Reaction Differences

When I was in the hospital a nurse came in and handed me information on living with heart disease.  I remember thinking I had a heart attack, I don't have heart disease. The two were in no way mutually exclusive in my mind.  What a sheltered world I lived in, huh?  I had never been really sick with much more than strep throat or the occasional flu.  Carolyn over at Heart Sisters wrote about this phenomenon in her post ‘Healthy Privilege’ – when you just can’t imagine being sick. I could have never imagined this.  This was something that happened to other people, not me.

I am in the CCU which I can't believe in the first place, and I know I am looking stunned while this nurse is trying to go over this information with me.  As if I had not reached illness overload already I could hardly digest that she was telling me I now had a lifelong chronic illness. (See Post Heart Attack Stun). In my mind heart disease was for old people.  Let me tell you that 42 feels really young when you are talking about heart disease and heart attacks. A heart attack was a one time thing; it was over and now I am well and I go home. Wrong--now I go home and take a lifelong regimen of cardiac medications including an anticoagulant, a beta blocker, a statin drug and aspirin. Now I go home and decide how this defines my life.

I came home and decided this was indeed going to define my life and that it would play a large part in defining my life.  I was pissed as hell that this had happened to me.  I was pissed that it had ruined my 'healthy privilege' as Carolyn calls it.  So, never one to sit idle I posted it on Facebook a couple days after I returned home.  Even some of my closest friends did not know when I decided to put it out for the world.  After working through a whole lot of anger and an extreme fear of dying pretty publicly, I've never looked back.  I shout survivor to whoever will listen.  If you give me more than two minutes of your time you will know that heart disease can affect you and not just affect you but kill you.  Even if you don't give me a full two minutes I will still tell you I am a survivor.  I will tell you over and over and I don't care if you get sick of it. Why? Because it will stick with one person and they will call an ambulance when they need to--maybe it will be you.

I have a friend that had a heart attack two years before I did and still to this day her friends do not know.  She has a hard time with the word survivor.  Hers was not massive, but something she found out about after the fact.  She is ashamed she didn't know and ashamed that she let her health get bad enough that she had a heart attack. The funny thing, she can tell complete strangers but she is ashamed to tell those that she knows. I told her to hang on to her hat, I'll make sure she gets comfortable with the term survivor (I know you are reading this girl--you'll get there!) Not to say I haven't had my struggles with this journey but overall I think I've done pretty well.

I think what this shows is there is no right or wrong way to react to a heart attack.  Really there is no right or wrong way to react to any serious diagnosis.  Each person has to work through the journey their own way.  So, if you are new here and you have found me because you are searching the net to find information after your own heart attack, just know that you will settle in. I know the feeling of fear you are experiencing and I know you are pissed that you now have a lifelong chronic illness.  I have met enough people that have been through this and everyone handles it differently.  Every emotion is valid.

How Do You Explain?

I have been pondering for the last few weeks how to explain the unfairness of very serious medical diagnosis to children.  There really is no easy way.  My children have been very fortunate in their lifetime not to feel the unfairness of life.  The worst unfairness they have had is the divorce of their father and I about 7 years ago and the first death of a grandparent this last fall.  There is so much tragedy and unfairness in the world that can't be imagined from our little town in Kansas. On one hand it is awesome that they don't know but on the other hand, life drips with unfairness and when it is never experienced, how can it be explained?

My heart attack was very scary for them.  Because I have been so open with the world about my experiences, they have been immersed in education about women and heart disease.  They volunteer with me at AHA--Kansas City events.  I am going to take them out of school this spring to volunteer with me at a Friday event.  It is of huge importance for them to see me take something really bad in my life and turn it into something really good.  The lesson is that life is what you make it.  I could have never not shared this and not spoken of it to them because for me that would have been be an impossible journey.  Perhaps this is not what someone else would choose and I would never fault someone for choosing not to share.  I took this chance to help and educate others and grabbed that bull by the horns.  Our lives are richer for it--richer for the people we have met on this journey that is strange, scary and beautiful all at the same time.

