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Dina Piersawl Chicago, IL

I suffered a mini-stroke on January 2, 2004, but my story began a few days earlier during the holidays.  I was visiting my parents in Kentucky and had a nagging headache.  My mother told me that my eyes looked funny and asked me what was wrong - a mother always knows when there is a problem with their children no matter how old we are.

I barely made it through the holidays with my parents, as each day the headache seemed to get worse.  When I returned to Chicago, I felt so terrible I decided to go to the emergency room.  I also felt like a football player was standing on my chest.  Being an ex-athlete, I just knew something was wrong.

Upon arrival to the ER on Dec. 30, my blood pressure was quite elevated so they put a nitroglycerin patch on my chest and left me in a holding room to see if my BP would go down.  My BP remained elevated and the intern that was treating me told me to call my doctor after the holiday.  He sent me home after a couple hours and told me my headache and elevated BP was probably due to ‘holiday stress’.

Once at home, my headache never ceased to stop hurting and that football player was still standing on my chest.  I thought I was going to die.  New Year's Day came and every pain I had was much worse. It was then I knew I needed to listen to my body.

I returned to the same ER on January 2, 2004.  My BP was off the charts, the admitting nurse looked at me as if I was going to die right there on the spot.  I will never forget her facial expression as it scared me to death.  They rushed me to a gurney, cut my shirt off, started IV's, slapped another nitroglycerin patch on my chest and rolled me into this cold, sterile room with this huge piece of equipment that looked like a spaceship.  I was scared to death and wanted my Mama!

The spaceship turned out to be the CAT scan equipment. After the scan was completed, I was taken back to the ER to await the doctor.

The ER doctor came in and asked, "How are you feeling?"  I was like, "you've got to be kidding right?!"  Then he showed me a photo of my brain, which showed the veins.  My brain had a tiny little spot on it.  The doctor explained that I had a Transient Ischemic Attack (TIA) or mini-stroke.

My first thought was “what?!!  Me?!!  I'm an ex-athlete, this can't be, and I’m in good shape” and on and on.  Then the doctor started examining me and it became very apparent that something was really wrong with the left side of my body.  I could not move my left arm or left leg. Honestly, this scared me more than hearing I had just had a Transient Ischemic Attack (TIA).

It took eight weeks of in-house and hospital physical therapy to regain my left side.  In retrospect, I was very lucky.  My stroke was mild and I made a full recovery.  My blood pressure is under control and I am blessed.  I have residual damage on my left side.  It's not as strong as it once was but that's minor in the scheme of things. 

 

Kaelyn Mulcahy Apple Valley, MN

Last year, when I was 21, I had three strokes. I was at work when the first one happened. I was dizzy and a little disoriented with a bad headache on the left side of my head and sharp pain at the back of my neck. After an hour and still not feeling well I went home. I took a nap, which is when I believe I had the next two strokes since when I woke up I was so much worse. My head hurt even more and I couldn’t walk straight. I was so dizzy that it caused me to throw up four times. My roommate drove me to the ER. The doctor took a CT scan and when that was clear he ruled my symptoms as a really bad migraine. He gave me a pill for the nausea and the vertigo and told me to take Excedrin for my headache. My nausea and vertigo went away but no matter how often I took Excedrin Migraine for my headaches they never fully went away.

Four days later, April 4th, I passed out at work. I called my mom and she wanted me to see my primary doctor. I had a hard time getting in to see him. It wasn’t until my mom asked to speak with him personally that I got in. Bless him; he skipped his lunch on April 6th to see me. He didn’t like the sound of my symptoms and was angry that the ER doctors in didn’t do further testing. My doctor had me do an MRI and it showed three strokes in my cerebellum. I was immediately admitted into the ER and transferred to another hospital where I stayed for 4 days getting all kinds of tests done. Turns out I have a PFO (hole between my right and left atrial), a clotting disorder, hereditary high cholesterol, and a fainting disorder. The whole situation didn’t hit me until 2 ½ weeks after I was released.

I didn’t know myself that summer. I was sad at first then became angry. Finally I became scared. I was scared that I would have another stroke, one that would have lasting damage, and scared for my life. Mostly I was scared that since I will be considered a high risk pregnancy, I wouldn’t be able to have children, and if I could that something would happen to the baby. I was so depressed and stressed and I would snap at my roommates over everything. That’s not like me at all, I always felt so bad afterwards. I had to distract my mind every second of the day or else I would break down crying. Every night I cried myself to sleep. I cried so hard I got a bunch of little blood vessels under my eyes. I didn’t laugh for real until the beginning of July. I threw myself into my work; I would pick up shifts helping in lumber. I had to ask a day off every week to go to a doctor appointment, otherwise I worked every day. I didn’t have a day off for myself until mid- July. Once school started again I was better. I still had to distract myself during the day but I was mostly myself again. I am a lot better now, still struggle every now and then but I am doing good. I don’t want someone else my age, or anyone, to have to go through what I went through.

