Lesson #1 - pay attention here class. There may be a quiz...

I had been experiencing an occasional backache, nausea, and heaviness in my chest off and on for several weeks. The mild discomfort included a tiny cough and shortness of breath. (Later, I would discover that annoying little chronic gasp was my heart's way of recharging itself.)

I ignored the symptoms and continued with my busy schedule which included a heavy work schedule and a full class load at the University of Michigan. One afternoon I took a very rare day off from work and was frantically finishing major research papers for my finals. This time I felt an unusually sharp tightness in my back and chest. For a tiny moment I considered it might be a heart attack. But I didn't have one scheduled in my day planner, and frankly, I just didn't have the time... It wasn't a convenient day to die.

I sat on the sofa and waited for the intense wave of pain and nausea to pass. My skin felt clammy. The pressure increased. It felt as though a huge wall of cement had fallen on my chest. I tried to convince myself that I had food poisoning and ran through a menu of the foods that I had eaten in the last 24 hours that could have possibly caused me to become ill. "Lemme see," I said out loud. Nope. Not food poisoning. I hadn't had anything to eat except Mac 'n Cheese the day before for lunch.

Heart attack? Nope. Not me! No one in my family had ever had serious heart problems and I certainly wasn't going to start the tradition today!

The certainty that I was going to loose consciousness washed over me. I looked down at the floor and thought that I had better get off the sofa quickly and lay down ."I don't want to fall off this couch and break my nose," I declared out loud to my cat. I didn't want to bust up my face and look ugly in my coffin.

I laid down on the floor on my left side and rested my head on my arm. Suddenly I knew I was going to vomit! I crawled on my hands and knees into the bathroom and emptied the contents of my intestines from my tummy to my toes. As soon as my stomach was empty the pain subsided and I convinced myself it was just a little flu. Some sort of inconvenient bug.

I had  more of these events within the next few weeks. Like aftershocks following a major earthquake they intensified. Never once did I consider the need to call 9-1-1 or to call and make a doctor appointment.

Finally, one Thursday afternoon, a coworker saw me as I leaned against the wall at work, ashen and shaken. He asked what I was doing and I pointed to the bathroom door and the exit from the building. I said, "I am either going in there and throw up or out there and pass out!" He questioned me and then declared that I had just described eight of the seven symptoms of a heart attack. He phoned his cardiologist and made an appointment for me the following morning.

The next day the cardiologist suggested a heart catheterization and scheduled one for the first thing the following Monday morning. It's no big deal, I thought. Nothing's wrong. Just a little indigestion and a whole lotta stress. He prescribed Xanax and Omeprazole and the suggestion that I might want to "try and take it easy."

On Monday, July 1, 2002 I joined him in the cath lab. It's no big deal he told me. I do 60 to 100 of these a day he said. It's nothing to sweat. In the groin and out again he insisted...

And the rest, as they say, is history. I flat lined three times during the procedure. I heard him tell me to look up over my head on the screen where I could watch what he was doing. He was talking softly and encouraging me to watch the miracle of medicine for myself. I heard him say that I have the heart of a race horse and that I could run the Kentucky derby and win. "We are going into the right side now," he told me. And then everything went black...

WomenHeart's Congressional briefing on heart failure in women held on April 28th, 2015

Key recommendations to improve outcomes for women living with heart failure

As part of WomenHeart: The National Coalition for Women with Heart Disease’s national patient education campaign on heart failure and women, the organization has just released findings from its first national research on heart failure and women. Heart failure is the leading cause of hospitalizations in women over the age of 65¹, and women account for 50 percent of all heart failure-related hospital admissions² yet only 25 percent of women are involved in heart failure research studies.³ Women with heart failure tend to experience a greater burden of symptoms, such as depression, and a reduced quality of life, compared to men.

In November 2014, WomenHeart introduced a national patient survey designed to gain a better understanding of how women are managing their heart failure. Additionally, between November 2014 and April 2015, WomenHeart also conducted two telephone focus groups and two in-person patient roundtable discussions composed of women heart failure patients to learn how heart failure affects women’s health and their lives.

Research participants identified key areas where improvements are needed to help them manage their heart failure:

·         Reduce misdiagnoses of heart failure in women, which are preventing or delaying proper treatment

·         Address mental health issues associated with heart failure

·         Enhance patient education for women heart failure patients

·         Remove barriers to cardiac rehabilitation

·         Improve access to support groups for women heart failure patients

·         Improve two-way doctor-patient communication

·         Expand access to insurance coverage

·         Provide information to women heart failure patients on how they can get involved in heart health awareness activities

After reviewing the results of the heart failure survey, patient roundtables, and patient focus groups, WomenHeart conducted a Key Opinion Leaders work session to come up with recommendations to improve diagnosis, care and quality of life of women heart failure patients. The following top recommendations came out of the Key Opinion Leaders work session:

·         Physicians and other health care providers should receive continuing education that includes sex and age sensitivity as well as cultural competency, listening skills, and a holistic approach, so they can better address the specific medical needs of women heart failure patients – including their unique mental health needs.

