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 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: Lucky Two Times by Dorothy Faulk

 

I really related to Julie’s story. I too am a two-time survivor of PE. I am also the mother of a son that had multiple PE’s and survived against the odds. I would rather be writing a story about how I am the winner of multiple state lotteries. As Mick Jagger would say, “You can’t always get what you want.”

My first PE was 17 years ago. I had been on a long car trip in a small car. The pain in my right calf on the way home was so severe I felt that it had to be a DVT. I went for an ultrasound the next day and no blood clot was seen. Over the next several weeks my ankle area became more swollen and painful when I walked. My doctors thought it was inflammation in the ankle but none of the medications provided much relief. Then the chest pain started and I began coughing up blood clots. I went to the ER and PE’s were diagnosed. I recovered fairly quickly after a couple of weeks or so. I stayed on Coumadin for several years before I was allowed to stop. My thoughts at that time were it had been a scary experience but now that was all behind me. Now I compare it to being on a kiddie roller coaster. Up a hill and down quickly, smoothly and get off.

My next diagnosis of multiple PEs was on 2/13/2014 at the age of 62. This time I did not have the same symptoms as my initial DVT. I felt tightness in my right calf but nothing else. Several weeks later I started having back and chest pain and became short of breathe. I put off going to see the doctor or presenting at the ED. I thought it was probably nothing, I knew the symptoms of a DVT and I did not have any. I considered the tightness just a pulled muscle. But I felt so lousy. I debated internally, “yes, I would go” then “no, I wouldn’t” to see a doctor. Finally while at work I left my office and walked into my doctor’s office during their lunch hours complaining of chest pain and shortness of breathe. I was worried about bothering them for nothing. I was taken immediately back to an exam room for an ECG.

Dr. Nandini Ramroop came in and told me there were “disturbing changes” on this current ECG compared to my last one. The next thing I know, I was in a wheelchair heading to Baptist Medical Center South Emergency Department where they were ready for me. Everyone at Montgomery Primary Medicine Associates could not have been nicer or more efficient. Here I was again, back in a seat for an unwanted and now scarier roller coaster ride.

I imagined hearing the click, click of gears pulling me slowing up a steep hill while they ran multiple tests in the hospital. When the CT with contrast showed blood clots, it was as if that coaster had been released to drop full speed straight down and before shooting off into a whole run of curves. I could see the difference in the technicians’ body language as they worked around me. My stomach was in my throat as I watched. I was whisked into ultrasound where they found the DVT in the right popliteal, same place as last time.

I had another DVT but this time it came silent. It was hard to call my grown children and tell them about this. I was a mother first. I downplayed the event and reassured them I would be alright. My son Jim lived a couple of hours away (he was the one that had multiple PEs) and he drove to the hospital immediately. He knew first hand He was right there with me in the hospital in no time.

A friend of mine worked with Dr. Narinder Bhalla and called him about my PEs. He had been the principal investigator in a clinical research study using the EKOS procedure for PE. The study was closed now but he continued using the FDA approved process. Dr. Bhalla drove back from out of town to perform the ECKOS procedure (EkoSonic Endovascular System) that used ultrasound transducers and selective infusion of physician-specified fluids, including thrombolytics directly onto the clot. My personal roller coaster had shifted over onto a new track through the cardiac procedure room. I had another climb to make. Again, I received great care and the procedure was a success. I am so thankful for my friend Leigh Burnett and Dr. Bhalla. If this was a story about a carousel, they should both get gold rings.

Afterward the procedure and recovery, I was put into a special cardiac care unit with eight different IVs going at once. No only could I hear the EKOS machinery whirling with my ears but also the clicking and clanking of the ride in my mind. I didn’t know if another hill or corkscrew turn was ahead. I just knew I had to stay strapped in tight and finish.

My daughter Amber and son Mike called me as well as the nurses during that time. Jim visited as well as friends. It is a lot easier being on a roller coaster with others near you!

The worst part of the EKOS treatment – at least for me – was the requirement to lie flat on my back for days while the treatment worked. I have a history of periodic back problems. The pain from my back was horrible after the first 24 hours. I hurt so much I couldn’t eat. The Baptist staff was wonderful and made sure I had ice packs and prescribed medication. They unstintingly gave me both professional and emotional support all during my stay, especially my nurse Billy. Billy, you rock!

After I was discharged, I thought I could get off the roller coaster. But I was too weak to do anything at home. Mike and his family drove down from Rhode Island to take care of me. Under their care, I began to feel better and was able to eat and regain some strength. I tried to return to work part time after two weeks but was just too exhausted after an hour or two. After about 2 or 3 weeks I was finally able to go in part time. Within two weeks after that I was back at work full time. It was one of hardest things I have ever done physically, mentally and emotionally.

