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Will you help influence scientific research?

We need to hear from consumers like you as the American Heart Association (AHA) and the Patient-Centered Outcomes Research Institute (PCORI) partner together on the future of research. Your experience could lead to the next research study to improve heart disease and stroke treatment.

As an advocate we’ve asked you to speak out for increased funding for medical research and you’ve answered by contacting lawmakers and sharing your personal stories as survivors, caregivers, and loved ones touched by heart and stroke disease. Now we invite you to share your experience, the decisions made in determining your or your loved one’s treatment plans and the factors that influenced those decisions. If we better understand your experience it can help guide the research that will lead to better care tailored to the specific needs of patients.

If you’ve had a heart attack, suffered a stroke, or you know a loved one who has, your unique understanding could help guide research to solve un-met care challenges faced by individuals like you and improve heart and stroke treatment.

Here are the details:

  • We are focused on un-met challenges faced by patients and caregivers like you. 
  • To join this challenge, you’ll be asked to provide a written submission of your first-hand experience after a heart disease or stroke event.
  • The story and description of the concerns you faced and the decisions you made should be personal and not a general case.
  • A team of scientific professionals and patient representatives with expertise in heart disease and stroke will review your story. Learning more about issues and concerns important to your decision-making can help them improve experiences and outcomes for patients in the future.
  • If your submission is chosen, you could win $1,000 and possibly help shape the future of cardiovascular research.
  • All submissions must be received by June 8, 2016.

Please take this important challenge and share your insights. Your story matters. Take the challenge today!

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Share Your Story: James Young

James Young, Michigan

Winter season 2011, will forever be a reminiscence of what eventually became a diagnosis of Congestive Heart Failure.  There I was, after a snow storm, shoveling a path down the sidewalk when I began to cough up, what I thought to be phlegm. However, after taking further notice behind me, as I continued to shovel snow, it was actually a trail of blood.  I'm sure some would instantly go into shock, panic, and drive themselves to the nearest emergency room.  Not me.  Instead, I kept shoveling that snow and when done, I went inside, where it was warm, took off my winter coat and accessories, made some hot cocoa and enjoyed the next few hours of YouTube video surfing.  Big mistake.

As Spring chased away the bitter cold and introduced sunshine, not only was I still coughing up blood but now my couging had worsened to the level of coughing convulsions -- especially when I laid down at night.  I could barely hold a conversation with anyone because once I opened my mouth to formulate words, my coughing would interrupt that attempt.

Because of my high acidity diet that included a high beer consumption on a regular basis, I would develop gout in my feet.  These gout attacks would become more constant and frequent as time went on.  Gout tends to cause inflammation and swelling around the big toe and around the ankles of the feet.  Ultimately, my "Band-Aid" attempts of taking Motrin proved to be non-beneficial and my gout flare ups became immune to the medication which caused me to limp a lot and, at times, not even able to put on my shoes.  I would also have to walk with my grandfather's cane, just to get around.

As summer came into view, I would awakened in the mornings and vomit, on top of the lingering coughing attacks that, at this point, were so strong, I would have to brace myself to prevent falling to the floor that's how strong my coughs became.

In terms of my heart, its beating patterns were so rapid, it felt as if I ran a marathon - just sitting.  One could actually see my heart beating out of my chest.

One day, my sister, out of much concern, convinced me to go see my doctor.

My first visit, I was given a full physical and placed on high blood pressure medications. In addition, my doctor gave me some other prescription medications that no human could possibly decipher into the English language.

The medication did very little in bringing about any normalcy in my condition so my doctor thought to perform an EKG.  When those results came back I was strongly encouraged to return to the doctors office immediately for the news.

Congestive Heart Failure was the diagnosis.  CHF is a chronic condition in which the heart doesn't pump blood as well as it should.  Still not quite understanding what those three words truly meant, she then hit me with kidney disease, pneumonia on my lungs, fluid retention, and an enlarged heart. Possibly because of the heavy medication I was under, I took all the news rather lightly and unconcernedly.  I had no idea how badly of a state my health was in. 

After several additional visits to the doctors office, which became weekly visits, this one visit was the tipping point.  My mother drove me to this appointment because by this time, I couldn't drive myself, due to the heavy medication I was under.  When we reached the reception area, I found it very difficult to get settled in a chair, I began to feel warm and my nerves were all over the place.  I told my mother I was going to step outside to get some air.  Unbeknownst to me, my mother and my doctor found me standing in the center of the parking lot, head tilted to the sky, trying my best to inhale air. 

