Raising Awareness with Kevin Nealon

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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 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.

Three Symptoms You Should Never Ignore

Deep Vein Thrombosis (DVT) and subsequent Pulmonary Embolism (PE) are, without doubt, the most painful injuries I have ever experienced in my life. As a prior athlete, I had become accustomed to pain to some extent. After all, training for a half marathons is not meant to be pain-free. My legs hurt, my feet hurt, my shoulders hurt and even my lungs hurt at different points throughout my training. Growing accustomed to ongoing knee pain actually contributed to a delay in my seeking medical treatment for my DVT because I thought it was a result of a recurring overuse injury. I finally went to the Emergency Room (and only after instruction from my family physician) when I was struggling to breathe. Pain, as I have come to find out, is also a part of recovery from a DVT and PE. As we become more accustomed to pain during recovery, there are three symptoms you should never ignore when it comes to your health.

Learning to gauge what pain is critical and what is a normal part of recovery can be difficult and, above all else, it is important to remain in contact with your physician about your specific symptoms. Pain, for me, comes and goes now, two years out from my DVT and PE. Some days I feel great and other days it is still a struggle to get up, get dressed and walk up the stairs because of pain in my leg affected by DVT or pain in my side from the PE. While the pain has lessened over time, I did not know what pain was normal and what wasn’t in the beginning. Two months after I was admitted to the hospital with the PE, I was re-admitted with pain in my same side, this time as a result of pleurisy (or inflammation of the lining of the lung). I called my doctor and he indicated given my very recent history of PE, it was better to get it checked out than to wait. And, when in doubt and regardless of the perceived severity of your symptoms, get checked out, especially these three symptoms!

As time progressed, I learned to gauge pain, but once again found myself in the ER more recently with a severe headache that lasted over a day and caused blurry vision. That was abnormal for me, something new and a growing concern the longer it persisted. Again, my doctor advised that given my history of clotting and increased risk of stroke due to Antiphospholipid Syndrome, it was best to get it checked out. In this case, it was just a headache (presumably brought on by lack of sleep and stress and maybe a protruding wisdom tooth), but again, I did not know.

Now, after these experiences, I know there are three symptoms you should never ignore – regardless of your past medical history.

1) Difficulty Breathing/Shortness of Breath

Shortness of breath has many different causes. For example, known and chronic heart disease can cause breathlessness if your heart is struggling to pump blood throughout your body.While you can have difficulty breathing with, for example, pneumonia or bronchitis, it can also be a symptom of something life-threatening such as a heart attack or a PE. You should seek immediate medical assistance especially if your symptoms appear suddenly, are long-lasting, are new or do not subside with regular rest.

2) Chest Pains

Causes of chest pain can vary from minor problems, such as indigestion or stress, to serious medical emergencies, such as a heart attack or PE. The specific cause of chest pain is often difficult to diagnose without medical attention. Chest pains that appear suddenly are of significant concern and can be symptoms of a PE, heart attack or even a stroke. Chest pains may present as numbness or tingling in the chest area, back or even the shoulder arm/area. You should seek immediate medical assistance if you experience chest pains that are sudden and unexplained.

3) Headache (sudden onset, long-lasting or especially one that causes changes in vision or speech)

Common types of headaches include tension headaches, migraines, sinus headaches, and headaches that begin in your neck. You can have a headache with a cold or flu or as a result of other illness. They can range from mild to severe in symptoms. Headaches that are particularly concerning are the ones that come on suddenly, last for an extended period of time or cause changes in vision and/or speech as these can be symptoms of a stroke or blood clot. You should seek immediate medical assistance if you experience a headache with any of these symptoms.

The bottom line is, you know your body best and as you are recovering and learning what pain is normal for you, it is important to keep in touch with your medical professional about any sudden or unexplained symptoms you experience. If you cannot get in contact with your doctor or are concerned, chest pains, shortness of breath and headaches are three symptoms you should never ignore when it comes to your health.

Share your story. Do you agree that these are three symptoms you should never ignore? How are you listening to your body?

There is hope for healing and you are not alone,

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What is Antiphospholipid Antibody Syndrome?

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June is Antiphospholipd Antibody Awareness Month. But, what is Antiphospholipid Antibody Syndrome, anyway?

