least, speaking to Kevin about AFib was like talking to an old friend and his passion for raising awareness and ensuring that others do not feel alone as a result of their diagnosis and recovery is the resounding message he conveys.

“I love talking to people about the same health issues,” Kevin said, “It creates an instant connection.

Kevin was swimming in Mexico with his then girlfriend several years ago when he had a racing heart that was concerning enough to cause him to seek medical attention at the hospital. He thought he may be having a heart attack.

“In the hospital,” he said, “I joked about having to use the paddles on me to restart my heart. And then I found out how serious my condition was. They put me out and when I woke up the cardiologist told me the paddles didn’t work.”

Once back at home in Los Angeles, Kevin was diagnosed with AFib, which was an extremely emotional time for him.

“It was so upsetting to me emotionally and it really affected my life,” he recalls, “I was playing less basketball and missing out on playing with me son and that really started to affect me. When you have a family, you really want to be around.” Kevin remembered being very worried because AFib changed his thinking about his entire life and his previously active lifestyle.

As part of his treatment plan, Kevin was initially placed on Warfarin to prevent blood clots, which were the biggest and most concerning risk of AFib to him because of the possibility of stroke.

“I did not want to end up with a stroke,” Kevin said.

Kevin eventually switched to taking Xarelto after speaking to his doctor about his lifestyle and needs. For Kevin, a vegetarian, Xarelto allows him the freedom from known dietary restrictions and the freedom to travel to numerous appearances throughout the year without the constant need for blood monitoring.

His resounding message is that facing a life-altering medical condition is something we, together as advocates, can overcome.

“It’s not the end of the world,” Kevin says, “You can live again.”

Kevin advocates for finding a doctor you believe in, as he did, and to remain in constant communication with your medical team about treatment options.

“Ask your doctors about the benefits and risks of the blood thinners available to you and do what works for you.”

Kevin and Janssen Pharmaceuticals, along with Mended Hearts and myself, have teamed up this month to raise awareness about blood clots and blood clot related stroke and deliver a message of hope to those who are suffering from AFib, blood clots and stroke.

And, the good news is, you can help us raise awareness too. Visit www.Drive4Clots.com to watch a video featuring Kevin’s story (along with the stories of NASCAR’s Brian Vickers and golf legend Arnold Palmer), and for every view received, Janssen will make a donation to Mended Hearts. You can also make a difference for patients living with or who are at risk for blood clots and stroke by sharing this message.

Share this message on Facebook:

Visit www.Drive4Clots.com to watch a video featuring actor/comedian Kevin Nealon’s story (along with the stories of NASCAR’s Brian Vickers and golf legend Arnold Palmer), and for every view received, Janssen will make a donation to Mended Hearts to help raise awareness about AFib, blood clots and stroke during #BloodClot Awareness Month.

Share this message on Twitter:

Visit www.Drive4Clots.com to watch videos featuring real stories about blood clot survivors and make a difference. #BloodClot Awareness

Share your story. Did you know Kevin Nealon’s story? Have you or someone you know been diagnosed with AFib? What are you doing to make a difference this month?

There is hope for healing and you are not alone,

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Thank you to Janssen Pharmaceuticals, Kevin Nealon and Michele Packard-Milam of Mended Hearts for the opportunity to discuss AFib, blood clots and blood clot related stroke and raise awareness during Blood Clot Awareness Month and beyond. Together we can make a difference.

A Survivor Speaks: The Trip of a Lifetime by Lori

In 2010, I experienced pain in my calf, which I thought was a charley horse and ignored for several weeks. When my leg and foot began to swell, my husband insisted I get checked out. I went to a walk-in clinic and was immediately sent to the ER. I was diagnosed with a DVT in my lower left leg. I was shocked! The doctor said it was caused by birth control pills, which I had only been taking for about six months for the hormonal benefits. I spent five days in the hospital, followed by two months of bed rest. After six months, my doctor took me off Coumadin, despite being diagnosed with Factor V Leiden.

Fast forward to February 2014. My husband and I were going to New York City for a romantic Valentine’s Day weekend. The week of our trip, I wasn’t feeling good. I had been working out very hard with a trainer and also tried a new exercise class. My thighs hurt, but I thought I just over-exerted during my workouts and pulled a quad muscle. I got light-headed one time when I got up from my desk at work, but I paid no attention, thinking I just got up too fast.