 I can set an example for them of how to handle the bad things, but what I can't explain is why the bad things happen. My middle school child has experienced a classmate and friend that has been diagnosed with leukemia.  She is very ill and currently cannot attend class.  The town we live in held a benefit last night in her honor if which she was able to attend.  My daughter and one of her friends went up to the rec center and were able to see her.  I think it frightened them because she is swollen and wearing a wig and from the description has some tubes attached (I didn't go because I have been very ill with strep and you certainly don't want to spread that to a child having chemo). I didn't see her appearance but I am not unfamiliar with how this treatment can change the appearance.

When my daughter got home last night I know she was looking for me to explain leukemia and then for me to tell her that her friend was going to be ok.  I want to tell her that but I also don't want to tell her that and then have her friend not be ok.  How much do you say to someone who is 12?  I found it incredibly difficult to educate and comfort because when you start explaining leukemia, there is nothing comforting about it.

So I turned the conversation to what we could do to help because I genuinely don't know how to explain the unfairness of cancer in a twelve year old (or in anyone for that matter). If I can't explain the unfairness to my daughter, imagine her parents explaining to her how sick she is.  My heart breaks for them and even though I don't know them, they are often in my thoughts.   This little girl loves Taylor Swift and wants to meet her--not that Taylor Swift will answer and I told my daughter this but I also told my daughter to get in and send and email and give it a try.  I am going to help her with that today. The worst that can happen is that you get an answer of no or that you don't get any answer.  You don't know if you don't try.  I had given her money for the things at the benefit--turned out everything was free so she donated the money.  I told her that although this does not seem like much, it is amazing what the little things can add up to.  It is a whole lot easier to explain that all of the little things that everyone in our community does for them adds up to a great big hug from our community for this little girl and her family.  All of the prayers that our community says for them, hopefully they can feel.  This is the lesson I teach because to teach the unfairness lesson is really tough to do and I don't know how to do it. 

I don't know how to do this because I still don't know how to explain why I got to live and 80 percent of women who experience what I did have the unfairness of dying. Why of those who do live my outcome has been so much better than others.  I'm quite sure in the end there is no way to really ever explain it. There is no way to explain why people suffer a devastating medical diagnosis; why some people survive a diagnosis and others don't.  It is not specific to heart attacks or cancer but is far reaching across many medical diagnoses.  I think what I teach to my children in the end is there is no  rhyme or reason and that is unfair. There really is no explanation of the unfairness but what you do with the unfairness is what matters.

I Love February!

Happy Saturday morning to you!

I know I have eluded to the fact that I was in no mood to celebrate American Heart Month in February of 2012. Survivor was too new to me and I was not ready to embrace it. When American Heart Month rolled around in 2013, I was a little more ready to embrace it. I went to the American Heart Association-- Kansas City Go Red Casting Call.  After having been a Go Red Ambassador for almost a year, I was ready to full on celebrate survivor this year! I had some of the most fabulous ladies by my side while we celebrated!

On February 6, I summoned the courage for live TV and appeared on KC Live.  I haven't watched it because it is weird to see myself on TV but my friends tell me I rocked it so I guess I will believe them:.

That evening we went red at Hamburger Mary's:

 

 

On February 7 we celebrated National Wear Red for Women Day and my family, friends and co-workers turned out in style! They turned my Facebook page RED! You can see for yourself here. We also went red at The Red Dress Dash:

 

Now, I am not sure anyone will believe this but I have been the dedicated social media queen for the AHA KC in February!

 



On February 10, I had the great pleasure of speaking to staff at the American Academy of Family Physicians about women and heart disease.

 

On February 12 I spoke with the fabulous ladies at the National Association of Professional Women:

I did an hour-long radio program:

 

You can find the podcast here under February 23.

 

I  spoke to my women's group WOAMTEC.

 

I interviewed for a story in the Lawrence Journal World. Rock Chalk!

 

I shared the stories of Liz, Keri, Regan, Shelly, Monica and Teri. What fabulous stories! If you have not read them, please do--discover what makes these women so incredible!

