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 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!

Take Two--A Mother's Heart

I think the stories of women that have suffered from heart disease and stroke are very powerful.  I ran a series of stories last year during February that deserve to be run again.  I'll start with my beautiful heart sister Liz.  Enjoy!

A Mother’s Heart



By Liz Tatham



For most of my life I never imagined that I would have a story that others would want to hear. And four years ago I never imagined that the story unfolding all around me would be one that others would want me to share over and over again. I honestly would not have chosen to have been thrust into the spotlight for the reasons that I became of interest to people I’d never met, but it wasn’t my choice. The choice had been made for me before I knew there were choices to be made. So once I became aware of the story that was actually my story, each step I took from that moment on was very clear because I am a wife, a mother, and a fighter.

 My name is Liz. I am still Elizabeth to most of my relatives and friends from pre-college days, but most of my friends know me as Liz. Usually when one begins a story I would agree with Maria from the Sound of Music that “…the very beginning (is) a very good place to start.…” However, I do not remember the beginning so I will start with what I thought was the beginning. In September of 2009 my youngest and fourth child asked if I would help with the running club at his elementary school. I mentally patted myself on the back thinking that my 10 year-old son must think I’m in pretty good shape to ask me to be a part of the running club. After all, for a few months I had been feeling like I had a great routine with a good balance of time with my family, exercising with a personal trainer, getting my children where they needed to be (actually on time), and volunteering at school and my church. I dare say that I thought I had it all together. I told my son that I would be happy to help and we could do our first 5k together in October. By the second meeting of the running club I felt I no longer deserved my visualized pat on the back. It was embarrassing. I could not keep up with these kids. I volunteered to be the walker at the back of the group to make sure no one was left behind or wandered off the park trail. At least that’s what I told myself and the other adults. I could not believe I had thought I was in such great shape. By week three I skipped running club. I was tired and had developed a bad cough. I went to the doctor thinking my fall allergies had become bronchitis. For a few years I had struggled with bronchitis and it seemed to be related to my allergies, so my family doctor gave me a round of antibiotics and an inhaler. Trying to convince myself I was feeling better I returned to my son’s running club the next week. I walked the club’s route around the park and returned home completely exhausted. Within two days I knew I wasn’t getting better. Maybe I had something worse than bronchitis. I returned to my doctor complaining of exhaustion and a pain between my shoulder blades and increased indigestion. An x-ray showed no signs of pneumonia and my EKG was normal, so I was sent for a gall bladder scan. Surely that was it…my gall bladder just needed to come out. Yes, finally! So I headed home certain that this was all figured out and I’d be feeling better soon. 

Meanwhile my once comfortable routine was exhausting. I had always been able to push myself through anything, but now it was like trying to push a brick wall. I couldn’t keep up with household chores, everything I ate gave me severe indigestion, and walking up the stairs in my home felt like running five miles. It was so much work to walk up those stairs and doing so left me so short of breath that I crawled up the stairs when no one else was home. And when my family was home, I looked in all directions to make sure no one was watching before I crawled up the stairs. I felt awful but didn’t want my husband and four children to know how badly I was really feeling. I convinced myself that I was exhausted from trying to keep up with four very active children. Who wouldn’t be exhausted? I told myself I was doing what I needed to do to get better. I had been to my family doctor twice. My blood pressure, oxygen level, and blood work were all good, but I was still waiting for the scan of my gall bladder. I had to be patient and rest.  

Over the next week my routine had changed completely. I would take my children to school and instead of going to the gym I’d return home to sleep. The exhaustion I felt was unlike anything I’d ever experienced before. I was so exhausted that I would sleep until it was time to pick my children up from school. One night when my husband was out of town I couldn’t sleep at all even though I was exhausted. I felt like there was a heavy stack of books on my chest and I felt like I was trying to breath under water. I finally got out of bed and sat at the top of the stairs. I remember thinking “I feel horrible. Maybe I should go to the emergency room. The doctor couldn’t find anything wrong with me. Maybe this is all in my head.” And as I sat there my heart raced. I thought if my husband or my kids felt like this I’d call 911. But I didn’t call 911. I didn’t want to scare my children by waking them in the middle of the night. I talked myself into returning to bed and propped myself up on several pillows so I could breathe more comfortably. I lightly dozed until morning. After I took my kids to school I called the doctor’s office and asked to be seen as soon as possible. I told them how difficult it had been to sleep and that I felt like I was drowning if I wasn’t propped up on my pillows. I was immediately transferred to a nurse. She asked me if I was short of breath and if I was having chest pains. I said “I wouldn’t call it chest pain. I would call it a chest discomfort. And I’m on an inhaler for bronchitis so that probably explains my breathing.” The nurse said “If you are having chest pains and are short of breath you need to call 911.” Tired and frustrated and wondering why I hadn’t heard about my gall bladder scan yet I repeated what I had just told her. She said she would see if the doctor could see me and within 2 minutes she said my doctor would see me as soon as I could get to the office. Finally. A month of feeling awful and surely the doctor had it figured out now.

I didn’t even wait to see my doctor. The nurse took me to an exam room immediately to run an EKG and take my blood pressure. Both were normal. So she placed that little oxygen thing on my finger and led me on a brisk walk through the office. My oxygen was fine. When my doctor saw me he said he couldn’t explain my symptoms. He said my gall bladder scan looked good. He was concerned that I wasn’t feeling better, so he referred me to a cardiologist. Wow. A cardiologist. I didn’t need a cardiologist! I exercised and was kind of a health nut. I did not need a cardiologist. I took a deep breath and sighed and heard myself say “Okay.” At least a cardiologist could let him know my heart was healthy so we could figure out what was really making me sick. So I was scheduled to see a cardiologist in two weeks.  

