{Hearts On 22} Rally For Research


Somewhere in this country a woman is experiencing the worst day of her life. She is in pain, she is scared, and she will never be the same. In the coming days, weeks, and months she will learn that her birth control was the cause of her worst day. That her birth control caused her stroke or heart attack or blood clot or pulmonary embolism. She knows it was her birth control because she survived. Many families never learn why their wife, mother, daughter, sister or friend suddenly died. They live their lives only knowing that she is simply gone.

Gone. If it were not for my fast acting care team, I would be resting in a little urn on a shelf. My mom literally came this close (shows fingers) to picking out my urn instead of my 27th Halloween themed birthday cake. I was lucky, I was the 1 out of 5 who survived a massive pulmonary embolism with infarction that lead to a stroke. Because of research I saw my 27th themed Halloween birthday cake, it had a jack o lantern on it and it was perfect. I survived my worst day possible.

I was weak, I felt cheated, and I was angry that my life was gone. I had to learn how to live in a new normal of Lovenox injections, INR draws, warfarin sodium, to many pills to count, doctors appointments and CT scans. I wasn't living the life of a 27 year old, I was living the life of someone much much older. Yet it was my life to live and I had one choice: "survive or give in." I chose to survive.

Survival is not perfect. This second chance I live is pretty fucking messy and hella awesome at the same time. I put on a red dress and never looked back. The American Heart Association gave me a platform to share my story, they put the voice back into the survivor and Now my story is saving lives. I meet women who come up to me and say I heard your story and I decided to talk to my doctor about my risks and what birth control is safe for me. That right there makes my little heart sing. I can't go back and change my story, but I can share mine to change someone else's story.

We know that my massive pulmonary embolism with infraction and stroke were caused by my hormonal contraceptive, but we don't know why. At the time I was healthy, I did not smoke, I wasn't over the age of 35, I wasn't over weight, yet it happened. Further testing showed that I was negative for Factor V along with a whole host of other genetic conditions that lead to clothing. I was genetically perfect, yet some how some way it happened to me.

If scientist can figure out why it happened to someone it shouldn't statistically happen to, we can stop it from happening in other women. In order to find that why, we need funds for research. The government is the largest financial contributor for medical research and if those funds get scraped my why goes out the window. The ability to save thousands upon thousands of lives goes up in smoke. You and I we can make a difference, reach out to your congressman & women and tell them that you support the funding of medical research. Come to the MN capital on Saturday @ 1:00PM central time and stand with us as we rally for medical research. Bring a poster, yell at the top of your lungs and make a difference, help us secure our healthy tomorrows.

Mostly let's face it, without research we are dead in the water, our doctors are only as good as the researchers who stand behind them and without them we have nothing.

{Go Red For Women} When A Doctor Fails

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We have talked about the statistics. We talked about the warning signs and about what to do when someone is having a stroke. What we have yet to talk about is that sometimes doctors fail.

On October 14, 2009 I went to the Alina clinic in Woodbury for my yearly exam and birth control prescription renewal. The doctor was more concerned about whether or not my insurance would pay for the pap because I was a few weeks early. She said “Ya know they only pay for one per year. Your last exams was in November 2008. So they might not pay and you will get a bill.” The doctor actually left the room for a few minutes so I could think about whether or not I wanted my exam. Still to this day I can’t believe she did that.

When she came back in the room she was rushing and barely listening to anything I was saying. I was getting annoyed so I changed my tone and said “look I am really tired, my right leg has been throbbing, I have redness and swelling in my calf and upper thigh. This isn’t normal for me.” The doctor looked me in the eye and said “well you said you haven’t been walking as much. Go home walk and drink more water. Here’s your script. Bye.”

With those words she left the room and I got dressed. If she wasn’t concerned then I shouldn’t be. So I didn’t give it a second though and I went on about my day. As the days went by I wasn’t getting any better. I had shooting pains and major swelling in my leg. Again I brushed it off, drank some water, and walked a little more. I had bigger things to tackle. I finished out my last few days at the pharmacy benefit management company and looked forward to staring my new job that Monday. I didn’t have the time to be sick, so my health it was shoved to the side. After all the doctor she wasn’t worried so I wasn’t going to worry either.

Monday came and I was super pumped for my new job. By the end of the day I did not feel well. The shooting pain was moving up my leg into my stomach and I had this massive head ache. When I got home I took some Tylenol and went to bed. I woke up fine on Tuesday and set out to conquer day 2 of my new job. I felt fine all day Tuesday. Wednesday afternoon would prove to be difficult. I had this pain it felt like someone was dragging a knife up and down my right side. My leg was so swollen it barely fit in my pants and I just felt sick. When I got home I took some Tylenol and went to sleep.