We went red at RA Sushi:

 

Finally, we stepped out in style last Saturday at the Heart and Stroke Ball and Pulse After-party. What a great evening this was as Kansas City turned out in icy weather to raise $780,000!



What a great month!  Now we move forward and focus on the Half Day For Your Heart luncheon on April 25 and the Kansas City Heart Walk on May 31! The weather is starting to show a hint of spring after this brutal winter and I was able to get out at work yesterday at lunch and walk with my friend and co-worker Donita. The brutalness of winter leaves me feeling like this:

 

 

Ever the optimist I know that spring will come and the remaining cold days are just dancing the cha-cha with spring:

 



Even if it remains cold, this is still my favorite time of year! Selection Sunday is fast approaching and I have crimson and blue pulsing through my lucky to still be beating heart!

 

Rock Chalk and have a great day:)! I hope spring is fast upon you no matter where you live!





Teri's Story--Stroke in her 40's

I am so excited and proud to share Teri's story with you as American Heart month winds down. Teri is an amazing woman and a real testament to resilience. Teri is one of my Kansas City Go Red Ambassador heart sisters too. I cannot tell you how fortunate I am to be part of this group of such beautiful, amazing survivors!  I am also so honored they have allowed me to share their stories during this very important month for all of us! Enjoy and learn from Teri's story!

 

I have been a nurse for ten years and a primary stroke care program coordinator for five.  I have worked with the American Heart Association of Kansas City and the community that I grew up in for five years, educating about the signs and symptoms of heart disease and stroke, and working on data and quality improvement initiatives.  I am also a runner!  I have run for thirty years of my life.  I got more serious about two years ago.  I stepped up my game and in January of 2013 started training for my first full marathon.  Those are two roles in my life that people identify me with; but my most important role is being a Mom to an amazing seventeen year old son named Parker.

In a twist of fate Memorial Day 2013, I had a stroke, while driving home from Starbucks with my son.  Because of his knowledge and ability to keep calm, he got me to the nearest primary stroke care center ½ a mile away so I could get lifesaving treatment fast.  Why does a healthy 43 year old runner have a stroke?  I found out that I had a congenital heart defect that caused my stroke, as well as a heart arrhythmia called atrial fibrillation.   I had been without symptoms my whole life.  It can happen to anyone.

Twenty-six  days after my stroke, I ran that marathon I had scheduled, with the support and unconditional love of my husband and son, as well as my priceless friends and family.  I ran a second one before I had the heart defect corrected to prevent further complications.  I am on long term blood thinning medications as well as medications to control my heart rhythm and rate.  Even though everyone wanted to wrap me in bubble wrap and place me in a corner, they knew I would slowly wilt.  They watched as I took the leap of faith, they believed in me, as they watched me learn to fly.

I have four marathons scheduled for 2014, and each one of them will be run in honor of all the women and families that heart disease affects.  My stroke didn’t only change me physically, it changed my spirit, it changed my clinical practice, and it changed my resolve to educate and advocate for women’s heart health.
 

JFK stated “One person can make a difference, and everyone should try”.  Those are words I live by every day.  If I can help prevent another person from having heart disease or stroke, I am over the moon.

Watch Teri tell her story.

Heart Attack in Her 30's

I have never actually met Monica.  We follow each others Facebook pages for our blogs.  She has an amazing story.  I would love to meet her someday.  Her story reminds me that just because my outcome has been as good as it has, it easily could have gone another way.  It still could go another way.  I keep her in my thoughts always.

I'm Monica Whalen. I've been married to the love of my life for 26 years and we have three children Shane, Lori, Kyle, and one precious granddaughter Nakayla Lynn. We live in Royston, Georgia on a small farm and enjoy quiet living. I love being on my computer, working in my garden, and outdoor fun including fishing, swimming, and walking in the woods.

My life drastically changed in a second on October 20, 1999 when I woke up to a full blown massive heart attack. When they say elephants on your chest they are not kidding--I was sweating, throwing up and was scared out of my mind. My husband called 911. At the time, we lived in a small town in Florida and they all knew me from where I worked. I loved my job as a waitress at a barbeque stop. All I remember was them saying, "Monica your BP is dangerously low and we are going to give you some nitro."