If you think age doesn’t matter, it does when you get sick and your body has to recover. Is my life back to pre-Valentine’s Eve 2014l? No and I don’t think it ever will be. My right foot and leg remain larger than my left. I get pain in that leg after a few hours in the same position (lying down, sitting up or walking). When I talk I run out of breathe before I can finish a long sentence.

And my personal bump in the track, anxiety. When I feel tightness in my chest I worry that it is not heartburn but another PE. I don’t like running to the doctor since I really believe they will do testing and find nothing. So I wait and see. The last time I did that, it almost cost me my life. I think this is the worse part of my recovery, how frequently I have similar symptoms. I am on Xarelto and know that the risk of a blood clot is low. But it’s not non-existent. So that roller coaster has never stopped in my mind. My chest hurts, bump, my leg hurts, bump, bump my ride goes. And I wonder will it ever stop so I can get off?

I am so grateful for all the hard work that goes into this web site devoted to support and information about PE’s and PE survivors. Thank you.

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

Meet Brian Vickers

Soon after I was diagnosed with DVT and PE in June 2012, I began searching the internet for more information about blood clots – what they were, what happened and what it meant for me long-term. I had never felt more scared and alone in my life. I had no one to talk to who had been through what I had, and I felt like no one was talking about what I soon found to be a serious and all-too common public health threat. According to Stop the Clot (National Blood Clot Alliance), one person dies every six minutes in this country from a pulmonary embolism or blood clot in the lung. Every minute of every day, someone is diagnosed with a deep vein thrombosis – putting them at risk for a potentially deadly pulmonary embolism. The majority of these deaths could be prevented, but too many people don’t know the symptoms and signs, including medical professionals. Blood clots kill more people than AIDS, breast cancer and car accidents combined in a year, yet they are virtually unheard of by the general population. One of the reasons I started BCRN was to not only help people through the recovery process, but to raise awareness about this life-threatening condition. Throughout my recovery, I watched many celebrities and athletes survive DVT and PE, yet not talk about what happened to them in a public forum. While I realize that is a very personal choice (just like I chose to talk about it), I had hoped someone would come along who had the platform for raising awareness across the country and globe. That person is race car driver Brian Vickers. Not only is Brian a two-time blood clot survivor, he is also a widely recognized NASCAR Champion who has been very transparent in sharing his story and raising awareness about DVT and PE. And recently, I had the opportunity to meet Brian Vickers.

I have been fortunate enough to speak with Brian on two occasions about how blood clots have changed his life and about how he is raising awareness on and off the track. Since first reading about Brian’s story, which I encourage you to do here, I have felt a strong connection between what he went through and what I went through. We both were young (under 30), athletes and had clots come out of nowhere, completely altering our current life paths (his racing and mine running and a new career). Brian describes a lot of the emotions I felt during my diagnosis in this video of his story (click Watch his story) – emotions of hopelessness and loss that I think many of you can relate to. Brian also delivers a message of hope and that is, we’re all dealt a particular hand in life, which we can’t help, but it’s what we make of the hand we’re dealt that counts. According to Brian, “The good news is your life is not over! It might be different or over as you knew it, but it is not over. Life is what you make of it. You have to get up and keep fighting. Explore your alternatives, know your options. One, look at the bright side, your life may change, but it is not over and that in and of itself is a blessing [read more from this one-on-one interview with Brian].” In terms of awareness, Brian often sports the No. 55 Dream Machine sponsored by Xarelto, the Official Blood Thinner of Nascar and has a new commercial talking about his experiences with the medication (click Watch Our TV Commercial). I don’t know about you, but when I watch the clips, I feel like Brian is talking right to me about blood clots and his story – because he is!

I am extremely grateful to Brian for the time he has given to talk to me and you, the readers, and recently had the opportunity to thank him in person at the Kentucky Speedway. Not only was I excited to meet Brian Vickers, but it was my first-ever NASCAR event, which was thrilling in and of itself. I was able to meet Brian, chat with him for a few moments, shake his hand and extend my gratitude for his efforts in raising awareness – from me and all of BCRN. It was an experience that I will surely never forget.

Here are some pictures from the weekend to share with each of you.

Driving (via golf cart) down to the garages and pits.

Driving (via golf cart) down to the garages and pits.

Welcome to the Kentucky Speedway!

Welcome to the Kentucky Speedway!

Me, right after we arrived at the grages.

Me, right after we arrived at the garages.

The garages and grandstands in the background.

The garages and grandstands in the background.

The No. 55 hauler.

The No. 55 hauler.

No. 55 Dream Machine.

No. 55 Dream Machine.

The No, 55 waiting for an inspection in the rain.

The No, 55 waiting for an inspection in the rain.

Me and Brian.

Me and Brian.