Katie Krisko-Hagel Eagan, MN

I am a registered nurse.  My Ph.D. is in nursing with a specific focus on heart disease, especially in women. My stroke story is about my mother who died from stroke and heart disease six years ago.

 
It was 1995 when she presented to an emergency room after having experienced dizziness, weakness, and loss of consciousness. She had a known history of high blood pressure yet she was admitted for an inner ear disorder. I was told later by the nurse that she was alert and oriented as evidenced by her ability to answer questions about where she lived, living relatives (who, in fact, were no longer alive), etc. Yet, nobody bothered to check to see if her answers were correct; because they weren't. My mother's memory was quite impaired and by this time, the window of opportunity had passed and brain damage had occurred. Her life was never the same since then. She lost her ability to live independently (she was only in her mid-seventies at the time) and eventually needed to live out her final years in a nursing home as she continued to suffer more strokes. Since 1995, much has improved about how people are assessed in an emergency room and treated by receiving tPA once ischemic stroke has been identified. Many brains have been saved; many lives have been uninterrupted and spared. Also, since 1995, a lot has been done about the prevention of stroke. This has all come about because of research. But, the battle isn't over because many people still suffer and die from stroke and heart disease every year. In fact, heart disease is still the number one killer of men and women in the United States. Research needs to continue in order to change these statistics. Without research, many lives like my mother’s will continue to be cut short or so drastically altered that they will never be the same again. Prevention and adequate treatment is key and can mean the difference between life (as well as quality of life) and death. Only through research can we have any hope to change the statistics. Only by continuing to fund that research, we can make it happen.

Mary Kay Ballasiotes, Mid-Atlantic Affiliate

Mary Kay Ballasiotes has been advocating for children for over 15 years.  Her daughter, Michelle had a stroke before she was born and that moment changed both of their lives forever. Mary Kay’s advocacy days started in 2002 in Chicago where she founded the Childhood Stroke & Hemiplegia Connections of Illinois, simply because there was a need for it.  Before long, Mary Kay and her daughter were fixtures at Lobby Day.  At National Lobby Day, May 2006, Mary Kay spoke with the Vice President of the American Stroke Association (ASA) and told him about her daughter having a stroke before birth.  She learned that the VP had never heard of pediatric stroke. From that day on Mary Kay made it her mission to collaborate with the American Heart Association (AHA) and the ASA about pediatric stroke, and to raise awareness about it.

Over the years, Mary Kay and Michelle attended heart walks, lobby days, and were very vocal about pediatric stroke in each state they have lived in: Illinois, Georgia, and now North Carolina. Most recently, Mary Kay co-produced a pediatric stroke awareness video with the American Heart Association/American Stroke Association.  The video was created to raise awareness that strokes can happen in babies, children and even before birth. Join us here  to watch this impactful video.   

Making a difference in people’s lives is the most rewarding element of being part of advocacy.  Mary Kay and Michelle have attended many lobby days over the years, both national and state.  The experience never gets old to Mary Kay.  She loves seeing how her passion and effort can make a difference, and strongly feels that one person can make a difference!  In August 2010, Mary Kay and her family moved to North Carolina where she soon started working with Betsy Vetter, the AHA Director of Government Relations in the Mid-Atlantic Affiliate.  Mary Kay readily admits her love of working with Betsy.  She is one of the reasons Mary Kay is still volunteering and advocating with AHA.  Mary Kay feeds off Betsy’s passion and enthusiasm and feels that Betsy has a gift for working with volunteers and government officials.

Mary Kay is very proud of her daughter Michelle and the hard work that she has been doing right alongside her mother. While back in Chicago in 2007, Michelle was chosen to be one of the 12 “Faces of Cardiovascular Disease.”  Her image was captured on one of many large posters that were circulated around the United States for Heart Walks.  These posters are still being used today.  Because of Mary Kay and Michelle’s hard work, they were both featured in an ABC news article once again shedding light on pediatric stroke. In 2009, Michelle was honored with the Stroke Hero of the Year and received the National Youth Advocate of the Year award.

Mary Kay’s calling is to advocate for children. She feels that things happen for a reason. The stroke that Michelle suffered enabled both Michelle and Mary Kay to reach other families and make a difference in their lives and in the area of pediatric stroke.  Mary Kay does not have much free time, but when she does, she enjoys going out to lunch with friends and reading. 

One great memory Mary Kay has included that of her son, Alex.  While driving back from picking Alex up at college, he remarked how much he admires the work that she has done over the years.  The example that Mary Kay has provided has empowered him to pay it forward by getting involved in politics and leadership roles.   May Kay continues to advocate for children and wants everyone to know that one person can make a difference.

 

 

 Advocate interview provided by Blog Contributor Amanda Orfitelli.

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