Thursday October 22, 2009 I woke up feeling fine. I had slight pains in my chest, I chalked it up to a cold and headed out to work. Fuck me, the freeway was bumper to bumper and I was worried about being late. I continued on I94, as I drove the pain in my chest kept on getting worse. It felt like thousands of knives poking me and when I tried to take a deep breath it felt like trying to inflate a tiny balloon. Again I said to myself “don’t worry you will be fine, all you need to do is make it to work, take some Tylenol and drink some water. My condition worsened, by the time I reached Saint Paul I could barely breath, my arms were going numb, my heart was racing, and I, I was fighting. Lexington Parkway, I made it there and took the exit. I drove all the way back to Woodbury. I remember thinking do I go home or do I go straight to the Hospital.

I chose the hospital and that is where my morning unraveled. The doctor ruled out a heart attack and he was leaning towards a respiratory infection. I apologized profusely for taking up their time. My blood oxygen level was below 50% and the doctor paused for a moment and asked if I was on a birth control I told him “yes, Yes I am. I am on the Nuva Ring.” The Doctor explained the risks of blood clots and the D-Dimer test to me. He told me, its most likely not that, but we want to be safe. The results came back and the results were not good. I was in trouble. I was sent off to CT and with in forty minutes the blood clot was found. I had a blood clot the size of a ten cent gumball in my left lung. It was wedged in the main valve leading from my left lung to my heart. My lung had signs of infarction, I had 20% tissue death in the lower portion of my left lung. My heart was barely getting any blood nor was my body getting the vital amount of oxygen it needed.

The Doctor ordered the highest dose of Heparin possible. He talked to me and tried to explain everything that was going on. A nurse he noticed that my blood pressure was climbing. I remember looking at the nurse and saying “I feel really light headed, like I am sinking, and and……..” In that moment I lost my words. In that moment I had a stroke. The staff gave me clot busters and started the Heparin drip. I was not going home for a while. At 26 years old, just five days shy of my 27th birthday I almost died. My life was forever changed and I was left to chart my course as a survivor.

In the coming days I would learn that my stroke was 100% preventable. On October 14, 2009 I described the tell tale signs of a possible blood clot in the leg. She knew I was on the Nuva Ring which was known to cause blood clots. All my doctor had to do that day was listen to me. She had the ability to order a D-Dimer, that test would have signified that I had a clot somewhere in my body, instead she dismissed my concerns and sent me home. Preventable was the hardest pill I had to swallow. I went through hell because a doctor didn’t give a fuck about me, she was more concerned about my insurance company paying than my health.

I had to endure three weeks of Lovenox injections, seven months of INR checks and take warfarin sodium in an attempt to keep my blood thin. Worst of all because of her oversight that day, I can no longer carry a child. OBGYN’s are suppose to bring babies into this world, not take away a woman’s fertility. They are suppose to advocates for women’s health and not be the reason a woman’s health fails. I was on a birth control, so as I told her “Hey my leg hurts, its swollen, red, and warm to the touch.” A red flag should of went up and she should have done her duty and ordered the D-Dimer. Her lack of concern made me dismiss a shit ton of red flags. I thought “the doctor wasn’t concerned, so why should I be concerned?”

The beautiful thing about a woman’s body is that, it never steers her wrong. I should have listened to my gut and pushed for a second opinion. That one doctor changed my perspective and now I fight for my own health. I am not afraid to ask for a second, third, or forth opinion. I will not give up or in until I find someone who is just as passionate about health as I am. I will be damned if I ever get dismissed by a doctor again. To be honest I don’t trust doctors anymore. They are only as smart as the paper their license is printed on.

The OBGYN I saw that day is fully aware of what happened to me. She actually called me and apologized. I said to her “Your apology cannot bring my lung function back, it will not restore my ability to have a baby, and it will not make your lack of concern OK. You can shove your apology up your ass. What’s done is done.” I cannot undo what she did to me, but I sure as hell can make sure no other woman endures my fate. If my story saves one woman or makes one woman pause and ask her doctor “what is my risk.” Then the hell I went through on that day was worth it, because I was able to make a difference in another woman’s life.
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{Women’s Health} Birth Control: Heroine or Foe?

Birth controlAll we are hearing about is the positive stories. About how birth control has revolutionized and changed the lives of women. What about the other side of the coin? Is it really as great as they claim? Is it really a miracle pill? An article published in Women’s Health magazine states that there are 7 benefits besides the obvious. http://www.womenshealthmag.com/health/birth-control-benefits I was first put on the pill in the spring of 2005 to regulate my monthly cycle. I had suffered years of (sorry over share) heavy bleeding and extremely short periods. The hormones in the pill didn’t seem to help and the doctor suggested that I try the Ortho Evra patch, I was in love and it worked. It worked so well that I used the patch from August 2005 to December of 2008. The bad part about the patch was that it hurt like hell when you pulled it off and it left glue residue behind. Which I racked up as minor annoyances and focused on the benefits.