On Valentine’s Day, my husband picked me up at work to go to the airport for our flight to New York. We parked and started walking to the terminal. Suddenly, I had to stop and rest every few feet. I wasn’t having any pain or shortness of breath, but for some reason, I just couldn’t move for more than a few steps. After what seemed like an eternity, I made it into the terminal. When I did, I had to sit down immediately, as I suddenly could no longer breathe. Someone nearby noticed my distress and called an ambulance. My blood pressure dropped to 75, my heart rate was over 170. I went into tachycardia and was rushed to the nearest hospital.

I had two PE’s in my right lung, four DVTs in my left leg, and my right leg was completely blocked from my knee to my groin. Instead of going to New York City for the weekend, I was now fighting for my life. Due to the amount and severity of the clots, I was transferred to the ICU. After a few days with no improvement, I underwent a procedure where catheters were inserted behind both knees and a clot busting medicine was dripped through my veins.  It didn’t work. My feet turned blue, the nurses had trouble finding a pulse and I was scared. The doctors then went in again and basically “scrubbed” the clots from my veins. I spent the next five days in ICU, urinating blood and unable to move. I finally began to improve and was moved to a regular room, where I stayed for another week while they tried to get my INR to a therapeutic level.

It’s now five months later and I feel pretty good, other than some chest pain and extreme fatigue from anemia. I think about how lucky I am and that I got to the hospital in time. At times it’s overwhelming to think how close I came to dying. I also wonder though, why I survived and others don’t.  It’s hard to not overreact to every ache and pain, but also remember how important it is to get things checked out. It’s a delicate balance. I’m happy to say we finally made it to New York City over the 4th of July weekend this summer! I was anxious about flying, considering my close call but I made it! I don’t like the fact I’ll be on Coumadin for life, but each time I take it, I remind myself that I have been given another day to live and that I’m a survivor!

Thank you, Lori, for sharing your story with BCRN!

 

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.

Also visit

There is hope for healing and you are not alone,

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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…..so, 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:

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Did I take my medication?

Did I take my medication

I have never been good at taking – or more like remembering to take – my medications. As you know, it is imperative for individuals receiving anticoagulation therapy to take their blood thinning medication on a daily basis. An anticoagulant helps your body control how fast your blood clots; therefore, it prevents clots from forming inside your arteries, veins or heart during certain medical conditions. If you have a blood clot, an anticoagulant may prevent the clot from getting larger. It also may prevent a piece of the clot from breaking off and traveling to your lungs, brain or heart. It is important to note, the anticoagulant medication does not dissolve the blood clot. With time, however, this clot may dissolve on its own. Dosages for warfarin (or Coumadin), a common anticoagulant drug, ordinarily range from 1 mg to 10 mg once daily (Source). The doctor will prescribe one strength and change the dose as needed (your dose may be adjusted with each INR result). Not only is it hard to remember to take medications, especially if you are not used to it, but it can be even more complicated if dosages vary day to day or change periodically. It is no surprise that people taking anticoagulants may often wonder, did I take my medication? Read on to discover my top tips for keeping track of yours.

OatBook
OATBook reminder

Did I take my medication? Not yet!

The OATBook is a mobile phone app that helps you track, monitor and store your complete INR history in one place; keep your dosage times consistent and never miss a dose; and stores your appointments and reminders. It makes managing your warfarin easy! I literally could not manage my INR/medication without it and it has become a crucial part of my Oral Anticoagulation Therapy, as the name OATBook suggests. The OATBook took a little time for me to get used to, but once I did, I quickly found it was essential to managing my warfarin dosages, INR levels and blood draws. Plus, it lets me know via an alarm when to take my medication daily (11:32 p.m.) and will continue to go off until I check that I have done it. It also reminds me when I need to get a prescription refill. It costs between $1.99 and $2.99 and is only available for iPhone presently. You can find it HERE. Also, be sure to read my full OATBook review and see more screenshots of the app.

Pillbox
2-weekly-pill-box-photo-researchers-inc

Easy to refill, easy to remember.

I use a pillbox in conjunction with OATbook. My phone tells me when to go take my medication via the app and the pillbox ensures that I actually did it if there is ever a question later (i.e. right after I go to bed and I get back up thinking did I take my medication? The pillbox is very inexpensive (I’ve seen them for a $1 at the dollar store!) and can be found at any drugstore, pharmacy or grocery store. It’s also great if you are going to be away for a few days, you can just take the box with you and not have to worry about carting around your pill bottles. I fill up my pillbox at the beginning of each week (depending on my dosages from the doctor) and am good to go until the next blood draw.