 I woke up in the ER looking for my husband.  He had told tell them that 5 days prior I had a thallium stress test. When the ER team got the results I was given a life saving drug but not before the heart attack damaged the left lower chamber of my heart. I was a 32 year old thin, healthy, young lady. They thought I was too young for heart disease and heart attack but they were obviously wrong. If you back  one month before my heart attack, I was going to doctor with symptoms that were dismissed as acid reflux.

 The night of my heart attack,  don't I wish was sent to a  major hospital by special ambulance since they could not get life flight to me.  Once I did get there, the doc looked at me and told me I was lucky to be alive. I was in and out so much I only remember bits and pieces but my husband Russ knows it all and he has helped me fill in missing pieces.  I was stabilized for two days then sent for a stent. Instead of the stent, they did emergent bypass surgery. It turned out I had a 95% blockage to the main left coronary artery.  I was in the hospital for 8 days during which a machine worked my body to help it heal. The damage was already done though. 

I now live with CHF and have been disabled since 2000.  We moved to Georgia in 2002 to a small farm. It was hard for me to become disabled. I have always worked and done what I wanted when I wanted. I now have meds to take and doctors to monitor me.  I felt like my life was taken from me--what I had known was no longer me.  I gained weight and was angry. One day, I said no more--I now intend to live my life and enjoy what I have.  Thankfully in 2007, God blessed us with our first grandchild, Nakayla Lynn.  She is my heart and soul and now I know why I was left here and why it is so important for me to be here to make sure other women know the warning signs and  know what heart disease is in women. 

April 25, 2008 is another important day for me.  This is the day I got my ICD that I call trigger.  When they told me it was to help prevent sudden cardiac death,  I was dumbfounded. I  once again felt like I am here for a reason and I will do my best to love my wonderful family for as long as the good lord allows me to. I have a wonderful loving family and wonderful friends.  I have friends from my blog,  Heart2Heart and others that help me and I hope that my story can help them--someone, somehow.

I always say:
Live life,  love life
Surviving heart disease one day at a time
for 14 years with trigger 04/08,
triple T ( new ICD 11/22/13).

You can also follow Monica on FB. 

Heart Attack Survivor at 40



I met Shelly at my first Go Red Ambassador meeting. She is another amazing lady and I am so proud to share her story! Like me, she is a heart attack survivor and she was in her very early 40's when she suffered her heart attack.  Here is Shelly's story:

 

 



Shelly and her family

It was a typical evening on August 14th, 2004 until about 11:00pm, when I woke up with a bad case of indigestion.  I tried to treat it but realized the pressure in my chest was getting worse.  As the hours went by, I broke into a cold sweat and became very weak and nauseous.  It became so bad, I could hardly move across the room and it was then that I made that 3:00 a.m. call to my sister who lives only a couple of blocks away.  My sister rushed over, took one look at me and knew I was in trouble.  She dialed 9-1-1 and within minutes the Lee’s Summit Fire Department showed up.  While they were checking my vital signs, my blood pressure dropped so low that they could not get a pulse.  I was rushed to the emergency room at Lee’s Summit hospital. It was the talk in the ER that a 40 year old woman was having a heart attack.  I was then rushed to Research Medical Center for an emergency cardiac catheterization. My heart had started beating irregularly and a defibrillator was used to shock me once to stop it and a second time to start it again.  During this scary scene, my sisters were watching and praying from the hallway.   An experience like this doesn’t just affect the individual but also affects family, friends and co-workers.  My son who was 11-years old at the time,  showed gratitude for my  survival by sending in a nomination to the KANSAS CITY’S KINDEST KANSAS CITIAN AWARD for the paramedic who helped save my life.   After looking back on this, I realize I had been having symptoms for several months.  I had been having shooting pains in my mouth/jaw periodically and pain in my right shoulder blade, which I never knew were signs of a heart attack.  If I had known, I would not have had to endure such a scary, scary night and neither would my family.  Since my heart attack, I have never had those symptoms again.  It is my mission to spread the word to other women to know the signs and to know the warnings!!!!  I am proud to be an Ambassador for Go Red For Women for the last several years and was honored to be a Co-Chair this year.  It is my mission to spread the word to bring awareness so it doesn’t happen to your mother, wife, sister, daughter, aunt, girlfriend….. or YOU!!!