During those two weeks before my cardiologist appointment, I continued my new routine of dropping my kids at school and returning home to sleep until it was time to pick them up. I would throw laundry in the washer before returning to bed in the morning and then toss it the dryer right before school pick up. Our family’s meals were ones easily to put together, carryout, or do it yourself. My kids and my husband knew I didn’t feel well so they were patient with me and tried to help more around the house. I took a break from volunteering outside of our home. I told everyone I hadn’t been feeling well and would return to volunteer when I was better.  

One week before my cardiologist appointment and two weeks before my 42nd birthday, I completed the 5k I had told my son we would do together with his running club. The extra rest I’d allowed myself had given me enough of energy to push through. I was so slow that my husband ran on ahead with my son who was eager and excited to be running (not walking) his first 5k. I walked most of the way, but my son cheered for me so enthusiastically at the finish line that I pushed as hard as I could to run the last stretch. We celebrated with breakfast and then returned home so I could sleep in my propped up position.  

The following week I went to my cardiologist appointment with an attitude of “Let’s get this over with.” My husband had wanted to go with me, but I didn’t want him to have to rearrange his work and travel schedule when I knew this was going to be a short doctor’s visit. I told him I would be okay going by myself and I didn’t want anyone else to know because I didn’t need my friends freaking out that I was seeing a heart doctor. I was polite enough at the cardiologist office. I filled out all the paperwork and smiled at everyone. A few of the people in the waiting room looked around me like I was supposed to be with someone. One even asked me if I was waiting for my mom or dad. I felt like I was in a Sesame Street game and I was the one that was not like the others. I was relieved to finally be called out of the waiting area to have an EKG, which was normal. When the cardiologist entered my exam room he sat down and had me describe my symptoms while he looked over my records. He stood up and said “I can’t imagine that there’s anything wrong with your heart. You’re young and you look healthy.” I asked him to write that on a piece of paper so I could give it to my husband and return to my family doctor to figure out what was really wrong with me. He told me that since I was already there and my doctor had concerns I should have tests done that day. Then he listened to my heart and said “You have a murmur. Has anyone ever told you that?” I said “No.” He said “Don’t worry about it. Murmurs are very common in thinner women.” So I didn’t worry about it and hoped these tests would be finished in time for me to pick my kids up from school. I spent the next few hours having blood drawn, getting a CAT Scan and finally an echocardiogram and then a stress echocardiogram. During the echo I was ready to take a nap, so I asked the technician questions to keep myself awake. He answered by telling me what he was looking at. It was interesting to me until he said “Oh, you have a bicuspid valve.” So I asked “Is that bad?” He responded “Most people have a tricuspid valve.” And then he seemed more serious than before. I asked what he was doing and he said he needed to take measurements. I had no idea what he was measuring but could tell that he was not as chatty as he was before. He made a phone call to the cardiologist and then I was put on the treadmill for 15-20 minutes and then back to the echo where I assume he took more “measurements.” When my echo was finished I was told I could leave. I asked “Do I need to do anything else?” “No. The cardiology office will call you to schedule a follow up appointment.” Awesome! I still had time to get my kids and this thing with my heart couldn’t be too bad if they were letting me leave the hospital. I called my husband on my way to the car. He’d been waiting for my call and asked how my appointment went. Over the past four years I have replayed this scene of myself walking to my car in that parking lot like it was a scene out of a movie and I hear myself say to my husband “There’s something wrong with my heart. But don’t worry about it. It can’t be that bad because they let me leave the hospital.” On the other end of the phone was silence. I don’t even remember what my husband said other than “I love you.” He came home on the next flight that night. 

Indeed there was something wrong with my heart. The following week I returned to the cardiologist with my husband to learn that I’d been born with a defective heart valve. I had a bicuspid valve instead of a tricuspid valve. Instead of a valve that looked like a lovely peace sign, my valve was two misshapen sloppy halves that did not fit together anymore. It was worn out and no longer closing as it was supposed to. The backup of blood was causing my heart to become enlarged. My body needed all of my energy for the extra work my heart was doing. I asked “Can you fix it?” That’s all I wanted to know. I didn’t need all of these details. I just needed to know that my heart could be fixed. The cardiologist used far too many words when he could have just said “yes.” The next week I began hearing more big words like the TEE or a transesophageal echocardiogram I was having where I went to sleep and a little camera was run down my throat to get a closer look at my failing heart valve. On a scale of 1 to 10 where 10 was the worse, the cardiologist told my husband my valve was a 7 but failed to explain clearly what a 7 meant. We were scheduled for another cardiology appointment in two weeks when we would learn what a 7 meant.

