Sunday, December 7, 2014

Gender Inequities in Cardiac Care-You Must Advocate for Yourself

I started this blog to work through the why of my heart attack at 42.  I started it just for me and in the beginning, I only shared it with a very small group of longtime dear friends because they wanted updates on how I was doing.   Surprisingly there is much emotion surrounding a cardiac event.  Blogging is a great way to work through this.  It also has a funny way of connecting you to others that are walking the same path as you. I found great relief when I found the blogs of Jen Thorson (My Life In Red) and Carolyn Thomas (Heart Sisters). Just knowing I wasn't alone and other women had experienced this and lived was an amazing truth to find. Still, it is a great surprise to me that people actually find my blog and read it. That I have the same impact on women that Jen and Carolyn had on me makes me smile.  I know I do because I often receive emails from women reaching out to me in an attempt to find the why in their own cardiac events.  It makes being out on the web worth it.

Not long ago, I received a particularly striking email from a woman in Georgia who had a heart attack over the summer.  She is older than me by almost 20 years and her experience really infuriated me.  She found Jen's blog and that was the first she knew of cardiac rehab.  She also said she feels  that her doctor dismisses her because she is older and therefore not that important.  She feels young and she was very put off by this treatment.  I have been sitting on this and stewing over it not sure what to write.  I find it unconscionable that in this day and age of modern medicine and technology that this kind of gender and age inequity exists.  

I was referred to cardiac rehab however my insurance would not cover it so I only went a few times. I found this to be so odd because my bill from my STEMI was about $250,000.00  That they would cover this and not the recovery and prevention of the next one leaves me scratching my head.  I work managing medical billing so I am not sure why this was so surprising to me but it was.  With all of the studies surrounding the benefits of cardiac rehab it just seems so ridiculous.

According to The American College of Cardiology, "Women with coronary artery disease who completed a 12-week cardiac rehabilitation program were two-thirds less likely to die compared to those who were not referred to the program. In addition, the mortality benefit derived from this evidence-based program appears to be much more striking in women than men with the same condition, yet referrals and attendance among women fall short, according to research being presented at the American College of Cardiology's 62nd Annual Scientific Session."( Rehab Associated with Reduced Risk of Death in Women with CAD)

The World Heart Federation states, "Despite the fact that half of the 17.3 million deaths from cardiovascular disease (CVD) each year happen in females , women are still discriminated against when it comes to the management and treatment of this disease. Women are more likely than men to be under-diagnosed and under-treated, mostly because the presentation, progression and outcomes of the disease are different and less understood in women than in men.  Although there has been progress in raising awareness about CVD in women and studying the specifics of the disease, as well as in adapting CVD treatment and care for women, the gap is still too wide." (HEART TO HEART: EXPERTS CALL FOR AN END TO GENDER BIAS IN CARDIOVASCULAR DISEASE)

A study published in The European Journal of Preventative Cardiology concludes, "CR referral remains low for all patients, but is significantly lower for women than men. Evidence-based interventions to increase referral for all patients, including women, need to be instituted. It is time to ensure broader implementation of these strategies." (Sex bias in referral of women to outpatient cardiac rehabilitation? A meta-analysis.)

According to the American Heart Association, "There is ample evidence on the proven benefits of CR/SPPs on CHD risk factors and exercise capacity.3 Moreover, recent data demonstrate that participation in CR/SPP is associated with a reduction in mortality after percutaneous coronary interventions4 and with a dose-dependent reduction in both mortality and recurrent MI for those patients with stable angina or patients after MI or coronary artery bypass surgery.5 Given the significant benefits that CR/SPPs bring to CVD prevention, every recent major evidence-based guideline from the American Heart Association (AHA) and the American College of Cardiology Foundation (ACCF) about the management and prevention of CHD provides a Class I–level recommendation (ie, procedure/treatment should be performed/administered) for referral to a CR/SPP6 for those patients with recent MI or acute coronary syndrome, chronic stable angina, heart failure, or after coronary artery bypass surgery or percutaneous coronary intervention. CR/SPPs are also indicated for those patients after valve surgery or cardiac transplantation.6
Despite the clear benefits of cardiac rehabilitation, the use of such programs remains dismally low. Of eligible patients, only 14% to 35% of heart attack survivors7,8 and ≈31% of patients after coronary bypass grafting surgery7 participate in a CR/SPP. Lack of accessibility to program sites and lack of insurance coverage contribute to the vast underuse of cardiac rehabilitation services.3 Another major factor is a low patient referral rate, particularly of women, older adults, and ethnic minorities, to CR/SPP services.3 Accordingly, patients in these latter groups are the least likely to participate in cardiac rehabilitation.7 This is especially noteworthy because women and minorities are significantly more likely to die within 5 years after a first MI compared with white male patients.1
The remarkably wide treatment gap between scientific evidence of the benefits of cardiac rehabilitation and clinical implementation of rehabilitation programs is unacceptable." (http://circ.ahajournals.org/content/124/25/2951.full)