My doctor yelled at me to get to emergency immediately.  I complied and found my self admitted.  During my almost two week stay, I was told that at 40 years of age I was the youngest person in the unit.  The cardiologist informed me that if I had waited another week, I would have died.

Laying in the hospital, confined to bed as a fall risk, I had no other choice but to reflect on my life, what I had done to myself, and if given another chance, what I would do differently...if I had another chance in my immediate future to change.

After my initial release I found myself back in emergency due to the fluid retention in my legs not subsiding.  After being released seven days later I began having regular visits to a cardiologist which terrified me with his ending comments into his handheld voice recorder.  Those last words were "...Patient James Young...if we do  not see improvement in his condition within the next 30 days, we will proceed with defibrillator implementation.

Let's just say, I used the next 30 days as if they were my last!  I stopped drinking alcohol, sodas, fast foods, minimized my cigarette smoking significantly and remained faithful to the Lasix medication regiment.  In less than a month, I was under 200 lbs. (195 lbs.) from 270 lbs.  I had another physical as well as an EKG on that day.

The results were delivered in the mail and the first thing I see is a personally drawn happy face with the words "Good Job James" next to the happy face.  After reviewing the results with my doctor she made one last comment that stuck with me.  She said "you have become responsible."  She went on to add, "you have overcome a condition that thousands of individuals suffer from everyday and your job in this second wind in life, it is important to share your triumph and give others the same hope that they too can CHANGE!"

So here I am today, still no alcohol consumption, done with cigarettes, and soda is a distant memory.  I am now able to do upwards of 10 miles on the track.  And to top it all off, I'm not longer on prescription medication.

If I can lend any advice, I had to learn to love myself MORE than my bad habits.  I had to deal with what was eating me before I effectively tackled what I was eating and putting into my body that was literally killing me.  Now, life is GREAT!!

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House and Senate Committees take up CPR in Schools legislation

On April 28th, the House Education Committee heard testimony from a number of AHA advocates in support of HB 5160, introduced by Representative Thomas Hooker, that would ensure that all students in Michigan are trained in Hands-Only CPR before they graduate from high school. Representative Hooker testified that if all Michigan high school students learn basic CPR prior to graduation Michigan will gain an additional 100,000 CPR-trained lifesavers each year. Furthermore, four out of five cardiac arrests occur at home, so these students will most likely be saving the lives of their family members. Hands-Only CPR training can take as little as 30 minutes and can be easily incorporated into existing health curriculums. 

Parents shared heartbreaking stories of losing their children to cardiac arrest including Jocelyn Leonard, Randy Gillary and Kelly Warren, have chosen to become champions for change so that other parents don't lose their children.  Members of the EMS community: Jason Trojan and Dennis McMahon, testified on the importance of learning Hands-Only CPR due to the emergent time constraints.  There is a 10% reduction in brain function for every minute that a person is down from a cardiac arrest so the sooner CPR is administered the better the outcome for the patient. 

On May 3rd, the Senate Education Committee took up the CPR in Schools issue and, after hearing testimony from State Senator Tonya Schuitmaker and many of the advocates who spoke at the House hearing, voted 5-0 in favor of the bill!  We expect the House Education Committee to hold a vote in the near future.

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Ann Arbor proposes a Tobacco 21 ordinance

A potential ordinance change in Ann Arbor could make it harder for young people to buy cigarettes and other tobacco products.  Ann Arbor City Council Member Julie Grand is proposing to raise the legal age to purchase tobacco products in the city from 18 to 21.

While controversy on the proposal is expected, Grand is hopeful that if Ann Arbor takes the first step, then other municipalities in Washtenaw County, or the County as a whole, might follow and make a difference in reducing smoking rates and related health problems. Read Article

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AHA President Says: The Science is Clear on Sodium Reduction

Check this out! In a new video, the President of the AHA, Dr. Mark Creager, explains that the science behind sodium reduction is clear. He says that robust evidence has linked excess sodium intake with high blood pressure, which increases the risk of heart attack, stroke, and heart failure. And, he points out that you can do something about it: join AHA’s efforts to demand change in the amounts of sodium in our food supply.

“Nearly 80 percent of the sodium we eat comes from processed, prepackaged, and restaurant foods” says AHA president Dr. Mark Creager. The video shows the 6 foods that contribute the most salt to the American diet: breads & rolls, cold cuts and cured meats, pizza, poultry, soup, and sandwiches."