·         Medical school and residency training should be modified to build communication skills to improve doctor-patient communication.

·         Health care providers should encourage their women heart failure patients to participate in pre-clinical and clinical research studies to ensure that medicines and devices used to treat women with heart failure have been tested in women.

·         Physicians and other health care providers should consistently talk to their women heart failure patients about the value of cardiac rehabilitation in improving patient outcomes, reducing hospital readmission rates, and lowering health care costs.

“We want to use these important research findings on women and heart failure as a platform to work with our partners in the public and private sectors to increase awareness about heart failure in women and improve the diagnosis and care of all women living with this life-threatening condition,” said Mary McGowan, Chief Executive Officer, WomenHeart. “By working together, we can make a difference in the lives of women living with heart failure and improve outcomes,” she added. 

Learn more about WomenHeart’s national campaign on heart failure and women at:  http://www.womenheart.org/?page=SupportCHF.

Special thanks to St. Jude Medical Foundation and Novartis Pharmaceuticals Corporation for supporting the campaign through grants, and to Amgen for sponsoring the campaign.

Resources

¹Harvard Women’s Health Watch newsletter, Harvard Health Publications, Harvard medical School, September 2008. Available online at: http://www.health.harvard.edu/newsletters/Harvard_Womens_Health_Watch/2008/September/Heart_failure_in_women

²Cleveland Clinic Heart Failure in Women web page. Updated 2014. Available at: https://my.clevelandclinic.org/services/heart/disorders/heart-failure-what-is/heart-failure-women

³Harvard Women’s Health Watch newsletter, Harvard Health Publications, Harvard medical School, September 2008. Available online at: http://www.health.harvard.edu/newsletters/Harvard_Womens_Health_Watch/2008/September/Heart_failure_in_women  

Medicaid Expansion in Michigan Senate Hearing July 3, 2013

I was invited to the Michigan Senate Hearing on July 3, 2013 to tell my heart story in order to lobby for Medicaid Expansion. Less than ten minutes after opening the session Republican Senator Randy Richardville chose not to take testimony and adjourned the proceedings. As a result, I was unable to testify myself. However, Senator Glenn S. Anderson read my statement on my behalf. I have included it here. 

Senator Anderson’s statement is as follows: 

"Moving this legislation now will benefit 470,000 uninsured Michigan residents, but you don’t have to take my word for it. There are countless stories of people we represent—and you represent across the aisle—who are depending on this legislation to survive and avoid exorbitant debt in medical costs; people like Joe Ann Burgett fromSt. Clair County—not from my county, but from someone across the aisle—who is here today in the north Gallery. Joe Ann is a national spokeswoman for WomenHeart and a support network coordinator, as well as a You’re the Cure advocate for the American Heart Association. During a heart catheter procedure on July 1, 2002, Ms. Burgett flat lined three times. In 2008, she lost her health care coverage when she left her employment. Due to her lack of health insurance, she went over 18 months without medication. She did not qualify for Medicaid because she was receiving minimum unemployment benefits. She knew her health was gradually deteriorating so, in her words, she “swallowed her pride” and went to the People’s Clinic. It was necessary for her to go there at 12:30 a.m. or 1:00 a.m. and wait in line until the clinic opened the next morning at 7:30 a.m. It was March and it was below freezing. Ms. Burgett said that if you were not the first 10 to 15 people to arrive, you were sent away without seeing anyone. After waiting in line and then having her paperwork processed, an evaluation by a social worker, and her vital signs taken by a nurse, she was still waiting to see the doctor at 10:00 a.m. As a result of the nurse’s evaluation of Ms. Burgett’s vitals, she was informed by the doctor that he had ordered an ambulance to take her to St. Joseph Mercy Hospital emergency room. The doctor told her she was either having a heart attack or a stroke. Despite her dire situation, Ms. Burgett said she was reluctant to take an ambulance and even requested driving herself to the hospital due to the high costs and her lack of insurance. After being released from the hospital with proper medication, Ms. Burgett was required to visit the People’s Clinic monthly to refill her medications. According to Ms. Burgett, “I am just one of thousands of women in America who die or are in near-death situations and have to go to the emergency room for care because we cannot afford to see a cardiologist on a regular basis or purchase medications that are necessary to save our lives. One American dies of cardiovascular disease every 40 seconds, and takes the lives of more than 2,150 Americans each day.” How many of those deaths could be prevented by adequate health care, proper diagnosis, and treatment? It is absolutely vital that we take the time to return and resolve these issues with this Medicaid expansion crisis. There is not 40 seconds to waste. While Joe Ann’s story is harrowing, there are 470,000 more like it that are going to continue until we pass Medicaid expansion in Michigan. Simply put, we need to get this done and as soon as possible, and adjourning now only delays that. We have the votes to do this today, and that’s why I voted against the adjournment of session. We have a quorum, and we have the Gallery filled with supporters today. People like Joe Ann Burgett’s lives hang in the balance, and we should not delay on this important legislation any further. Today, the Michigan Senate let Joe Ann Burgett and let the people of Michigan down."