I became more exhausted than I even thought possible and struggled to accept that there was something wrong with my heart. I had just turned 42 and had thought I was in the best shape of my life. In just a few weeks I had gone from walking and running almost 15 miles a week to crawling up the stairs in my home. I thought I had been doing everything right. How could I have been so wrong? Less than a week after my TEE my symptoms worsened so much so that I remember waking one night to feel my husband’s ear pressed to my chest to listen to my heart. He decided we would not wait two weeks for an explanation and he made sure we saw the cardiologist the next day. Given the worsening of my symptoms the cardiologist was ready to schedule me for open heart surgery the following week and began to talk about the benefits of an artificial valve over a tissue valve. It was too much for me to hear. My husband’s birthday was the following week and this was not the way I wanted to celebrate. Prior to my appointment my husband and I had separately heard from a friend and someone through his job that Cleveland Clinic was the best heart hospital. He insisted that the cardiologist refer us to Cleveland Clinic for a second opinion. By the time we left the cardiology office Cleveland Clinic had scheduled an appointment for me on November 5, 2009…my husband’s 42nd birthday.

Many things became a blur in my memories from that moment on. My husband and I flew to Cleveland for my appointment on November 4th. It was bitterly cold and it just seemed like appropriate weather. On November 5th we spent the entire day at the hospital. I saw a cardiologist and then was sent to a second cardiologist. The second cardiologist said he knew exactly which surgeon I needed to see and sent me for a more technologically advanced echocardiogram while the hospital tried to work me into see the specified surgeon. At the end of the day it had been arranged for us to meet with the surgeon, Dr. Gosta Pettersson, in between surgeries. In just a few minutes my husband and I knew I was in very good hands. Everything was explained to us very clearly. I was told there was nothing I could have done differently to prevent my valve from wearing out. He told us that he was surprised that I hadn’t needed surgery earlier in life. And as we sat there listening to Dr. Pettersson, I thought “My mom would like him.” He was soft spoken, had a gentle demeanor, and seemed genuinely excited to see me. Then he smiled and told me my heart valve was very rare. By the time most people with a bicuspid valve got to him, their valves had lost all elasticity and become stenoic. Because mine was not stenoic, and he smiled bigger “Your valve can be repaired.” He explained that only a very small percentage of patients could be given the option of a valve repair. I fell into this small percentage and if I chose this option my surgery would be a minimally invasive open heart surgery and I would not have to take blood thinners for the rest of my life as I would with an artificial valve. It also happened to be his specialty. He had brought the surgery to Cleveland Clinic and it was one of the few hospitals in the world that could offer me such a surgery. He explained my other options as well noting the risk with a repair, although rare, was that it could fail and then I’d need to choose to have an artificial valve. He said I’d need surgery within the next few months, by not immediately as I’d been told the week before. He excused himself to return to surgery and his nurse scheduled my surgery for January 7th, 2010.  

I was grateful I didn’t need surgery until January. And I was grateful for 4 surgical options. I had decided that the repair was the surgery I wanted. That night we celebrated my husband’s birthday with dinner in Cleveland and I felt relieved to know that my heart was going to be fixed. There was so much to process. Processing everything would have to wait until after surgery. I was told to stay healthy. My focus had to be on staying well and spending time with my husband and children. I became somewhat of a hermit to make sure I didn’t come in contact with people who were sick. I called a few friends and sent others notes to tell them the news. There was no easy way to say “I’m having open heart surgery” when your friends thought you were perfectly healthy. But I didn’t have time to explain too many details. From the time I was scheduled for surgery to the day I’d return to Cleveland I’d celebrate Thanksgiving, my daughters’ birthdays, Christmas, and New Years’. I slept when my family was gone so I could spend awake hours with them. Friends and neighbors helped get my children to and from school and their activities. As much as we tried to keep a routine, it was hard for all of us. My oldest son drove home from his freshman year of college every weekend and my older daughter continued working hard with her culinary competition team while also taking on extra chores at home. My younger daughter was 14. She was usually talkative and funny, but she didn’t want to talk and laughter seemed to vanish from our home. My youngest tried to put on a brave face every day and would check on me often to ask me if I needed anything. One evening though, he couldn’t hold back his tears any longer. When I asked him what was wrong he said he was angry. And despite the 5 pound weight limit I’d been given when lifting, I picked him up and hugged him and rocked him. He told me he was afraid I was going to die. I took his still chubby little boy face in my hands and looked into his eyes and told him I would do everything I could to get better. I told him I had the best doctor, the best surgeon and I would do what they told me I needed to do to get better (except not hold my son at that moment). And then I promised my son that when I was better I would do everything I could to make sure other little boys would not have to be afraid of losing their mommies. I asked him if he would do another 5k with me when I was better and he agreed. 

I don’t remember much from Christmas of 2009, other than the beautiful snow storm. We were snowed in and the fresh white blanket of snow gave my family a much needed peace that day. My son was happy that the six of us were “trapped” together and he played in the snow as close to the front door as he could get so I could watch him. A few days later my husband would take our younger two children sledding while I rested. To this day I cherish the photos of them playing, laughing, and smiling in the snow. Those were the images I needed to take with me when I left home for surgery to remind me that I would get better and then laughter would return for all of us. The night before I left for Cleveland I remember my 14 year old and my 10 year lying on each side of me in my bed. We compared the sizes of our feet and they snuggled as close to me as they could get. I wondered if it was the last time I’d get to hold them, but I wouldn’t cry or share these thoughts because I was determined to get better and watch their feet grow.   