If you’ve never heard of Antiphospholipd Antibody Syndrome (or APS), you are not alone although, the disease is not as uncommon as you may think – as people are tested for different blood clotting disorders after a clotting incident, more and more people are being found to have APS. Women are more likely than men to be affected by APS. Some estimates say that 75% to 90% of those affected are women and while APS is believed to be responsible as the cause of multiple miscarriages, thrombosis, young strokes (up to one third of people under 50) and heart attacks, it is rarely discussed as a relevant health issue, particularly for women. Still, just about 1% of the U.S. population is believed to have APS making it a rare and sometimes ignored condition.

So, what is it exactly? Antiphospholipid Antibody Syndrome 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. Antibodies are proteins in the blood and body fluids that bind to foreign invaders like bacteria and viruses and help the immune system destroy and remove them. Sometimes the immune system doesn’t function properly and makes antibodies against normal organs and tissues in the body or, in the case of APS, proteins in the blood. There are two known forms of APS. APS may occur in people with systemic lupus or other autoimmune disease, or in otherwise healthy individuals (Source: http://apsfa.org)

In people with APS, blood basically clots when it shouldn’t creating the potential for serious side effects such as DVT, PE, heart attack, stroke, aneurysm, etc. Women with APS may have difficulties with pregnancy. During pregnancy, women are at higher risk of developing blood clots and preeclampsia (high blood pressure). In APS, pregnancies are often lost because blood clots form in the placenta and starve the baby of nutrition. Some women may have trouble getting pregnant, while others may experience repeated miscarriages. Blood clots that develop in the placenta can cause fetal growth problems, fetal distress, premature birth, or pregnancy loss. Expert care and close monitoring of the pregnancy is essential by a doctor knowledgeable about APS or high-risk OBGYN (Source: http://apsfa.org).

APS is a lifelong disease, of which there is currently no cure. In general patients who have had a blood clot (i.e., stroke, heart attack, DVT, PE) and have persistently positive tests for antiphospholipid antibodies should be treated with anticoagulants (such as Warfarin) indefinitely. Discontinuing treatment after a fixed period of time, such as six months, is common after a clotting incident, but may be quite dangerous in APS patients. In some patients with a history of blood clots, antiphospholipid antibodies may disappear after a certain period of time, making them hard to detect during routine lab tests. It is not known whether it is safe to stop anticoagulation in this situation of transient antibodies. Consultation with a doctor experienced in treating APS, often a hematologist, is recommended for the treatment of APS (Source: http://apsfa.org).

APS is not only a difficult disease to understand, but difficult to explain to others as well. A person with APS may look exactly like they did before – on the outside. But, he or she is struggling internally with a disease that always has the potential to cause serious and life-threatening complications. That is not to say people with APS have to stop living normal lives, it just means they must be aware of what is going on in their body including paying attention to symptoms of potential blood clots, taking medication regularly as prescribed, following up with a doctor or specialist as recommended and taking care of oneself.

In terms of autoimmune diseases, APS is actually one of the more common ones, but is often not tested for or misdiagnosed by physicians. If you have suffered a clotting incident, please make sure the hospital (or your doctor) checks for things like autoimmune and hereditary clotting factors.

I was diagnosed with APS after my PE, thanks to the persistence of one hematologist who would not settle for birth control being the only contributor to my blood clots. After my diagnosis, I remember being very confused and unable to comprehend what the doctor was telling me. As time has gone on, I have found connecting with others has been the most valuable form of healing for me. I have also sought out as much information about APS as I can and while resources are limited at the present time, there are some organizations out there dedicated to raising awareness and spreading information about APS and other blood disorders. You can find my list of helpful resources below-

Resources for People Diagnosed with APS

  • APS Foundation of America, Inc. – Founded in 2005, The APS Foundation of America, Inc. (APSFA) is the leading United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS).
  • Antiphospholipid Syndrome Facebook Support Group – Antiphospholipid syndrome (or antiphospholipid antibody syndrome) (APS) is a disorder of coagulation, which causes blood clots (thrombosis) in both arteries and veins, as well as pregnancy-related complications such as miscarriage, preterm delivery, or severe preeclampsia. The syndrome occurs due to the autoimmune production of antiphospholipid antibodies (aPL). The name Antiphospholipid Syndrome is a misnomer because the target antigen of aPL is not phospholipids but actually plasma proteins that bind to phopholipids (eg: [[β2-glycoprotein 1]] or prothrombin). This is an open support group where we come together to talk about it.

Share your story. Have you been diagnosed with APS? Have you ever heard of APS? What is most troubling or interesting to you about the disease? Has APS changed the way you live your life?

There is hope for healing and you are not alone,

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