Here is the link to the entire journal for the session:http://www.legislature.mi.gov/(S(mrypkjmr2s513rir35z30455))/documents/2013-2014/Journal/Senate/pdf/2013-SJ-07-03-061.pdf   Page 1288 JOURN, 2013] [No. 61 AL OF THE SENATE [July 3 
Posted 7/12/2013

2014 Volunteer Recognition Award

Presented to 

Joe Ann Burgett

in appreciation pf your service, courage, commitment

& belief in our life-saving mission

American Heart Association

American Stroke Association

***This was awarded for my advocacy efforts for Medicaid Expansion in Michigan in July, 2013

"If you don't have any charity in your heart you have the worse kind of heart trouble." ~ Bob Hope

Seated: Ruby Foster

Back Row Left to Right: Sharon Mallon, Senator Debbie Stabenow, Joe Ann Burgett

We Need Cures Not Cuts!

I am a WomenHeart Champion and National Spokeswoman for women living and thriving with heart disease as well as a  You're the Cure Advocate and Hero for the American Heart Association. The one lesson I learned from my death (I flat-lined three times On July 1, 2002) is that each of us is just one tiny heart beat this side of eternity. One American dies every 40 seconds from a heart attack. We do not have 40 seconds to waste arguing about the political issues regarding health research. The photo below was taken in April, 2013 at the Health Rally in Washington, DC.

Left to Right: Janine Krolikowski, Joe Ann Burgett and Yuki Nicolette

“There is always something to do. There are hungry people to feed, naked people to clothe, sick people to comfort and make well. And while I don't expect you to save the world I do think it's not asking too much for you to love those with whom you sleep, share the happiness of those whom you call friend, engage those among you who are visionary and remove from your life those who offer you depression, despair and disrespect.” - Nikki Giovanni quotes (African-American Poet, b.1943

It was an honor to present the prestigious Wenger Award to Senator Debbie Stabenow for her tireless and extensive work on The Heart for Women Act. Left to Right: Me, Senator Debbie Stabenow, Dr. Nanette Wenger, Sharon Mallon, Lisa Tate and Debbie Loveless.

13th ANNUAL WENGER AWARDS HONORS THOSE MAKING EXTRAORDINARY CONTRIBUTIONS TO WOMEN’S HEART HEALTH

Senator Debbie Stabenow (MI) among honorees

Washington, DC, April 8, 2013 – Three individuals and one organization will be honored tonight for their leadership in advancing women’s heart health at the 13th annual Wenger Awards, at the Ronald Reagan Building Atrium in Washington, DC. WomenHeart: The National Coalition for Women with Heart Disease hosts the Wenger Awards annually in recognition of those who have set a precedent in prevention, treatment and care of heart disease in women. Heart disease remains the leading cause of death in women, with 1 in 3 women dying from heart disease every year.
The Wenger Awards are named for Nanette Kass Wenger, MD, pioneer in women’s cardiovascular disease. The Wenger Awards is the only national recognition for those who are making extraordinary contributions to women’s heart health. This year’s honorees are:
The Honorable Debbie Stabenow (MI) for Excellence in Public Policy. Senator Stabenow is the first woman to be elected to the U.S Senate from the state of Michigan, and is currently serving her third term. Improving the lives of women and their families has been a priority throughout Senator Stabenow’s career on the local, state and national stage.
Senator Stabenow was the original sponsor of the HEART for Women Act, which she introduced in three sessions of Congress. She doggedly continued her efforts to address the lack of sex specific data which has been identified by the Institute of Medicine, Government Accounting Office, advocates, clinicians and women throughout the country as a serious problem.
Thanks to the tireless efforts of Senator Stabenow and her staff, a critical provision from HEART for Women addressing the availability of sex specific data for drug and device clinical trials was included in the Food and Drug Administration Safety and Innovation Act signed by President Obama last July.