On January 5th, 2010 I endured a long day of pre-surgery preparations. The last procedure was a heart catheterization to make sure I only needed surgery for my heart valve and nothing else. With the exception of my faulty valve the rest of my heart looked very healthy. But recovering from the catheterization took hours longer than we expected. My blood pressure dropped and wanted to stay low. I didn’t drink sugary soda, but I was given several in an attempt to elevate my blood pressure. Several hours later I was finally allowed to leave the hospital and my husband found some take out dinner at a place that was still open. The next day we returned to Cleveland Clinic to go over surgery and recovery details. I don’t remember the majority of what was said. I was exhausted and wanted to talk to my children and my mom. After dinner with friends who had flown to Cleveland to sit with my husband through my surgery, I called my mom. She cried and said she couldn’t talk to me. She had been in a horrific auto accident the previous May and was hospitalized for 6 months. Her Parkinson’s had progressed and she was frail. The last thing I wanted was to upset her. I handed the phone to my husband. He reassured her we were at the best hospital and had the best surgeon. But it was too hard for her to talk to me because she was afraid it would be the last time she’d hear my voice. It was hard not to talk to my mom and hear her voice, but it made me even more determined to be strong. I called my children and talked to each of them. The weather in the Kansas City area was bad and my daughters had thought ahead to go to the grocery store. I was proud of them. My youngest said he was hoping for a snow day, even though I had already told him he didn’t need to go to school the following day and everyone would understand if he didn’t go. I ironed a couple of shirts for my husband before going to bed to not sleep a wink. I asked my husband with tears streaming down my face if it was okay if I prayed for a snow day for the kids. He said it was. So I prayed because if they did choose to go to school I couldn’t imagine how hard it would be for them to even begin to explain what our family was going through.

On January 7, 2010…my children called that morning to announce there was no school because of the snow. I was grateful. I followed all of the pre-surgery instructions I’d been given and watched my husband eat breakfast before we left for the hospital. As anxious as he may have been, I felt relieved. I was diagnosed with heart disease in October and three months later my heart would finally be fixed. At the hospital I was given a private room to get ready for surgery. My blood pressure was taken and it was low. My husband told them it was always low. An EKG was done and as always it came back normal. My husband held my hand and tried to tell jokes before I was taken away from him into a larger pre-surgery room. I held his hand as long as I could before I was rolled away. I had felt calm until I was parked in the next room. I lost count of the number of needles inserted into my arm and disliked the one sticking out of my neck. I started to shiver. The nurse brought me two extra blankets and I turned up the volume of my iPod. When it was finally my turn to be wheeled into surgery I asked if I could keep my iPod. I could. So I turned the volume up even more. As I watched the white walls and doors pass me in a blur I listened to IZ’s “Somewhere Over The Rainbow” and Kutless’s “What Faith Can Do” and prayed for strength. I remember when my moving bed stopped. The room was cold, the walls were white, and the lights were bright…too bright. It was a busy room filled with machines and more people than I could try to count. One of them told me to count backwards from 10…

My husband told me my surgery took seven hours. The first thing I remember when finally waking from surgery was that I hurt. My husband was smiling a big goofy smile and holding my hand. He seemed far too cheerful for how I felt at that moment. I tried to tell him that I was in pain. But the tube down my throat kept me from speaking. So I cried. And then I took my husband’s hand and wrote on his palm with my finger “P-A-I-N”. I wrote it several times before he understood. He looked around and called for the nurses. I remember him saying “My wife is in pain!” He asked if they could give me something. They said they couldn’t while I was still on the ventilator and while my blood pressure was as low as it was. My husband looked at me and said “I’m sorry.” I cried and he wiped my tears and held my hand. What I didn’t know until last year on the 3rd anniversary of my heart being mended was the reason my husband had that smile on his face. It was hard for him to remember that day because it was so painful. He finally shared more details with me because there was such a gap in my memories. What I didn’t know was that after a successful surgery I was initially given pain medication. But my blood pressure plummeted so low that my pain medication was taken away. My numbers were not good. As my blood pressure continued to drop, they brought my husband into cardiac ICU to see me and to basically tell me good-bye. They had hoped that my blood pressure would elevate without the pain medication, but it was rapidly going the wrong direction. My blood pressure was 50/30. My husband was holding my hand and wondering what he was going to tell the kids. He didn’t know how he could go home without me. And as he held my hand I scribbled on his hand with my finger over and over again. The pain finally became so severe that I opened my eyes to see my husband’s smile not knowing that he had been telling me good-bye.  

I spent five days at Cleveland Clinic following my surgery. I think I scared some of the doctors just as I had scared my family and friends. My heart was fluttering after surgery even though my blood pressure was still low but high enough that I wasn’t setting off alarms. I felt like I had a butterfly trapped in my chest. I could see the wiggly flutter lines on the heart monitor. On day 4, the day I had been expected to leave hospital, I was given a beta blocker. Within minutes I watched the wiggly lines on the heart monitor turn into a smooth strong heartbeat. It was amazing. I felt like I had finally caught my breath after months of being out of breath. If I did well that night I’d finally get to go home. Later that evening my surgeon, Dr. Pettersson, stopped in to ask how I was feeling. I told him I felt much better and said thank you. He smiled and told me he was glad I felt better. 