To see the video, head over to our Sodium Breakup blog!

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Share Your Story: Angela Kooi

Angela Kooi Michigan

On February 27, 2014, I was admitted to Borgess Hospital after being in and out of other hospitals for several weeks with heart-related symptoms (heart racing, dizzy spells, blurred vision, etc).  Several tests were run and despite a few elevated EKGs and occasions of catching a heart rate spike on the monitor, I was given the all clear and was ready to be sent back home. But, I know my body and knew this was not normal by any means. Thankfully the staff at Borgess hospital listened as I expressed my concerns, and finally, I was admitted.  Within 10 minutes of being admitted into my room and sending my family home I fainted.  My heart completely stopped - flat lined.  I woke to about 30 people in my room working frantically on me. They informed me that they thought they were going to have to “declare” me … what declare me dead?  As I spent the night in ICU I thought a lot.  I thought what if I hadn’t been persistent in explaining something wasn’t right and the need to stay that night in the hospital. What if I actually died? What would my husband and kids have done? What could I have done to avoid this?  The next morning I woke up to hear my husband and dad discussing options with the cardiologist.  The next thing I knew I was a 36-year-old with a pacemaker. I am alive, I am thankful and I am more knowledgeable. 

What did I learn?

Recognize the Symptoms. Get checked.  I had symptoms for several weeks and could have been more persistent with my doctor or gone directly to ER.  At times I made excuses for symptoms instead of addressing them.  I am young; there was no way I had heart issues, right? Wrong!  Symptoms of potential heart related issues include: heart palpitations, irregular or rapid heartbeats, discomfort in chest area, shortness of breath, sweating, nausea or light headedness.  Some of the symptoms may be vague.  Address symptoms with a doctor. It is common -- and often fatal -- to wait too long before getting help

Monitor/Document. Know your Body.  When going to the doctor I couldn’t always remember the symptoms from the days prior or if there was something that triggered my heart palpitations.  Having a log of my blood pressure/heart rate, along with the activity during those times and how I felt during those times was helpful when talking to doctors.  Telling the doctors that I know my body and that what I was going through was not right was critical in getting the help needed.

Find an outlet/make time for yourself.  Managing multiple priorities such as work, kids and home can undoubtedly be stressful.  I tried all the standard stress-relieving activities such as deep breathing, walking and yoga, but none of these seemed to work for me.  Find what works for you or brings you peace.  I learned that my “me” time or outlet was crafting, which gives me a sense of peace.

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CPR Lobby Day was a Huge Success!

On March 23, the Michigan advocacy team hosted a very successful CPR in Schools Lobby Day in Lansing.  Over 70 advocates and AHA staff from across the state were in attendance and made over 90 contacts with their lawmakers.  Attendees participated in a short training session regarding the current status of the CPR in Schools legislation which included key messages to share with their lawmakers and how to talk to lawmakers.  Participants also took part in a fun Hands-Only CPR training led by AHA staffer, Cindie DeWolf.  In addition, attendees were greeted and encouraged by legislative sponsors, Senator Tonya Schuitmaker (SB 647) and Representative Thomas Hooker (HB 5160) who spoke briefly about the reasons for introducing the legislation.

Both bills require that Hands-Only CPR training must be taken prior to graduation and can be offered anywhere between grades 7-12 and can be inserted into any part of the school curriculum.  The training does not have to be taught by a certified instructor as long as it does not result in a "certification card." The training must also provide the opportunity for practice of psycho-motor skills and encourages partnerships with local emergency responder groups and training centers. 

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The healthy difference a month can make

March is Nutrition Month, and a perfect time to get more involved with the AHA’s ongoing efforts to promote science-based food and nutrition programs that help reduce cardiovascular disease and stroke.

Every day, we’re seeing new initiatives: to make fruits and vegetables more affordable; to reduce the number of sugar-sweetened beverages that our kids are drinking; and of course, to ensure students are getting the healthiest school meals possible, all with the same goal: to help families across the country lead the healthiest lives they possibly can.

It’s also a great opportunity to lower your sodium intake. The average American consumes more than 3,400 milligrams of sodium per day – more than twice the AHA-recommended amount. Excessive sodium consumption has been shown to lead to elevated blood pressure, which increases the risk of heart disease and stroke. Visit www.heart.org/sodium for tips on to lower your intake and to get heart-healthy recipes.

