My Story

MUNCHKIN AND I

For those of you who don’t know me, my name is Molly Hemphill and I’m based out of Portland, Oregon. Helping other with cardiac-related diseases is a dream of mine, and this is my story.

Growing up, I was athletically inclined and filled with more energy than any child should have. I was constantly climbing trees, playing football with the boys and trying to skateboard downhill, leading to a pretty epic road rash up the entire back of my right leg! I was mischievous, constantly getting into trouble with the neighborhood boys and the biggest tomboy from primary through high school. I was always climbing something, including the roof of my house, my friends’ house and even the elementary school’s covered playground (sorry to my parents if you are just now learning this). How I never discovered rock climbing sooner is beyond me! Throughout all of this, I used to get weird feelings in my chest, which I could only describe as both dull and sharp aches; like my heart was being stabbed. At times, I felt out of breath, and like my heart was skipping beats, or stopping altogether. My resting heart rate was always faster than everyone I knew, yet doctors shrugged it off, simply stating they believed it was exercise induced asthma, hypoglycemia and possibly even teenage hormones. I continued fighting through my symptoms as I became a young adult, and pursued a career in ballet.

Shortly after having my son at 23 years old, symptoms became worse. One day at my son’s doctor appointment, it was apparent I was struggling a bit with palpitations and his doctor asked to listen to my heart. “I hear a click”, he said, “something is wrong”. I scheduled an appointment with my general practitioner and upon him listening to my heart, said, “I don’t think anything is wrong”. Being a stubborn woman, I jumped on my computer, Googled a cardiologist in Portland and made my own appointment (without a referral). Turns out, he was a new cardiologist in town and I was his first patient. “Oh yes, there is definitely a click”, he said the first moment he listened to my heart. At this point, we scheduled an MRI of my heart, echocardiogram and EKG. We learned I had structural issues with my heart; Pulmonary valve regurgitation, a right bundle branch block, enlarged right ventricle and higher volumes than I should. I underwent a Transesophageal Echocardiogram (where a camera is placed down my throat to capture better images of my right/left atrium) and a catheterization to perform additional tests on my heart. With this procedure, an electrical node is placed through the femoral artery in my leg and slowly laced up through various arteries until reaching its final destination in my heart. My cardiologist found some concerning things, but I appeared stable, was given beta blockers and scheduled to come back in one year.

In February 2010, my entire life changed. I woke up one night with a pounding in my chest; it was my heart. I tried ignoring it and going back to sleep, but it wouldn’t go away. I walked downstairs and checked my pulse; 180bpm. I placed an icepack on my chest, not knowing what was happening and tried calming myself. After one hour, my heart rate was still a pounding force, and I decided to go to the hospital. I first dropped my son off at my parents’ house (at 3am), then drove 20 minutes back to the hospital in Portland. The moment I got there and my vitals were taken, I was rushed to a room in the back. So many people were running around and I had no idea what was going on. A doctor told me, “You are having a dangerous rhythm. You are in in SVT, Supraventricular Tachycardia”. Majoring in Molecular Microbiology at the time, I understood the terminology and what was about to happen. The doctor came in with something I had never seen before; adenosine. An IV was placed into my arm and 6mg of Adenosine was pumped into my veins; An intense pain came across my forehead, chest, down my left arm, then legs, and finally right arm. I remember letting out a moan as I felt like I was dying. My vision began to disappear and my heart stopped. When my heart started beating again, my heart rate was still 180bpm and I was in more danger of heart failure. I was then given 12mg of adenosine and went through the same ordeal again. My heart stopped beating one more time and I collapsed in the chair. My heart began beating again, but I was still stuck in a dangerous rhythm. Cardiac arrest and the inability to resuscitate me was very real and more drastic measures needed to be taken. Finally, the doctor called a nurse in who had a piece of paper for me to sign. It was a consent to treat via defibrillation, with an understanding that I may die if I allow them to do this. I burst into tears, having just dropped my son off, knowing that may be the last time we would get to see one another. I was only 24 years old. I looked at the doctor and said, “Am I going to die? I don’t know what to do”. He sat down next to me, explained that he believed this would work, but there was a chance I wouldn’t make it. There was a chance this could make my arrhythmia worse and I would not be resuscitated. It was my only option to survive, so I signed the form, asked my son’s Dad to leave the room and not notify my parents until after, when the staff was able to inform him of whether I made it. I was given Propofol to put me under for the cardioversion; my vision blurred to nothing and hearing faded. Some time had passed, I woke up, realized I had made it and my heart rate was back to normal. The medical staff left my ER room as I sat there, thinking about what had just happened. Within 15 minutes, my arrhythmia started again. Understanding that the cardioversion would not work again, I was given fast acting beta blockers via an IV, and admitted to the hospital. A blood panel was performed, and an ablation scheduled for the next day. As I remained stable overnight and through the morning, we learned that my blood panel was off; my thyroid was overactive, and I was in a thyroid storm. A thyroid storm is a rare, life threatening condition, with a high mortality rate of 50-90% for patients with my condition. Thyrotoxicosis, although a horrible experience, uncovered electrical issues with my heart that doctors were unaware of until that point in time. A full thyroidectomy was scheduled 30 days later, as I was given high dosages of beta blockers each day to slow my heart and metabolism. At 5’10”, I dropped down to 115 pounds due to my body attacking itself and destroying almost all muscle in my body. A full thyroidectomy was performed and I was notified after the cell analysis that cancerous cells were found. Everything was removed and I was now required to take synthetic thyroid medication daily, along with beta blockers to control heart rate for inappropriate sinus node tachycardia.