I returned to Kansas to recover from my surgery. That is another story in itself. My family and friends took very good care of me. Four weeks after my surgery I was feeling strong enough for an outing. A friend took me shopping and insisted I share my story at a Go Red For Women Casting Call. I told her no, but as a survivor who just happened to be in town from Iowa walked toward me she saw the scar down the center of my chest. She asked me to share my story with her. I did and at my friend’s insistence I shared it on video. I met other women that day who had their own stories to share. It was the first time since my diagnosis that someone else understood my confusion and frustration. My family could start healing and these women, these survivors, would help heal parts of me I didn’t know were broken. I wasn’t surprised to learn that I was not selected to be a National Spokesperson in 2010. I was still on pain medication and was thrilled to be out of the house that day. I don’t know what I said and ask that any copies of the tape that may be out there be destroyed. Please. But that year I worked to recover and regain my strength. It wasn’t easy and I was asked over and over again “When will you be back to normal?” I finally answered “Never.” It was the truth. I would never look in the mirror again and know myself without heart disease. I had been pulled so far out of my comfort zone that I had no more comfort zone. About two months after my surgery I found myself looking in the mirror at the scar down the center of my chest. I had never looked at it so closely because I just couldn’t. As I was looking I heard my youngest son behind me say “Mommy, I think your scar is cool.” That was the inspiration I needed to get stronger and find a new normal.

I have not forgotten my promise to my son. I connected with the Kansas City American Heart Association and met other survivors. As strange as it was to have others refer to me as a survivor, I finally realized that I truly was a survivor. I was finally processing everything I didn’t have time to process before surgery. I had felt like I had been diagnosed with an old man’s disease. But as I read more and heard more stories, I learned that heart disease was the #1 killer of women. How did I not know this? Why had I never been told this? I was not going to be quiet with all I had learned. Most heart disease was preventable and the heart disease that was not preventable could be survived if women knew the signs and symptoms. I had many signs and many symptoms and found an excuse to dismiss them all. One year and one month after my surgery I returned to the American Heart Association’s Go Red For Women Casting Call and shared my story again. This time I remember most of what I said. In the spring of 2011 I was asked to be one of 6 National Spokeswomen. I will never forget the day I met Dianne, Shermane, Eva, Jamie, and Tamara in Dallas. We laughed, we cried, and we laughed some more. Over the next few days of photo shoots and filming our stories we bonded. It was hard to imagine that I had never known these women, my Heart Sisters, before those few days. Our lives would be forever changed because we had developed a connection that could not be put into words. We didn’t have to share details about the reasons we were there. We just all knew. And we would find the words together to let others know.

Liz (far right) with Tamara, Eva and Shermaine--all National Go Red for Women Spokeswomen at a  video shoot in Dallas in May of 2011



Liz (far right) with Elizabeth Banks on the red carpet at the NYC premiere of "Just A Little Heart Attack" in September of 2011.

See Elizabeth Banks in "Just A Little Heart Attack"

Since 2011 I have been honored to share my story in newspapers, magazines, on tv and radio, and at lunch and learns and conferences across the country. It has been surreal to see myself on posters, magazine covers, billboards and in Public Service Announcements. I have been encouraged when meeting other survivors who have found a voice to share their stories as well. I have felt honored to have others share their stories with me because they finally knew they were not alone. I am grateful. I am humbled. I used to tell people “I’m just a mom.” I wondered who would ever want to know my story. I have watched my husband and my children endure heartache at the thought of losing me. They took over all of my duties hoping that they could help me feel better. I watched my husband’s heart break when he knew that he could fix almost anything, but he couldn’t fix me. And all the while I didn’t realize what a big deal I was to my family. I am a big deal and my heart is a big deal. I’m a mom and moms are a really big deal.

Tonight at dinner my now 14 year old son shared his English writing assignment with me. He ended his paper with these words: "...my mom was asked by the American Heart Association to be a national spokesperson. Now it almost seems like a blessing in disguise because now it is like she can save many lives for the price of risking her own."

My name is Liz. I am a wife, a mother, a fighter, and a survivor. Each day I am gifted it is my goal to walk out my door and inspire others to take care of themselves because they are loved and they are a big deal. Know you are loved and know that you are a very big deal.

 See Liz's National Go Red Video.

2015 National Wear Red For Women Day

If you have to be a heart attack survivor, there is nothing better than National Wear Red for Women Day!  My friends, family and coworkers came out in fierce force to wear red.  I don't wish bad health on anyone, but I wish everyone could see this day through my eyes.  It is amazing and I thank each of you.  The depth of gratitude I feel for you is unmeasurable!  Here is what I got to see yesterday:

2015 American Heart Month

This year on the eve of American Heart Month, I ponder why it is I go red.  In reality the act of having the STEMI (and being lucky enough to survive it) only lasted less than an hour from onset of my symptoms to the time I arrived in the cath lab.  I realize this time frame makes me  really lucky.  I called an ambulance and they called a STEMI alert to the hospital.  This meant the cardiac team--cardiothoracic surgeon, cardiac anesthesiologist and cardiac nurses were all waiting on me when I arrived.  What hospitals refer to as "door to balloon time" was less than 15 minutes. Truly it took just long enough for them to get me off the ambulance gurney, get me into a hospital gown and sign consent for treatment forms(and we did some of that while we were wheeling down the hall).  I knew it was bad because we were in a big rush and I could see the look on the doctors faces.  I can be kind of a smart ass so as we were rushing down the hall I reminded the anesthesiologist if he was solo on my case he couldn't leave and go to another case.  He asked me if I was a nurse and I just smiled and said no but I bill anesthesia for a living.  He shot me a smile back so I knew I was in good hands.  I like a doc that can smile and have a sense of humor when I am telling him how to do his job.  Perhaps he felt like he should cut the lady having a massive heart attack some slack.  While all of this was very unsettling, the real shock came as I started my recovery. 