Shelly (right) and her sisters

 

Shelly and Me--Heart Sisters!





Regan's Story--Congenital Heart Defect

February 7-14 was Congenital Heart Defect Week. The word "congenital" means existing at birth. The terms "congenital heart defect" and "congenital heart disease" are often used to mean the same thing, but "defect" is more accurate.

The heart ailment is a defect or abnormality, not a disease. A defect results when the heart or blood vessels near the heart don't develop normally before birth.  (American Heart Association)

Anyone can have a child with a congenital heart defect. Out of 1,000 births, nine babies will have some form of congenital heart disorder, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.

Successful treatment requires highly specialized care. Severe congenital heart disease requires extensive financial resources both in and out of the hospital. The presence of a serious congenital heart defect often results in an enormous emotional and financial strain on young families at a very vulnerable time. Patient/family education is an important part of successful coping. (American Heart Association)

My friend Jill is a fellow Go Red Ambassador at the Kansas City Chapter of the American Heart Association. Brad and Jill took their daughter Regan to the doctor when she was a week old for a routine checkup.  The nurse heard a pretty significant heart murmur and from there the next step was to set up appointment with a cardiologist.  Children’s Mercy Hospital and certainly a cardiology office was the last place her parents wanted to be with their first born baby.
 

The cardiologist did an echo cardiogram on Regan and found Transposition of the Great Arteries.  Regan’s pulmonary artery and aorta were switched.  You can imagine her parents surprise, let alone the doctors surprise.  Doctors do not find Transposition in their office.  Babies with Transposition are usually found in-utero or at birth, when the baby turns blue.  To Regan’s advantage, she also had “holes” in her heart allowing blood to flow to the right places, so needless to say, she didn’t turn blue at birth and Transposition wasn’t apparent.

(Read More about Regan's Condition here.)

The doctor told Brad and Jill that Regan’s heart was the size of a walnut and her pulmonary artery and her aorta were the size of pencil leads, but "not to worry, Dr Lofland performs this surgery routinely."  This does not make any parent feel better! The doctor explained that they would splice the veins, switch them and stitch them back together.    With the advancements in technology, the doctors were able to fix Regan's heart.  Regan is now a healthy 12 year old - who takes dance lessons, is an artist and has no restrictions in PE class. 

Brad and Jill  realized this situation was out of their control, but also realized they need to make a life long conscious effort be heart healthy.  They work together as a family to minimize future risks of heart problems:  they choose to eat healthy, exercise and get routine checkups.

Remember, heart disease doesn’t discriminate, it effects all ages of women, young and old!

The Luckiest Woman in the World!

I will begin to share the stories of others next week again but today, the day after National Wear Red for Women Day, I want you to see what makes me the luckiest woman in the world!  If you sent me a pic, thank you for your contribution to my fabulous day!

Keri's Story--3 Generations of Heart Disease Survivors

I am so happy to share Keri's story with you today.  Keri is one of my Go Red Ambassador heart sisters. She is an amazing woman and has an incredible story to tell!

 

 

 

 

My name is Keri Mathew, and I was born with heart disease.  Heart disease has been a part of my life and affected my family as long as I can remember.  In 1978, at the young age of 4, I was diagnosed with Aortic Stenosis and a Bicuspid Aortic Valve.  My parents had taken me in to the pediatrician for a regular well child check-up, and my doctor commented that my heart murmur that had been present since birth had not gone away, so he suggested that my parents get it checked out.  It was at that time that a heart catheterization showed I was born with this congenital heart defect.   Then, just a few short months later that same year, my Dad found out he also had the exact same heart defect.  Fast forward a few years, and in 1985, my Dad had his first open heart surgery (at the age of 39) to replace his aortic valve; my paternal grandfather died of a massive heart attack at the age of 66; in 1998 my son, Dakota was born with the exact same heart defect, and in 2009 my Dad had his second open heart surgery to replace a large section of his aorta that had a significant aneurysm developing.