Over the next year, my days were filled with sleepless nights, constant sickness, anxiety and fearing of the beating of my own heart. Just three days after my full thyroidectomy, I was admitted to the hospital for another four days, as my calcium levels had dropped to the point that I was diagnosed with Hypocalcemia. Each joint in my arms stiffened and I was unable to use my hands, arms and do anything myself without an IV. I had spasms in both my arms and legs, which left me stiff as a board and in immense pain from my body contorting in ways that I didn’t know was possible. This went on for days and my heart continued to be monitored to prevent cardiac arrest. To this day, I cannot bring myself to listen to my heart rate on a monitor. The sound is all too familiar and takes me back to a place I never want to go back to. After this stint in the hospital, every night I went to bed, I would wake up with a racing heart and wouldn’t fall asleep after that. There were at least two nights per week for about one year when I just wouldn’t fall asleep. I tried living life, but couldn’t. I continued going to work, school and being a mom. Most of my days were spent on a couch, or playing on the ground with my young son. Some days, after no sleep, I would drop my son off at daycare, then go to my parents’ house, crawl into their bed and sleep for a couple hours. There was something comforting about being back home with people I trusted. Slowly, I tried living life again, but was unable to without the use of anti-anxiety medication. I was afraid that my heart would stop beating while I was out alone somewhere. I couldn’t sleep alone in my house, constantly needed someone around, and I was no longer the vivacious, outgoing athlete that I was before this happened. I had changed and was a shell of the person I once was. My heart was never normal again after this. However, one thing I still had was hope. I wanted to live life again. I wanted to show my son the world and not be sick at home. I needed to make it through this. Throughout those two years, I wasn’t strong enough to even walk a flight of stairs, let alone around the block. One night, I sat on my bed alone, closed my eyes and prayed, “God, I don’t see the light at the end of the tunnel, but I know it has to be there. I know this can’t be where this ends for me”. As I continued pleading to God, my hope was restored and I knew I had to fight. I promised God that if I could just be healthy again, that I would live life the right way and with a purpose to help others. Every night after that, I said the same prayer; nothing changed. I was still sick, miserable, but put a smile on my face every day. I trusted life wouldn’t always be this way and chose to praise God in the storm, just like Job in the Bible. This is a man whose health was destroyed and he remained faithful to God. Through his suffering, he lost many people in his life, just as I did. I felt alone, but knew I could make it if I just kept holding on. In 2012, the last nail in my coffin occurred when a final ablation was scheduled to fix the arrhythmia in my heart, creating the constant fast heart rate. I was awake for half of the procedure and upon waking up, the doctor said, “This wasn’t successful”. I was in shock. I closed my eyes, went back to sleep and was wakened by the doctor being back in my room. I asked again, “Was this successful?”. He said, “You don’t remember? This wasn’t successful”. I completely broke down at this point, realizing it was my last chance to live. The only thing that could be done was a daily calcium channel blocker to control my symptoms. The only medication known to work was not approved by the FDA and only available in the UK. I had to accept what was available and hope it would work. I couldn’t continue living life with an arrhythmia every day.  Slowly, they went away. Each day was another baby step toward recovery.

