Friday, January 25, 2013

HOW I SURVIVED MULTIPLE BLOOD CLOTS!


Coumadin for blood clots
Last summer, as I was nearing the end of a grueling three-set tennis match in 90-degree heat, I felt a very sharp pain in my left side, below my heart, and then just collapsed on the court. It was easily the most painful thing I've ever experienced. I could barely move. 

I wasn't sure if it was a heart attack, a ruptured spleen, a tumor, or what. All I knew is that it hurt like heck and that it was probably something serious. With the help of my tennis partner, I made it to the car and then to Sharp Memorial Hospital, where, after a bunch of blood tests and scans, the ER doctors discovered the problem: multiple blood clots in both lungs. 

The doctors at Sharp were amazing: very thorough and truly compassionate. When they told me the news, I was shocked and a little frightened. I spent a few days in the hospital, where I was treated very well, and the pain finally subsided in a week or so. I fully recovered. And ever since I've been taking something called Coumadin, which I now know is one of the most prescribed drugs in the United States and the number one most prescribed anticoagulant or “blood thinner.” 

I don't generally like taking meds, but Coumadin is literally a lifesaver. It's a very popular drug because blood clots are unfortunately very common. They occur for a variety of reasons. For me, it was likely related to the fact that I'm a three-time survivor of stage IV non-Hodgkin's lymphoma who still has some cancer in my body. 


Many famous folks have survived blood clots, including Secretary of State Hillary Clinton, who recently had a blood clot in the vein between the brain and and the skull behind her right ear. She, too, is on anticoagulant medication and, if her fiery testimony this week before the House and Senate on the Benghazi matter is any indication, she, too, has made a full recovery. 


I've learned that millions of people have survived blood clots and happily moved on with their lives. But when it first happened to me, I naturally had questions and concerns. When I went on Coumadin, one of my biggest fears was consuming too much Vitamin K, which the ER doctors told me can interfere with the effectiveness of Coumadin. An increase in Vitamin K can influence the time it takes for blood to clot (this is measured by a simple blood test called INR, or International Normalized Ratio). 


I was not on a multivitamin for the first few months I was on Coumadin, and my INR number was stable (it should be between 2 and 3). I wanted to start taking a multivitamin for obvious health reasons, but I was worried about how it would impact my INR. It seems every vitamin I looked at contained Vitamin K.


If you take a daily multivitamin with vitamin K or other nutrients that alter your INR, your Coumadin dose must be adjusted accordingly. This can be dangerous because missing a dose, stopping the multivitamin, changing the brand or even just changing formulations within the same brand can result in dangerous fluctuations of INR and should be accompanied by a trip to your area Coumadin clinic (my clinic here at the University of California San Diego is staffed by good people who've helped me every step of the way). 


Anyway, I was going to go on a multivitamin and just deal with the possibility of having to adjust my Coumadin dose. But then I discovered K Free Daily, a new multivitamin designed for people like me who have to take Coumadin. Unlike most vitamins on the market, K Free Daily contains no vitamin K, no niacin and less vitamin C and E than other multivitamins. These are the ingredients that evidenced-based research proves can change your INR.


When I find a new product, before I take it I typically like to go right to the folks who created it. So I contacted the developers of the vitamin, Aric Isaacson, a retail pharmacist, and Ashley Cohen, a clinical registered dietitian, and asked them a bunch of questions. They were both kind, receptive and knowledgable. 

Aric told me he and Ashley just wanted to do something positive for the many people they've met met who, like me, are taking Coumadin. He said patients can start or stop taking K Free Daily at any time during Coumadin therapy without having to get their INR checked and their Coumadin dose adjusted. They can also consume more Vitamin K from their diet without fear of going over the recommended daily allowance.  

“All multivitamins we studied, even those marketed specifically for this exact patient population, contain ingredients that have been clinically proven to increase or decrease INR in patients who are otherwise stable,” Aric said. “As health care professionals working closely with this patient population, this really scared us and drove us to come up with an original and unique multivitamin formula that poses no risk to these patients while still providing them with all the physical and mental benefits of a complete multivitamin.”

It may sound like a small thing, but it isn't. Finding this unique new multivitamin has boosted my comfort level. The folks at my Coumadin clinic told me that taking K Free Daily would be fine; they gave me the green light. 

Bottom line? While blood clots are potentially dangerous and can even be fatal, they are treatable, and preventable with medication. I no longer let the fear of blood clots get in the way of living my life. And here's the happy kicker: A few weeks after I went to ER with all those pesky blood clots in my lungs, my tennis pal and I finally finished that marathon tennis match. Guess who won?



8 comments:

  1. The exact same thing happened to my son about a year ago. I was always afraid of something like this. He is adopted and we know that both his birth father and grandfather died fairly young of blood-clot related problems. I've told him since childhood to inform his doctors of this. There had been no warning whatsoever, but he'd had trouble breathing for a couple of days, and found any exertion left him breathless. He woke up the 2nd night, hardly able to breath and with horrible pain. They thought heart attack of course, and went right to Emergency. His lungs were riddled with clots. He had injured a leg a few weeks before (which is what started his father's problems), and they think that little clots had broken off from that injury probably. What scared the holy hell out of us was to learn that they had traveled through his heart to get to the lungs. He had two little kids and twins on the way - it would have been a tragedy, as he was close to dying. So.....coumadin for him the rest of his life. I will forward this article to him -- he doesn't do much else to take care of his health, overweight, and no exercise. He's pretty passive in some ways, so the Vitamin K info is great to give him -- if he doesn't know already. Who knows if all doctors dealing with these patients know.

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    1. Thanks for this, Sue, this is a very dramatic and very familiar story and I'm very glad to hear that your son is recovering. My lungs, too, were riddled with clots, and I, too, thought it was a heart attack at first. I, too, was close to dying, according to my doctors. It's very scary. Needless to say, I am so glad there is treatment for this. Please give your son my best.

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  2. Hey Jamie,

    I'm a nursing student in RI and I'm working on a senior honors project about this very thing! It happened to my dad a few years ago and fortunately he survived. As you know it's such a common condition in the US and so many people don't know about it until it happens to them. Check out my blog at http://deepveindiscussion.blogspot.com/. In the fall I am going to be putting out a survey and I hope you will participate. I'll send you a link once it's available and I hope you'll pass it along to whomever you can. Glad to hear that you're recovered!

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    1. Thanks kate, my best to you and your dad. Keep in touch. My email is jreno@san.rr.com . Cheers!

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    2. Hi Jamie, hope all is well with you. I'm just putting up a survey as part of my honors project to test the public's knowledge of DVT/PE. The link for it is www.surveymonkey.com/s/dvtaware. I also have an educational website, www.dvtaware.net. I hope you'll pass my survey along to anyone you know who would participate. Thanks! (I emailed you this info too with the subject DVT survey)

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  3. Hello:

    My name Christina Martin and I am the Race Director for the Stop the Clot Chicago 5K run/walk. The run will be hosted on Sunday, May 10, 2015 Mother's Day on Montrose Beach in Chicago's Uptown neighborhood.

    This cause is very near and dear to my heart as my best friend Manu Williams who I love dearly passed away from a blood clot on September 28, 2014. He was only 36 years young. My new goal is to promote the dangers of blood clots.

    Please sign up for the run if you live in Chicago or donate
    www.stoptheclotchicago.com

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