Women should find it outrageous that despite the research by major well respected outlets they still receive sub-par treatment when compared to men. In my estimation, the only way to change this is for women to take their healthcare seriously and advocate on behalf of themselves. I told the woman that emailed me from Georgia to go to a different cardiologist.  Keep going to a different doctor until you find the one that will take you seriously and will provide you the level of care that you deserve.  I am on my 4th cardiologist and have finally found the one.

I was fortunate that in my situation, I called 911, had a cardiac team waiting on me when I arrived at the hospital, received very quick treatment and was referred to cardiac rehab.  I had no idea that this was not the norm until I started meeting other women who were sent home from the hospital mid heart attack.  They were sent home because they had the flu, they had pulled a back muscle, were having an asthma attack or had indigestion--anything but a heart attack. Once they finally received proper cardiac care, they aren't referred to cardiac rehab. Unimaginable!

 As a woman, you must know that heart disease is your number one killer.  You must make yourself aware of the signs and symptoms of heart attack and stroke.  You must pay attention and you must advocate for yourself when you know something isn't right. Your life may depend on it.



Thursday, November 27, 2014

#BeingThankfulIsWhy



I have a list of things I am thankful for everyday.  On the top of that list is life.  Everyday, I reflect and I see things through a perspective that most people don't.  On this Thanksgiving, I have a long list.  Holidays magnify the feelings and intensify the thankfulness.

I am thankful for a core group of folks that impact my life daily and are my biggest cheerleaders!  I have celebrated another heart anniversary with them and I am ever so thankful for that!
 #BethIsWhy
 #DebIsWhy
 #MonicaIsWhy
 #TeriIsWhy
 #HighSchoolandJrHighFriendsAreWhy
#StephIsWhy

I have celebrated another birthday this year and I am thankful for it--my 46th if anyone is counting!

#BirthdaysAreWhy
I have struggled with my fitness journey and weight for many years but met a dynamic young woman who is a huge cheerleader for many including me.  I am thankful this year that she is in my life:

#AmandaIsWhy

I am thankful for my family:
 #FamilyIsWhy
 #DaughtersAreWhy
 #FinallyHomeFromThePeaceCorpsIsWhy
 #KidsAndGrandkidsAreWhy

I am thankful for the American Heart Association Kansas City.  They have afforded me great opportunities to educate and advocate.  They have given me the opportunity to meet incredible women!  Laura, Ciara and Dawn--thank you!
 #HeartSistersAreWhy
#JulieIsWhy
The American Heart and American Stroke Association asks you this year "What is your why?"  I challenge you to analyze what you are thankful for and pick your why--leave it in the comments.  
Above all else, I have chosen to do what many women have a hard time doing and this year I am thankful that in my busy life I can make myself a priority because above all else I am thankful to say:

#IAmWhy
#HappyThanksgiving!



Tuesday, October 28, 2014

World Stroke Day 2014

World Stroke Day 2014 is tomorrow October 29.  According to the American Stroke Association, stroke is a disease that affects the arteries leading to and within the brain. It is the No. 4 cause of death and a leading cause of disability in the United States. A stroke occurs when a blood vessel that carries oxygen and nutrients to the brain is either blocked by a clot or bursts (or ruptures). When that happens, part of the brain cannot get the blood (and oxygen) it needs, so it and brain cells die.
About 795,000 Americans each year suffer a new or recurrent stroke. That means, on average, a stroke occurs every 40 seconds. Stroke kills more than 137,000 people a year. That's about 1 of every 18 deaths.On average, every 4 minutes someone dies of stroke. About 40 percent of stroke deaths occur in males, and 60 percent in females. The 2006 stroke death rates per 100,000 population for specific groups were 41.7 for white males, 41.1 for white females, 67.7 for black males and 57.0 for black females. Americans paid about $73.7 billion in 2010 for stroke-related medical costs and disability.  The American Stroke Association offers Stroke Fact Sheets and when you check out the American Stroke Association, take the Pledge to End Stroke.