However you choose to celebrate, Nutrition Month gives us all the chance to take control of our diets; to recommit to eating fresh, healthy foods; and to remember all month long that you’re the cure.

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Join us for our CPR in Schools Lobby Day!

Registration for our official CPR in Schools Lobby Day event is now open!   

Please visit https://www.surveymonkey.com/r/FJNSCM7  to RSVP  

Event Details

Date: Wednesday, March 23rd

Time: Registration opens at 8:00 am.  Event begins at 9:00 am and ends at 1:00 pm.

Location: The Radisson Hotel, 111 North Grand Avenue, Lansing, MI 48933  

Join the American Heart Association as we work to ensure that all students in Michigan are trained in Hands-Only CPR before they graduate from high school!   Our event will include an overview of the legislation, a demonstration of Hands-Only CPR, survivor stories, and a possible guest speaker.  We'll also answer any questions you have before you visit the offices of your State Senator and State Representative to ask for their support of the bills.  We'll regroup back at the hotel for a heart-healthy lunch and post-meeting activities.  

Remember to sign up using the link at https://www.surveymonkey.com/r/FJNSCM7   Please ask your friends, family and colleagues to join you as well!  If you have any questions or have difficulty in registering, please email me at jason.harder@heart.org

Hope to see you later this month!

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Share Your Story: Melissa Johnson

Melissa Johnson - Michigan

I was 37 when I was told that I had been born with a congenital heart defect, a Bicuspid Aortic Valve while at the hospital after passing out in my office at work. I was introduced to a cardiologist the next day who told me that I would have to have it replaced earlier than expected. I than began having yearly appointments to monitor my heart until August 2013. I began to notice that I was having shortness of breath simply by walking up stairs, sometimes having to stop to “settle” my heart from racing. I also noticed that the tightness in my chest was more frequent than before. My fiancé Steve was very concerned and convinced me that I needed to call my cardiologist. I had another echocardiogram and was told that I needed replacement surgery as soon as possible as my heart was showing signs of enlargement. He was very honest in saying that it was really important that I did not “brush” my symptoms aside. An aortic valve replacement operation was scheduled but before I would make it to surgery, a tragic event will cause a delay.

On September 8, 2013, without knowledge of any major heart issues, my fiancé, Steve Dunning passed away from a massive heart attack. He had been taking high blood pressure medication, had his blood pressure under control and was two month post his yearly physical. He was playing basketball at a local park with a group of young people that he had been coaching and/or teaching for years. Although physicians believe he passed away before he fell to the ground, the police told me that out of all the people that were present, no one knew how to perform CPR, they just knelt next to him and waited….for 8 minutes until emergency responders arrived. Daily, I am haunted by what could have been done as well as the guilt that I know a few of these young community members have because they watched who they referred to as “Coach” and  “Superman” lay helpless and had no idea how to help. About six months later, I recalled a memory of when I came to the park and watched a team of professionals attempt to save Steve’s life, hearing “I’m sorry, I didn’t know what to do”. A 47-year old father, granddaddy, coach, educator, friend and the love of my life was taken too soon.  

It wasn’t until July 2015 that I made the decision to have open heart surgery. I simply was not able to handle even walking into a cardiologist’s office since Steve’s death. It was a life changing decision to save my own life. After surgery, I was struggling to recover despite the fact that I was 44 years old and in good physical shape. The symptoms seemed to continue. On the second anniversary of Steve’s passing, I was told by my heart team that I had a patient-prosthetic mismatch due to my aortic root being too small and would need to have yet another surgery. This time, I will have to have an Aortic Homograft. A homograft is a procedure where the patient's organ is replaced using a donor's organ. In terms of aortic homograft, the patient's aorta is replaced with a donor's aorta. This next surgery provides me yet another chance, because someone else didn’t get one.

It hit me. I realized that if there was ever a time to dare to make a difference, my time was now. For me and for the legacy of Steve.  I have to share my story of great love lost and great love survived to educate others. Never did I imagine my journey would take me from education of congenital heart defects, to the importance of living a heart healthy lifestyle and today the passion for driving the necessity for CPR to be taught in our school systems. More CPR trained individuals in our communities, more celebrations of life. Bystander CPR, provided immediately after sudden cardiac arrest can double or triple a victim’s chance of survival. Five minutes is the difference between life and death. If no CPR is provided or no defibrillation occurs within 3 to 5 minutes, the chances of survival drop. Join me in making sure that we can save the life of someone's Steve.

 

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