Since my heart defect was found at such a young age, I had the benefit of “knowing” about my heart problems, and have been closely monitored by cardiologists my entire life.  As a child, I was allowed to be as physically active as my body would tolerate, until upper elementary age, when I really started noticing that I was getting winded much easier than other kids and was eventually pulled from all sports in junior high.   As I got older and the leakage in my heart valve was getting worse, I was even told by my cardiologist that there was a chance I would not be able to have children in the future because of the strain a pregnancy could have on my heart.   This was such devastating news, as I had always dreamed of having my own family one day.  Fortunately, I was blessed to meet a wonderful man in college who became my husband and was willing to stand beside me through this journey.  So, shortly after we were married, I began undergoing several tests throughout the next year to determine if my heart was strong enough for pregnancy, and my cardiologist agreed to let us begin our family.   And, about 10 months later, we were blessed with the birth of our first child in May of 1998 – a son, Dakota!  My pregnancy with Dakota went as smoothly as could be expected.  We knew that since the heart defect my Dad and I both had was obviously genetic, there was a chance our children could also have the same defect.  It ends up that Dakota was also born with Aortic Stenosis and a Bicuspid Aortic Valve Disease. 

After I had Dakota, the leakage in my heart valve continued to get worse, the aneurysm that was developing in my aorta was getting larger, and my symptoms of shortness of breath and a decrease in energy was getting more prevalent.   At this point, I knew in my mind my heart surgery was going to need to happen, but I desperately wanted to have one more child.  And, 4 ½ years after Dakota was born, we were blessed with the birth of our daughter, Riley.  This pregnancy was much more difficult on me, and my quality of life was quickly deteriorating after she was born.  It began getting extremely difficult to just walk through the grocery store, do household chores or carry my infant daughter through the house.  So, in November 2003, at the age of 29, with two small children at home (Dakota was 5 ½ and Riley was 9 months old), I underwent my open heart surgery to have an aortic root replacement and a mechanical aortic valve implanted.  It was a difficult time for our family, as I was not able to hold, lift, or carry my children for 8 weeks after my open heart surgery.  But, I once again was extremely blessed, as we were showered with love and support from our wonderful family, friends and church family! 

The Matthew Family

After my open heart surgery, I was given a new lease on life and felt great for about 5 or 6 years.  But, then I developed some electrical issues and in October 2010, had a pacemaker implanted.  So, this year I celebrate the 10^th anniversary of my open heart surgery, and the 3 year anniversary of my pacemaker.  But unfortunately, my story doesn’t end there, as just this past summer I suffered a TIA (also referred to as a mini stroke).  Thankfully, I made a full recovery with the help of today’s medical advancements.  However, I am embarrassed to say that until the doctor’s told me what happened, I didn’t believe that it could happen to me! 

Now, as a 39 year old wife, mother, career woman and heart disease survivor, I am even more passionate about telling others about the risks and warning signs of heart disease and stroke and helping raise awareness.   I began working as a Go Red Ambassador with the Kansas City American Heart Association in 2009, and have been blessed to work alongside other women who have been personally affected by heart disease, or have a loved one who has been touched by heart disease and are passionate about the cause.   I have had the opportunity to share my story and help raise awareness that heart disease is the Number 1 killer of all women.  But I have faith that with continued education and awareness, we can change that statistic!   I am often told that I do not look like the face of someone living with heart disease or who recently had a mini stroke….but that is just it – you can’t see heart disease in the mirror and it does not discriminate! 

 

Today, I am happy to say that we are a family of three generations of heart disease survivors! Dakota is a very active fifteen year old and plays soccer at the  high school. As well, he is in the high schools drum line and choirs and is active in the youth group at our church. He is being closely monitored by the cardiologist for now, but will likely need to have his heart "fixed" at some point too. Our family has already experienced generations of medical advancements, and  we know that the research and developments that are made today one day will be used to help Dakota and other families facing heart disease. 

    

3 Generations of Heart Disease Survivors!