The benefit was that the patch made my pre-menopausal body into the body of a normal 20 something. In December 2008 I got brave and asked about the Nuva ring, since I was planning on having kids within the next 3 years the doctor thought it would be a great option. So I gave it a whirl and for the most part it did its job. Up until October 2009 I was a believer, I thought the Nuva Ring was a gift from the heavens, until the moment I found myself standing at death’s door.

On October 22, 2009 the Nuva Ring almost took my life. I was admitted to the ER with an oxygen level of 40% and my heart was in sinus tachycardia, I was fading fast and the ER dr paused and asked “are you on birth control?” I said yes and he ordered a d-dime test which lead to a CT scan that revealed the massive blood clot that was stuck in the main valve leading from my left long to my heart and the lower half of my left lung had collapsed. As soon as the clot was found the life saving efforts began, I ended up having a stroke right in the ER, it’s probably the best place to be if you are having a stroke. I was only 26 and this, this whole thing happened 5 days before my 27th birthday. I spent more days in the hospital than I care to count and it took me 1 year to recover fully. My life became a cycle of lovenox injections, INR checks, pulmonology visits, CT scan, blood tests, therapy, and a mountain of medical debt. On the bright side I got pregnant 6 months after my PE/Stroke, it wasn’t ideal and I was considered a very high risk, sadly that joy was short-lived and my son left this world before his feet even touched the ground. After his death I learned that he will be the one and only child I will carry.

It took me even longer to come to terms with the fact I will never be able to have a child of my own. I spent thousands of dollars on 2nd, 3rd, 4th and 5th opinions, at the end of the day the facts were still the same. I made a choice, I put faith in our government and I believed that I was doing the best thing for my health, in the end my hormonal contraceptive took my health and left me infertile. My body no longer makes the hormones it so desperately needs and because of the blood clot I can never be on hormonal contraceptives of hormone therapy again. Nuva Ring took my ability to carry a child away from me and for that I will no longer be able to say that birth control revolutionized woman’s health.

Recent studies have shown that todays birth control pills may double a woman’s risk of blood clots, pulmonary embolism, and strokes. According to a WebMD article published in October 2011,

Being on the newest kinds of pills, which contain the progestin hormones drospirenone, desogestrel, or gestodene along with estrogen, doubled the risk again, making it six to seven times as high as women who weren’t using hormonal forms of birth control. Still, on average, about 10 out of 10,000 women taking newer kinds of birth control pills had venous thromboembolism in a year’s time. Although that’s a serious increase, it is still only half as high as the risk of blood clots seen in women who are pregnant or who have recently had a baby.

Per drugwatch.com, third and fourth-generation progestin have been linked to increased risk of deep vein thrombosis (DVT) (blood clots) and pulmonary embolism (PE) (blood clots in the lungs). In addition, the risk of heart attack and stroke is also increased. These complications can lead to death. Other popular contraceptives like Orthra Evra and Yaz/Yasmin also have been associated with blood clot risks. Yaz/Yasmin, which uses a fourth-generation progestin, has been associated with a 74 percent increase of developing blood clots.

Whoa that’s some really great information and is truly something women should know about. Over the past 5 years I have crisscrossed the country speaking to and meeting a lot of awesome ladies. Many have told me that they never knew their birth control carried a risk of blood clots and even in rare cases death. It hurts my soul that women do not know about the risk of blood clots, I too was blinded and had no clue that my birth control could cause blood clots, that was until I saw the fluorescent lights of the ER bay. In that sheer moment of disaster my passion was born, my mission became clear and I set out to take on the world. I lawyered up and found my voice.

My life will never be the same again. I no longer dream of looking at my own flesh and blood. Instead I dream of my “gotcha day” and know that somewhere in Asia there is a child waiting for me, somehow that makes this whole situation all right.

I ask you to do only one thing, the next time you insert the ring, pop the pill, or pony up for the shot, think of me and all of my survivor sisters. Just maybe in that moment you will remember to ask your doctor “so what are my risks, you know of possibly developing a blood clot?

To Learn More Please visit:

Drug Watch: http://www.drugwatch.com/nuvaring/

WebMD: http://www.webmd.com/sex/birth-control/news/20111026/newer-birth-control-pills-may-double-blood-clot-risk

http://www.npr.org/blogs/health/2014/02/09/273145327/nuvaring-contraceptive-settlement-leaves-women-weighing-risks

Cosmopolitan Magazine: http://www.cosmopolitan.com/celebrity/exclusive/blood-clots-young-women

Saint Louis Today: http://www.stltoday.com/business/local/fda-approved-nuvaring-despite-experts-safety-concerns/article_9994f863-f5cb-58d7-b33a-ce519e3dd486.html

Women’s Health Magazine: http://www.womenshealthmag.com/health/nuvaring

http://www.huffingtonpost.com/2013/12/18/nuvaring-blood-clots_n_4461429.html