My life began improving and I started rehabilitating myself in 2013. At this point, a lot of damage was done to my heart, and I was given so many limitations. I should avoid running, excessive cardiac output and live a more sedentary lifestyle. I accepted my modified lifestyle and in 2014, when my storm was over, all the remained was my son, parents and grandma. I had weathered my storm, but almost everyone around me had vanished. I had lost every friend, sibling, my husband and even myself. Looking back, it was probably extremely difficult for people in my life to see me as a carefree individual one day, then a shell of someone they knew the next. My friends and siblings stopped checking on me after a few months in; they had their own lives to live and what I was going through was probably too much for them to see. I lost my identity and didn’t know who I was or what I believed in anymore. I was a changed person, very different than who I had been before. I had no desire to go to the pub with friends, camp multiple times per year, or attend country concerts. I stopped having the desire to drink alcohol socially, and continue to avoid it due to health reasons for my heart. As an adult, drinking is a very social activity, so I just stopped fitting into so many circles. I also wanted more from life than going out with people who just wanted to get drunk. I wanted to live, see the world, be strong and find myself on top of a mountain with the best view of God’s creation. I started devoting more time to slowly working out, taking my son with me and finding hikes. It was a lot for the people closest to me, as they just didn’t understand me anymore. I had turned into what some (and most around me) called a “hippy”. Divorce was just the final step for me. In 2014, we both knew it was over. My husband at the time lost the person he had known for the seven years prior to me becoming sick. I needed a partner; someone who wanted to experience life with me and travel. I needed someone to live each moment in time with me, each sunrise and sunset, and encourage my health and wellness. We were on different paths and he couldn’t join me in this journey. I think it was hard for him to come to this conclusion, and when he did, rather than trying to force myself into the life he wanted, I made the final decision to pursue this path on my own. We now successfully co-parent our amazing son and work together every day to provide him with all the love in the world.

Throughout this process, I leaned so much on God and got to know Him in a way I had never been privy to before. I knew I needed to figure out who I was and start living life again for myself and my son. I wasn’t where I wanted to be, but was in a better place than those nights when I pleaded with God to save me. I didn’t remember what being healthy was like, and was afraid to live. I wanted to constantly protect myself from anything that could hurt me. This included running, dancing, hiking and even people. I was so afraid of people hurting me that I kept my head down, didn’t attempt to make new friends, or be the outgoing individual that I had been. What was the point in making friends again if they would just leave when things got hard, right?  There was also an intense fear that if I let anyone get close, I could hurt them if I get sick again. I wanted to protect people in my life from getting too close, so that no one would ever have to be a care giver or subject to seeing me hooked up to various machines and IVs in a hospital each week. Abandonment is something that is a deep-rooted struggle for me.