Senator Stabenow’s achievement ensures that sex-specific data will become publicly available on a more consistent and reliable basis, thereby improving the lives of women living with heart disease and give patients and providers confidence in their treatment choices.

Who turned out the lights?

The cardiologist was speaking softly from some far off distant land. Calmly he reassured me that all was in better than excellent working order. "You have an extremely strong heart. You could run the Kentucky Derby and win. In fact, I don't know why we are even bothering to do this procedure," he said. "You can look right there in that monitor and see for yourself! We are now done with the left side and we are entering your right ..." That was the last thing I heard him say. My heart stopped completely when he entered the artery with the dye and probe. Heart attack, myocardial infarction, sudden cardiac death, flat-line, deader than a doornail! It doesn't really matter what you say or how you say it - when your heart stops beating YOU ARE DEAD. Later they would ask me what I remembered. I would recall the intense crushing pain and burning in my chest. I choked to breathe. My first conscious thought was "Oh my God, have I been SHOT?" It was a searing pain like nothing I have ever experienced before or since. They were rushing around me rubbing salve on my chest, torso, and back where my flesh had been scorched from the paddles.  "We had to paddle you three times to get your heart started again," I heard someone say, "And there is some second degree burning here on your chest and your sides so we are applying some salve to help you with the pain." I looked up at the attending nurse and said, "I swear that I can smell burning bacon." "Who threw me up against the wall?" I asked weakly. I heard them laugh halfheartedly. The bottom of my feet throbbed and my ankles ached. Someone explained that when they 'defib' you the electricity exits out the bottom of your feet. "They will probably hurt for a few days," they assured me. That was an understatement. It would be nearly six months before I could step down on my heels without feeling pain. I could hear them talking to me but what they were saying seemed foggy and far away. I was remembering what had REALLY happened when I was 'out of the room' while they were busy trying to bring me back. Since then a few people have jokingly asked me if I was really 'in the light' or if I saw Elvis or Lady Di. Later on when I asked my doctor why I didn't see angels he told me that it was because he didn't let me "get that dead". The truth of it all is this - It was if I was given the gift of seeing everyone I have ever loved. One at a time I 'viewed' my relationships... With Bill (my significant other at the time), each of my children, my grandchildren, my siblings, my parents, my dearest and closest friends... The cast of characters appeared randomly - the living and those that have gone on ahead. It was a slide show filled with powerful points of light. It was as if one at a time they stood there with me and we 'spoke' of our love for each other. I could actually feel the sorrow and pain that they were feeling at the loss of me leaving them. As each person appeared before me I thought of all of the hurts we had caused each other, the times we neglected each other, of the many, many things we had said that we shouldn't have and the many more things we should have expressed but had left unsaid. The silent sound of the 'I love yous' we left unspoken roared through my heart. I thought about my deep and abiding love for each of them, my gratitude for the gift of their love and their lives in my life, the many times they lifted me up and the joys we shared. I could feel the depth of my deep, deep love for each of them. Sorrow flooded my soul with regret that I didn't tell each and every one of them how very much they mean to me when I had the chance. I wept at the sadness and sorrow we have shared and longed to be the wonderful blessing to them that they had been to me. They say that your life passes before you when you die and now I absolutely believe that it is true. I believe that God brings all of the people that you have ever loved to be there with you. And He gives you that incredible slide show for you to view and re-view. It is my utmost certainty that God shows you the depth and breadth of your love - the love that you have been given and the love that you have given away. My dear friend Grace Moore told me as she lay dying of cancer that Christ came to visit her in a dream. He told her that when we stand at the judgment bar on the last day we will be asked only one question... "HOW WELL DID YOU LOVE?" And I can tell you that I now know personally that her vision is true. As I lay weeping on the table the doctor leaned over me and asked me what I was thinking. "I didn't get a chance to tell them how very much I love them," I whispered. "I didn't get a chance to say goodbye." He looked me directly in the eyes and softly brushed the top of my forehead with a kiss and replied "well, now you can go home and say HELLO! You won't have to say goodbye for a very long time." So what thought do I want to leave you with here? Don't let one more minute go by without telling those that you love how very much they mean to you. Hold on to each and every precious moment. Cherish your babies, your siblings, your parents, your friends... Be kind to those that despise you. Love them beyond measure. Love them long and hard and well. Don't let the sun set on one more day without telling everyone you love what he or she means to you. Say you are sorry if you need to, beg forgiveness if you must, climb over mountains and crawl across valleys to deliver the message to those that you cherish that your life would not be the same and you would not be who you are today without the gift of their presence in your life. Say it now and shout it loud while you can still say it and while they can still hear you!