I was now 42 and a STEMI survivor.  I really didn't know what that meant at first as I didn't realize the seriousness of what had happened.  I turned out not to need the anesthesiologist because they chose to place multiple stents in my LAD rather than bypass it. He hung out and we talked some and he talked me through what I could see on the monitors.  I realize now he was hanging out to make sure they didn't decide to bypass.  Because I didn't have any major surgery I was under the false impression that it must not have been as bad as they thought. It indeed was as bad as I first read on the doctor's faces.  In the days and weeks that followed, my whole frame of reference for normal started to shift.  I now was considered chronically ill, never to actually be "better".  I can't tell you what a bitter pill that was to swallow.

I started to work my way back to my new health and as I did I had a couple important revelations.  First, I realized I was not the only 42 year old woman to ever have a massive heart attack.  Second, I realized that my attitude was going to drastically affect my outcome.  As I realized these things, my purpose started to become very clear.  If I was going to survive this and I was going to now posses all this new information, I better get out and share it.

I knew about Go Red For Women prior to my heart attack and I knew it was about heart disease.  What I also so smugly knew was that it didn't apply to me because nothing like that would ever happen to me.  Of course heart disease and stroke kills 1 in 3 women every year--that is about one woman every minute.  Yes, you read that right, one woman every minute.  How arrogant was I to think that it would not be me?  As I now go out and share my story, I can see the same thing in other women.  I can see them thinking, "Wow, what a scary story. Good thing that will never happen to me." I am telling you ladies that think this that 1 in 3 die, how do you know it won't be you?  This year, this is the main reason I go red. I face the new challenge to tell my story in such a way that women don't just think it is a shocking story, but to learn to tell it in a way that makes an impact beyond shock--to make an impact of understanding that just as easily, it could be them.  It is a tall order but I never shy from a challenge.

#MyHeartSistersAreWhy

There are many other reasons that I am going red.  I am going red for my heart sisters at the American Heart Association Kansas City:

What an extraordinary group of seemingly ordinary women.  Each with a passion to educate and support one and other. 

Liz--

A Mother's Heart

Angela-

Heart Bypass Surgery: What Women Should Know

Teri--

 

What an awesome life experience to get to go red with this amazing group of ladies!

#MyLifelongFriendsAreWhy

I go red for others too.  I go red for my high school friend Michelle because her daughter was born with a heart defect.  I go red for my high school friend Jamie and his wife who suffered an unimaginable loss from heart disease.  When you start to share your story, people share back and you realize how many people heart disease and stroke have truly touched. I go red for all of the friends I have from my elementary through high school days.  Each and everyone of them special to me.

#MyCoworkersAreWhy

I go red for my co workers.  My company has supported me 100% and are going red for the third year in a row this Friday.  They have hopped on board and we have a company heart walk team every spring.  They support my efforts with the American Heart Association and I am so thankful for that!

#MyFamilyIsWhy

#MyKidsAreWhy

#MyGrandkidsAreWhy

 

 I go red for my family:

February 6 is National Wear Red for Women Day.  I invite you to GO RED with me this Friday.  Take your best selfie and let me see it!  You can tag me on Twitter @skinnybitchchro or if I know you personally, you can upload a pic to my Facebook wall.  If you know me in person, you can friend me to upload your pic to Facebook.

This is not just for ladies because the effect of heart disease on women affects the men that love them:

#GentlemenGoRedForWomen

As we celebrate American Heart Month, please remember that 80% of cardiac events and strokes are preventable--take care of your hearts!

Life Is The Special Occassion

Recently, I was talking to an acquaintance and I complimented her on the fragrance she was wearing.  She said thanks and went on to explain that she would normally save it for special occasions but she was out of her day to day scent.

I left the conversation with her thinking about all of the things that women save for special occasions.  They buy nice candles and never burn them.  They buy fancy lotions and bubble bath and it sits as decoration in the bathroom.  They buy the "good" perfume, most likely their favorite scent and rarely wear it.  They buy a rockin' dress and hot heels and the outfit sits in their closet for the special occasion. They accrue PTO at work and never use it.  They buy fine china and crystal and  never set the table with it.

When I called the ambulance and I was on my way to the hospital not only was I making work calls from the ambulance (because as luck would have it I was on call for my software company), but I was also figuring out how much PTO I would give back if I died.  Really, I was.  There is no accounting for what goes through your head when you are in an ambulance!  I vowed to myself I would start using it if I lived. 

As I have walked this journey I have come to the realization that there is no sense in waiting.  I have burned every candle in my house.  Once I burned them, I went and bought more of the good candles and burned them again. My kids bought me the perfume I love for my birthday and I wear it.  I don't have an everyday scent that is different from my "good" perfume.  I used to, but really, what was I waiting for to wear the good stuff?  Had I not survived my heart attack, all of the things I was saving would have gone unused.

I put this into practice when I bought my last car. As a usually practical person, I looked at SUV's and sedans.  All were perfectly fine except they weren't the car I wanted.  I wanted the car that had no practicality whatsoever.  As I found myself saying that I would wait until the last two kids were out of the house before I bought the car I really wanted, I stopped myself.  What was I doing?  Why was I saving the purchase for later, what if I died before then? I drive the totally impractical car and I love it!

I hear women say it all the time.  I'll save that for a special occasion, I'll use that when.....  When what?  When you can't enjoy it anymore? I'll do that when....When what?  When you are thinner?  When you are richer?  When what?   Think about when what and stop waiting for the special occasion to do or use the things.

