Friday, April 10, 2015

A Renewal

I have a new blog site! I am moving to Word Press,

A renewal of sorts.  If you have landed here, thank you for visiting! All new posts will be on Word  Press.

Sunday, March 22, 2015

Courage, Dear Heart

Back in the fall, I met a new to me Heart Sister, Jenna.  As are most of my heart sisters, Jenna is an amazing woman. She is an incredible advocate, mom to two young children and an Army wife.

Jenna suffers from idopathic (meaning undetermined origin) cardiomyopathy.  According to the Mayo Clinic cardiomyopathy is " a condition where the heart muscle is abnormal. The main types of cardiomyopathy include dilated, hypertrophic and restrictive cardiomyopathy. Cardiomyopathy makes it harder for your heart to pump and deliver blood to the rest of your body. Cardiomyopathy can lead to heart failure.Cardiomyopathy can be treated. The type of treatment you'll receive depends on which type of cardiomyopathy you have and how serious it is. Your treatment may include medications, surgically implanted devices or, in severe cases, a heart transplant"

 Jenna (far left) with me (center) at the 2015 Red Dress Dash

I was so surprised to read Jenna's Facebook status several nights ago because even though we all know each other are sick, I really didn't understand how sick Jenna is. She and I had a conversation at the KC Heart and Stroke Ball about how she would eventually need a transplant.  When we stand there talking to each other looking healthy it is easy to put aside the fact that she or I or any of our heart sisters are really sick. She is so young and I guess it never dawned on me when I looked at her that eventually would be now. Her status read:

"The past month or so has been rather eventful in the Bell house. As many of you know my passion and advocacy for heart health stems from my own battle with heart disease. We've reached a pretty climatic point in my cardiac journey and will be placed on the transplant list. We've known this was an eventual step for me and are ready to move forward. As we were scheduled to PCS this summer to Leavenworth, the kids and I are going to go ahead and make that move. Dan will remain here as a geographical bachelor for a bit and join us soon. 
I've started a blog if you are interested in my journey to this point all that info is already there. Scroll to the bottom to start at the beginning. I'll post more stories in detail as the weeks go on and obviously post when I get 'the call'.
Many people have already asked, "How can we help?". We are so appreciative of your support and willingness to help. There isn't a lot that can be done for me directly but I've added a few ideas below. The first two are pretty self explanatory but I want to take a second to explain the third - see comments.

Courage, dear heart ~ C.S. Lewis"

Jenna's cardiologist has started a clinic in Kansas City to help stop high school athletes from dropping dead during their sport. Had Jenna's doctor not sent her to a cardiologist with her mild symptoms or had she participated in a cardio-intensive sport in high school she might not be here today. She fully supports this program to get high school athletes cardiac screenings for $60. Sadly, some families can't afford $60 to protect their student. If you want to do something in Jenna's honor,  please consider making a donation to help this amazing program in its efforts to end sudden cardiac arrest in high school athletes.

Jenna's journey is important for so many reasons.  It teaches that heart disease does not just happen for elderly women or  even middle-aged women like me. It happens in young women and sometimes very young women.  Heart disease is not just heart attacks and strokes.  Heart disease can come in the form of cardiomyopathy or congenital heart defects. It teaches that this disease of heart disease is mostly invisible and silent if not shared. Jenna's journey represents grace and beauty in the face of terrible illness. She represents resiliency and determination. She represents an incredible story that I am so honored to share with you. Most of all she represents another amazing woman that I am so fortunate to know and advocate with--another amazing woman who I would not know if it were not for heart disease.  This, my friends, is the silver lining of heart disease. 

Follow Jenna's journey at Grapefruit And Tattoos .  I love the name of her blog and wallow in the sadness of the truth of the name as I love both grapefruit and tattoos!


Saturday, February 28, 2015

My Life Is Why

American Heart Month 2015 comes to a close today.  I have had a blast with the best friends and family anyone could ask for.

The American Heart Association and American Stroke Association ask you this year What Is Your Why?  Why do you choose to lead a healthier, longer life?

For me, my life is why.  I have to be why or none of the other whys matter.

Take care of your hearts--go see your doctor, know your numbers and know your family history.  Eat more fruits and veggies and get up off the couch--start small and work your way up.  Any healthy changes you make are worth it!

Wednesday, February 25, 2015

Take Two--Heart Attack at 40

As we near the close of American Heart Month, I am re-running my post of Shelly's story from last year because it is important:

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!

Friday, February 20, 2015

Take Two--Monica's Story

 I still have not met Monica, but I want to re-run this during American Heart Month this year.  Monica was in her 30's when she had her heart attack!! Her story is very important.  Here is a re-run of last years post:

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

Sunday, February 15, 2015

Take Two--Stroke in Her 40's

Again this year, I am so happy to share this post from American Heart Month last year!

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!

By Teri Ackerson

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.

Wednesday, February 11, 2015

Take Two--Keri's Story

Last year, I shared Keri's story with you.  These stories are so important to me.  If you are just finding my website because you have had a cardiac event, I think it is important for you to know you are not alone.  People have had the same cardiac events and have gone on to live full lives.  These young women have had very serious events and and they along with me get out and now educate other women.  They are amazing.  Here is take two--Keri's story.

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 10th 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!