Smartphone Calendar/Alarm/Reminder
smartphones_rect

Essential? Maybe so!

According to forbes.com, more than half of us have a smartphone nowadays. Why not use yours to keep track of your medication? Use your calendar, notepad, reminders, or alarm clock to note when and how much medication to take. You could also set an alarm on your watch. Whatever works for you – works!

Traditional Calendar/Notebook
pen and paper

There’s nothing quite like it…

Write it down – the old fashioned way. Check it off in your calendar, include it in your daily reflections, add it to your To-Do list or put a post-it on your bathroom mirror.

Share your story. How do you remember to take your medication? Do you have any great tips to share? Do you struggle to remember to take your blood thinners?

There is hope for healing and you are not alone,

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How long will I have to take blood thinners?

how long will i have to take blood thinners

It can be very overwhelming in the days, weeks and even months following initial diagnosis of a blood clot in the leg, thigh or pelvis (DVT) or lung (PE). Initial treatment generally involves extensive hospitalization; a battery of tests including blood draws, scans and X-rays; perhaps thrombolytic therapy or clot-busting drugs to break up clots inside your blood vessels; or even surgery to place a filter in the groin area or to address an underlying and more critical issue at hand. Most, if not all, patients are put on anticoagulants – or blood thinners – for some amount of time ranging from a few weeks to a lifetime. Blood thinners decrease your blood’s ability to clot. They’re used to stop blood clots from getting larger and prevent clots from forming. Blood thinners do not break up blood clots that have already formed (the body dissolves most clots with time). As time goes by, the question soon becomes just how long will I have to take blood thinners?

It was one of the first questions on my mind once I could think clearly and for me, it did not come until after I was discharged from the hospital and was sitting in my hematologist’s office for my first follow-up appointment. I was more than hesitant when I asked then and just yesterday at my 16 month follow-up appointment, how long will I have to take blood thinners?

The answer was the same then as it was yesterday – I will have to take blood thinners for the rest of my life, due Antiphospholipid Syndrome. APS is an autoimmune disorder in which the body recognizes certain normal components of blood and/or cell membranes as foreign substances and produces antibodies against them, particularly in the blood, which causes clotting. I had slim hope that something would have changed in the last year, but it did not; while APS antibodies do come and go, the risk of them developing and producing another PE are too great to ever stop taking blood thinners.

Still, others will be on blood thinners for much less time or may go on and off blood thinners at different times in their lives. In fact, there are as many variables affecting how long a patient will have to take blood thinners as there are patients with blood clots. It all depends on the individual and most importantly, the reason for the blood clots to begin with. If you don’t know why you developed a blood clot, request a panel of tests to determine if there are any genetic or autoimmune factors that may have contributed to the clot as this can be critical in determining how long you need to take blood thinners.

In patients with an easily identified and reversible cause of a deep vein thrombosis (such as a recent surgery, strictly birth control pills, etc.) 4 to 6 weeks of therapy may be sufficient. Many patients who experience a DVT or PE with no identifiable cause (unprovoked) or strictly as a result of birth control may only be on blood thinners until initial concerns with the clot are resolved or birth control is stopped. This may be a few weeks at most.

For cases in which the risk of developing new blood clots remains high (such as in patients with certain cancers or even genetic factors, pregnancy, etc.), anticoagulant therapy may need to be continued for months to years.

In the case of someone with recurring clots (genetic or autoimmune disorders or additional medical complications that may contribute to clotting), he or she may need to take blood thinners lifelong (//preventdvt.org).

Doctors may recheck the leg and/or lungs with a Doppler imaging scan (or ultrasound) between 3 and 6 months after the initial clot. There would not be enough change to require a scan any sooner than that and keep in mind; your clots may never completely dissolve, resulting in residual scar tissue that may always be visible through medical scanning.

Most patients who have suffered from a PE and/or DVT are placed on blood thinning medications for 3-6 months as a general guideline. Again, it is of vital importance to discuss reasons for clotting with your doctor as well as your individual risk for a recurrence. Both will help to determine what your appropriate length of treatment should be.

Share your story. How long do you have to take blood thinners and for what reason? Did you expect to take blood thinners for as long as you are/did? What have you heard about length of treatment pertaining to blood thinners?

There is hope for healing and you are not alone,

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