I urge you to burn the candles while you use the fancy bubble bath.  You should wear the "good" perfume and wear the rockin' dress and hot heels. You should use your PTO if only for a staycation. By all means eat pizza on the good china and drink beer from the good crystal for the only special event you need is life.

I Got My Simple Wish for Christmas!

If you live in Kansas City, how many days has it been since we have really seen the sun?   It seriously seems like it has been a month.  As we wake up day after day to the greyness, I have been telling everyone all I want for Christmas is sunshine.  Guess what?  This morning, sunshine, southerly winds and 50 degrees for our Christmas high temperature.  This girl is on cloud nine:)  Not only that, we have passed the shortest day of the year, the days are getting longer and in about 10 weeks the temperatures will start to slowly warm to spring temps!  I love this day! 

Yesterday, I found myself out last minute shopping because my girls waited until Tuesday to mention that they wanted presents for best friends and boyfriends.  It was as bad as I envisioned it would be--I try to never get out on Christmas Eve.  My day got significantly more optimistic when we stopped at Bath and Body Works.  You see, I wear my red dress pin everywhere and it is a topic of conversation quite often.  Yesterday in the madness of last minute shopping in Lawrence, a  young University of Kansas girl said she liked my red dress pin.  She went on to explain she was in a sorority and their cause was the American Heart Association.  She said that she didn't know anything about women and heart disease until she joined her sorority. It made my heart happy to talk with this young lady and share a short version of my story with her.  It is women like her that will help us educate young women about their risks for heart disease!

Merry Christmas from my family to yours!

Our Family by the Numbers

3,243 Miles that the youngest son traveled when he returned home from Baatan, Costa Rica where he spent 27 months in the Peace Corps.

2016 the class of Jayhawk nurses that the oldest daughter will graduate in.

162 days until my side of the family gets together for the second time in 12 months after our beach reunion over the summer. That only happens once every five or six years!

60 hours a week the oldest daughter studies for that BSN from KU.

44 days until National Wear Red Day which means about 40 days of Jodi pestering everyone to wear red and send her pics on Friday February 6.

29 years Jim and Jodi and the rest of Kansas City waited to see the Royals in the World Series again--‪#‎BeRoyalKC‬

24 weeks the oldest son spent at the police academy training so that he could become a police officer.

24 students that the oldest sons wife teaches in her kindergarten class

15 years old that the middle daughter turned this year which allowed her to drive more and Jodi and Jim are no longer the taxi service!

7 days since the youngest daughter got braces with hot pink bands.

3 1/2 years old is how old the granddaughter  is. Please remember the 1/2 is very important when you are 3!
3 year heart anniversary that Jodi celebrated this year!

1 new grandson born this year

and 1 family that wishes you and yours an amazing, blessed holiday season and a fabulous 2015!

Speaking of our Royals, I managed to snag a bottle of Boulevards highly sought after #CrownTownAle and we have saved it to drink today!  Cheers to everyone!

 #thelastbottletheyhad

 

Gender Inequities in Cardiac Care-You Must Advocate for Yourself

I started this blog to work through the why of my heart attack at 42.  I started it just for me and in the beginning, I only shared it with a very small group of longtime dear friends because they wanted updates on how I was doing.   Surprisingly there is much emotion surrounding a cardiac event.  Blogging is a great way to work through this.  It also has a funny way of connecting you to others that are walking the same path as you. I found great relief when I found the blogs of Jen Thorson (My Life In Red) and Carolyn Thomas (Heart Sisters). Just knowing I wasn't alone and other women had experienced this and lived was an amazing truth to find. Still, it is a great surprise to me that people actually find my blog and read it. That I have the same impact on women that Jen and Carolyn had on me makes me smile.  I know I do because I often receive emails from women reaching out to me in an attempt to find the why in their own cardiac events.  It makes being out on the web worth it.

Not long ago, I received a particularly striking email from a woman in Georgia who had a heart attack over the summer.  She is older than me by almost 20 years and her experience really infuriated me.  She found Jen's blog and that was the first she knew of cardiac rehab.  She also said she feels  that her doctor dismisses her because she is older and therefore not that important.  She feels young and she was very put off by this treatment.  I have been sitting on this and stewing over it not sure what to write.  I find it unconscionable that in this day and age of modern medicine and technology that this kind of gender and age inequity exists.  

I was referred to cardiac rehab however my insurance would not cover it so I only went a few times. I found this to be so odd because my bill from my STEMI was about $250,000.00  That they would cover this and not the recovery and prevention of the next one leaves me scratching my head.  I work managing medical billing so I am not sure why this was so surprising to me but it was.  With all of the studies surrounding the benefits of cardiac rehab it just seems so ridiculous.