 

Reader Writes In. Is there someone you admire who has survived a blood clot and gone on to talk about it? Did you know Brian Vickers is blood clot survivor? Are you a NASCAR fan? Have you been to a NASCAR race?

There is hope for healing and you are not alone,

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A Survivor Speaks: My Factor V Leiden Miracles by Cathy Westveer

Hi my name is Cathy Westveer. This is my story about how I found out how I have Factor V Leiden heterozygous mutation. Back in 2002, my daughter, Britaney was about four months old; I was on the pill, and smoking. I started having left calf pain. I went to the doctor and the doctor ordered an ultrasound. Everything came back fine. A week went by the pain and swelling got progressively worst. My left leg was at least two times the size of my right leg; I was starting to have a hard time bearing weight on it. At that point, my husband, Ken took me to the hospital; they did not order an ultrasound because the one I had a week before that was negative. They diagnosed me with a strain/sprain and put an ace bandage on my left leg, and send me on my way.

By the end of week two I could not bear any weight at all on my left leg.  Ken was pushing me around in a wheel chair. Beyond frustrated, and in immense pain, it felt like someone was constantly jamming a knife in my  left  leg and hitting  my bone with it, that is the only way I can describe the pain. When I hit week three Ken was getting frustrated and really worried, he took me back to the doctor, I put up a fight, because I was worried my doctor would think I was a hypochondriac  at this point. My left leg was at least five times its original size and many different colors. I was in so much pain and having a really hard time nursing Britaney.

In our PCP’s office I was sitting in the wheel chair holding Britaney in my lap, my doctor looked at my left leg and said I might I have compartment syndrome. He told me for the length of time I had the symptoms and how bad my leg looked if that’s what it was, I may never be able to walk again. I sat there balling my eyes out, holding my daughter thinking to myself, I am only 26, and how could it be that I may never walk again?  He immediately sent me to a Vascular Surgeon, Dr. R., he said the same exact thing my doctor said, however he ordered another ultrasound, his ultrasound tech did an ultrasound. And to my surprise, shock and horror, I had multiple DVTS the entire length of my left leg!!! Dr. R. asked me if I had chest pain, or a hard time breathing? I said no. He wanted to admit me; I said only if I can have Britaney with me. He said no!  Ken and him talked a little bit, and agreed to let me go home, 72 hours bed rest, can only get up to go the bathroom. He put me on Lovenox and Coumadin. And for three weeks, he was having a lab tech came to my house every other day to draw blood to check my PT/INR. He also told me that I still had a chance of not being able to walk again, and the damage to my veins was permanent.

My PCP ordered a bunch of blood work!  And they discovered that I have Factor V Leiden Heterozygous mutation. My PCP sent me to a Hematologist, Dr. K. During my follow up with Dr. K,  he suggested me to not have any more children, but if I did I needed to talk to see him first, to talk preventative measures. About two years later we decided to have another baby. I went on Lovenox every 12 hours. We got pregnant. I had some bleeding and panic. I have had three miscarriages before my daughter, one of them I am pretty sure was a result of Factor V Leiden, because the baby had a heartbeat until 12 weeks, but that was before I knew I had Factor V Leiden Heterozygous mutation. Come to find out I had placenta Previa; I had to go on bed rest for a month. But other than that the pregnancy ran smoothly, other than the fact that my abdomen looked like a road map from the Lovenox shots, so many nasty bruises, definitely not a glamorous pregnancy.

Three days after Kenny was born, even though I was on Lovenox, Heparin, and Coumadin, I had left calf pain. Low and behold I had a surface clot. At this point my hematologist said, no babies, too much of a risk! He also told me I will never be able to go off of Coumadin. I had a hard time for years with this!  But I am now okay with it. I have two beautiful children!! Two Factor V Leiden Heterozygous mutation miracles.

In 2013 I was really having a hard time with keeping my PT/INR’S where they were supposed to be. They were all over the place. It was getting to the point that the phlebotomist who was drawing my blood weekly told me she was going to call my doctor and suggest her to have something put into my veins, because they were not letting the blood out anymore. And thanks to the Factor V Leiden groups I found on Facebook, including Forever Deborah, I heard about the self- tester for PT/INR. I brought that to my doctor’s attention. My doctor refused it to let me have it. After a good argument she broke down and told me she was going to call one of her fellow Hematologists to see what he advises!  Little did she know she called my Hematologist, and he was okay with the self-tester but he had something far better for me.

A new blood thinner, Xarelto, that was just recently approved for Factor V Leiden Patients, the only down fall with this new drug they still have not come up with an anecdote for reversing hemorrhaging, but there are not diet restrictions, and no blood work! I have been on it since March/April 2013, so far so good!  And finally living somewhat of a normal life with Factor V Leiden Heterozygous mutation!

Connect with Cathy in the comments below!