 You can also learn how to spot a stroke FAST:



Through my volunteer work for the American Heart Association in Kansas City, I have had the great pleasure of getting to know Teri Ackerson.  I profiled her story here last February.  Teri was the primary stroke coordinator at a local hospital and an RN when a twist of fate found her having her own stroke Memorial Day of 2013.  Only because her son knew the signs of a stroke was she able to get the quick treatment that she needed.  Read the original post of Teri's story in her own words here. 

Through Teri, I have started following a group called National Orange Popsicle Week. According to their website, their mission is to build and support the community of young stroke survivors, and their loved ones, by raising awareness and funds, while contributing to ongoing research of stroke in young people.  Their vision is to reverse the assumption that stroke only affects the elderly and to build flourishing community support groups of young stroke survivors. They consider young stroke survivors to be 45 and under.  Please take a minute to learn how to take action for young stroke survivors here.  Raising awareness is half the battle!

In the Twitter world, I became connected with Ryley (@ryley_strong).  He is a 16 year old young man from Arkansas who suffered massive stroke.  He shares his story on his community Facebook page Strength for Ryley Williams.  His community Facebook page shares:  Monday, July 8, 2013 Ryley had just begun warm up exercises for off season BHS sophomore football practice when he collapsed. He was rushed by ambulance to the local ER. Preliminary tests did not show a cause for the paralysis and intermittent loss of consciousness. It was quickly recognized that he would need more specialized care, and was taken to Arkansas Children's Hospital in Little Rock, AR by helicopter. Upon arrival he was quickly taken in for an MRI that revealed massive strokes that effected a large part of the left side of his brain, and causing the paralysis of the right side of his body. The challenge was then to find the source of the blood clots that caused the strokes. Our answer came within 48 hours of arrival at ACH, when Ryley was rushed into emergency surgery to remove a portion of his skull to relieve the pressure from the swelling caused by the strokes. Immediately following that surgery, a transesophageal echocardiogram was performed, and that revealed endocarditis. A bacterial infection in his blood stream (to this day we still have NO idea how he got this infection) caused hair like strands to build up on several of his heart valves. Essentially the strands broke loose and threw embolisms into his blood stream straight up to his brain. We are now 7 months post stroke and still trying recapture his motor and language skills. Ryley has quickly become somewhat of a medical miracle with his determination, tenacity, and physical health to push through adversity and expectations. As a family we strongly feel that it was a miracle of our Lord and Savior, Jesus Christ. It has been with his many blessings and constant presence that we have be able to stand by Ryley and continue to encourage him. This page was created to show support to Ryley, and update our friends, family and community.

The thought that stroke is only something that affects the elderly is such a misconception for masses of people.  Just as with heart disease, it is such a battle to fight this misconception.  I hope you will take time on October 29, World Stroke Day to make yourself familiar with the signs of stroke and remember that it is the No. 4 cause of death and a leading cause of disability in the United States.

Monday, October 13, 2014

Happy Heart Anniversary!


Today is the day--my heart anniversary.  Three years ago tonight I was in complete shock as a doctor I had never met was looking at me telling me I was in the midst of a STEMI.  I really just wanted to tell him he was full of shit except the blood pressure reading I was looking at on the machine I was hooked up to read 200/120 so I figured he really was telling me the truth.

I started my day at 4 am so I could get a jump start before anyone else got to work today.  I was pondering what to post about this day and so many things came to mind.  I chose just to keep it simple and I posted this on Facebook this morning:





  In response, my friend Jamie posted this back:



This is it.  What he wrote makes what happened to me at 42 and the role I have settled into all worth it.  I put it out there just for this reason.  If one person makes a change then this is the reason. I never knew something like this would suit me.  It turns out it does!  God chose this role of survivor and educator because he knew it would suit me.   Before this, I never really volunteered. The volunteer work with the American Heart Association suits me as well. I would have never realized this if not for the heart attack. How amazing it feels to take such a monumental negative and turn it into a monumental positive.

A huge thank you to all of you that have hung in with me.  Thank you to all of you that put on red for National Wear Red for Women day and text, email or post pictures to me on Facebook.  You have no idea how much that means to me.  Thank you to those of you that read my posts and literally take it to heart and go visit your doctors.  Thank you to the American Heart Association Kansas City for all of the opportunity you provide me to go out into our community and educate about heart disease.  Thank you also for the opportunity to meet and forge such fabulous friendships with the amazing, amazing other survivors and advocates that I so cherish.

So, to help me celebrate my third heart anniversary, go visit your doctor and get your heart checked out!

One more thing you can do, help us root on our Royals!  It is a feel good, good for your heart magical baseball season in our town!  Go Royals!  #TaketheCrown #BeRoyalKC