My life changed once again completely in April 2015. I saw photos of the outdoors and something happened; I felt a fire in my soul. It was a feeling I recognized, but because it had been so long, I was left speechless. Seeing these beautiful landscapes and locations, I knew I had to see this with my own eyes. How would I do this? Where would I even start? My doctors keep telling me I’m sick. I have so many limitations. In that moment, I stopped putting constraints on myself. I was told my heart was so damaged from what I had gone through that valve replacement would be needed in less than 10 years, and who knows what after that. So much was against me, but I had hope. I started going on solo hikes, where I was forced to feel my heart beat sharply against my chest. I stopped constantly, would catch my breath and keep moving. The first summit I reached was Spencer Butte in Eugene, Oregon. I remember seeing everything at sunrise and crying; I made it! I found solace in the silence. I found solace in the beating of my heart. No matter how hard it was beating, it was okay because it was still beating. My heart was beating for a reason, and the joy I felt was my compass pointing directly North. This is the path I should be on. After 2015, I pushed myself harder against doctors’ orders and continued to increase intensity of my workouts. By 2016, I was rock climbing, bouldering and doing hikes rated as “difficult”. As of my last cardiology appointment, I was told “You’re supposed to be sick!”. Even my doctors had given up hope. However, I didn’t. My condition improved, but was told “You can’t outrun heart disease”.  Leaving my doctor completely confused, I asked for permission to do more. I want to run seven miles, do multi-pitch outdoor climbs, and even get on American Ninja Warrior! My cardiologist looked at me with such confusion as in “who are you?!” He again told me he didn’t understand my desire to rock climb, and explained once more that I can’t beat this disease. I think he was trying to convince himself more than me that I was still sick. Here is the thing, I am still sick and always will be. However, I am capable of more than being the girl with the sick heart. I increased my training even more and am now in the best shape of my life. I have more muscle than I have ever had, my lung capacity is greater than it was when I was a kid and I am not even done! Doctors may be right – I can’t outrun heart disease… maybe I can just out climb it! Rock climbing, hiking outdoors and loving nature saved my life and gave me a second chance. Through this journey, I lost everyone and gained so much. I have an amazing son, a partner who understand loves and encourages me, and a great group of climbing friends who push me every day. I keep up with the healthy kids, and at some point, will surpass them. Not so bad for a girl with heart disease, right? I am no different than anyone else with this illness. I had the heart to fight when there was nothing left and did just that. I still have days that knock me down and turn me back into that girl sitting on the bed, pleading to God. The difference is that those moments last a mere minute versus days, months or even years. I have worked too hard to get where I am and refuse to lose this life. I still have heart palpitations weekly and times when my arrhythmia kicks in, creating a rapid heart rate, followed by almost flat lining. I still wake up late at night for no reason, heart racing and scared that 2010 is happening all over again. The fear never fully goes away. Instead, you learn to live with the fear, accept it, embrace it, and live each moment of life like it’s your last. Your fear turns into being thankful, because it becomes obvious that you are not where you were; you are healthy and everything will be okay.

Today, I have a passion for life and could not imagine it being anything other than what it is. I am always smiling, laughing, joking, and probably being goofier than anyone 32-year-old should ever be. I have the heart of a child, find wonder in the small things and am in love with life. My son is my favorite hiking/climbing buddy and he has the same stoke in his heart for life as I do. I also met someone; that’s right, the girl who blocked everyone out of her life, found someone that is completely amazing. I found my partner, best friend, and love of my life. I met someone who truly understands who I am, where I was and who I want to be. I receive daily encouragement, love, and understanding from him. I have a great community of friends of all diverse backgrounds and am even more outgoing and energetic than I have ever been. I am so blessed. Being sick was the worst and best thing that happened to me. I went through something that broke me down to nothing, but built me up into the strong, healthy, loving and joyful person I am today. At this point in my life, I would not change anything. I needed to get sick to realize what I want from life. Today, I get to show my son the world and teach him how to enjoy the little moments in life, without ever having to go through what I did. For the first time in my life, I trust myself, my health and my heart. I trust that the people in my life will always be there for me, and that there is no need to build walls. Letting people who love me into my life has been such a freeing experience.

I am now fulfilling the promise I made by creating this site. I want everyone who is sick, scared and shattered from heart disease to come here. I want to show how the outdoors can save your life too. I want you to find solace in the silence and the beating of your own heart. I want you to have hope and find adventure. No matter if you are currently the person pleading for life on your bed, or the one who has already started hiking, we will have adventures here to fit what you need. I hope this helps you find that stoke for life. Our broken pieces in life become our strongest attributes.  Don’t give up, because I promise you are not alone. This is the trailhead for the rest of your life, and nothing will stop you. You are worth the fight.

Sincerely,

Molly Hemphill

 

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