Saturday, February 1, 2014

A Mother's Heart

Today marks the beginning of American Heart Month and I am so honored to kick it off with Liz's story.  I met Liz at my first Go Red Ambassador meeting and she is an amazing woman that I am so lucky to have met. You would never look at Liz and know she has heart disease, yet she does.  She inspires me and it is my greatest hope that you leave my blog today just as inspired!

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: " 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.

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