According to The American College of Cardiology, "Women with coronary artery disease who completed a 12-week cardiac rehabilitation program were two-thirds less likely to die compared to those who were not referred to the program. In addition, the mortality benefit derived from this evidence-based program appears to be much more striking in women than men with the same condition, yet referrals and attendance among women fall short, according to research being presented at the American College of Cardiology's 62nd Annual Scientific Session."( Rehab Associated with Reduced Risk of Death in Women with CAD)

The World Heart Federation states, "Despite the fact that half of the 17.3 million deaths from cardiovascular disease (CVD) each year happen in females , women are still discriminated against when it comes to the management and treatment of this disease. Women are more likely than men to be under-diagnosed and under-treated, mostly because the presentation, progression and outcomes of the disease are different and less understood in women than in men.  Although there has been progress in raising awareness about CVD in women and studying the specifics of the disease, as well as in adapting CVD treatment and care for women, the gap is still too wide." (HEART TO HEART: EXPERTS CALL FOR AN END TO GENDER BIAS IN CARDIOVASCULAR DISEASE)

A study published in The European Journal of Preventative Cardiology concludes, "CR referral remains low for all patients, but is significantly lower for women than men. Evidence-based interventions to increase referral for all patients, including women, need to be instituted. It is time to ensure broader implementation of these strategies." (Sex bias in referral of women to outpatient cardiac rehabilitation? A meta-analysis.)

According to the American Heart Association, "There is ample evidence on the proven benefits of CR/SPPs on CHD risk factors and exercise capacity.³ Moreover, recent data demonstrate that participation in CR/SPP is associated with a reduction in mortality after percutaneous coronary interventions⁴ and with a dose-dependent reduction in both mortality and recurrent MI for those patients with stable angina or patients after MI or coronary artery bypass surgery.⁵ Given the significant benefits that CR/SPPs bring to CVD prevention, every recent major evidence-based guideline from the American Heart Association (AHA) and the American College of Cardiology Foundation (ACCF) about the management and prevention of CHD provides a Class I–level recommendation (ie, procedure/treatment should be performed/administered) for referral to a CR/SPP⁶ for those patients with recent MI or acute coronary syndrome, chronic stable angina, heart failure, or after coronary artery bypass surgery or percutaneous coronary intervention. CR/SPPs are also indicated for those patients after valve surgery or cardiac transplantation.⁶

Despite the clear benefits of cardiac rehabilitation, the use of such programs remains dismally low. Of eligible patients, only 14% to 35% of heart attack survivors^7,8 and ≈31% of patients after coronary bypass grafting surgery⁷ participate in a CR/SPP. Lack of accessibility to program sites and lack of insurance coverage contribute to the vast underuse of cardiac rehabilitation services.³ Another major factor is a low patient referral rate, particularly of women, older adults, and ethnic minorities, to CR/SPP services.³ Accordingly, patients in these latter groups are the least likely to participate in cardiac rehabilitation.⁷ This is especially noteworthy because women and minorities are significantly more likely to die within 5 years after a first MI compared with white male patients.¹

The remarkably wide treatment gap between scientific evidence of the benefits of cardiac rehabilitation and clinical implementation of rehabilitation programs is unacceptable." (http://circ.ahajournals.org/content/124/25/2951.full)

Women should find it outrageous that despite the research by major well respected outlets they still receive sub-par treatment when compared to men. In my estimation, the only way to change this is for women to take their healthcare seriously and advocate on behalf of themselves. I told the woman that emailed me from Georgia to go to a different cardiologist.  Keep going to a different doctor until you find the one that will take you seriously and will provide you the level of care that you deserve.  I am on my 4th cardiologist and have finally found the one.

I was fortunate that in my situation, I called 911, had a cardiac team waiting on me when I arrived at the hospital, received very quick treatment and was referred to cardiac rehab.  I had no idea that this was not the norm until I started meeting other women who were sent home from the hospital mid heart attack.  They were sent home because they had the flu, they had pulled a back muscle, were having an asthma attack or had indigestion--anything but a heart attack. Once they finally received proper cardiac care, they aren't referred to cardiac rehab. Unimaginable!

 As a woman, you must know that heart disease is your number one killer.  You must make yourself aware of the signs and symptoms of heart attack and stroke.  You must pay attention and you must advocate for yourself when you know something isn't right. Your life may depend on it.

#BeingThankfulIsWhy

I have a list of things I am thankful for everyday.  On the top of that list is life.  Everyday, I reflect and I see things through a perspective that most people don't.  On this Thanksgiving, I have a long list.  Holidays magnify the feelings and intensify the thankfulness.

I am thankful for a core group of folks that impact my life daily and are my biggest cheerleaders!  I have celebrated another heart anniversary with them and I am ever so thankful for that!

 #BethIsWhy

 #DebIsWhy

 #MonicaIsWhy

 #TeriIsWhy

 #HighSchoolandJrHighFriendsAreWhy

#StephIsWhy

I have celebrated another birthday this year and I am thankful for it--my 46th if anyone is counting!

#BirthdaysAreWhy

I have struggled with my fitness journey and weight for many years but met a dynamic young woman who is a huge cheerleader for many including me.  I am thankful this year that she is in my life:

#AmandaIsWhy

I am thankful for my family:

 #FamilyIsWhy

 #DaughtersAreWhy

 #FinallyHomeFromThePeaceCorpsIsWhy

 #KidsAndGrandkidsAreWhy

I am thankful for the American Heart Association Kansas City.  They have afforded me great opportunities to educate and advocate.  They have given me the opportunity to meet incredible women!  Laura, Ciara and Dawn--thank you!

 #HeartSistersAreWhy

#JulieIsWhy

The American Heart and American Stroke Association asks you this year "What is your why?"  I challenge you to analyze what you are thankful for and pick your why--leave it in the comments.  

Above all else, I have chosen to do what many women have a hard time doing and this year I am thankful that in my busy life I can make myself a priority because above all else I am thankful to say:

#IAmWhy

#HappyThanksgiving!