I first noticed symptoms of severe fatigue and palpitations in 2007 when I was around 21 years old. No matter how much sleep I received, most mornings while driving to work I was extremely tired, to the point that I felt like I could fall asleep behind the wheel; coffee didn’t even help. I became more worried when I started noticing palpitations for the first time. After having a “black out” moment and swerving slightly off the road, I knew something wasn’t right. In reality, I look back now and think, “why the hell would you wait so long to see a doctor?”, then I remember 21-year-old Meredith was carefree and didn’t have any anxiety at that time. I may have also procrastinated on things in my personal life, even my health.
The next day I called off from work and went to an urgent care center. At this point, no one in my family had ever had heart issues, so that never even crossed my mind. When they took my EKG, they said something was abnormal and they were going to transfer me to the hospital to be seen in the Emergency Department. Once seen, they confirmed that the EKG was abnormal and wanted to do follow-up testing on my heart. They admitted me to the observation unit, and I waited there while getting my first echo.
After receiving the results, the doctor told me everything looked okay, but he believed I may have hypertrophic cardiomyopathy (HCM). I don’t really remember him going into what HCM was, but he recommended I see my PCP. When I saw my PCP, she didn’t seem worried about my heart and placed a referral for me to get a sleep study done to see if I had sleep apnea. Once that was completed, it showed I did not have sleep apnea at all. She then sent me to Vanderbilt in Nashville, TN to see a Cardiologist. They completed more testing and stated my diagnosis was Non-Specified Chest Pain. Again, professionals didn’t seem worried, so I went back to my “normal” life, which included having major fatigue at least a few times a week, along with palpitations. It was just a new way of life for me.
Fast forward 5 years, and in 2012, my sister was diagnosed with HCM. When we heard the diagnosis of HCM, my sister said, “isn’t that what they said you had years ago?” I immediately went to look for my discharge documents. Sure enough, it showed the letters HCM. Now we were both confused and eventually told we needed to have genetic testing completed for the whole family.
Every one of our family members tested showed no known gene for HCM. I completed an Echo, and it showed my heart thickening at 14mm while my sister’s Echo showed 32mm. Again, they didn’t seem too concerned with me, and I was already overwhelmed and focused on the health of my sister. They hadn’t “officially” diagnosed me with HCM, but I was also in denial for many years because I didn’t want to believe I was sick like my sister. At that point, all focus was on her, and for years, my HCM stayed mild, and it was easy to mentally ignore it and just live my life.
In 2016, when my sister was extremely sick, we all decided it was best to move back to the suburbs of Chicago to live with our parents for additional support. We both set up appointments with an HCM specialist at Northwestern Memorial Hospital. After completing many tests, I was officially diagnosed with Non-Obstructive HCM in March of 2017. They started me on a new medication and wanted to see me every 6-12 months for follow-up visits. At the time, my sister had just received a heart transplant in February, 2017. The cardiologist told me that my HCM was mild and they didn’t expect me to ever have a transplant. I was relieved but still had many changes and symptoms at the time.
For example, I could no longer be in the sun for long, I needed water everywhere I went, I drove everywhere in case I felt lightheaded or was overheated and needed to retreat to my car to cool down. I remember sometime in 2018, my sister asked me to join her at a workout class. After 10 min, I told her I couldn’t do it anymore, and it felt like someone was squeezing my heart as tight as they could, and I was going to pass out. Managing my HCM was not an easy task, but I was good at pretending like everything was okay. This worked for a few years until 5/2021 when I tested positive for COVID. I felt awful, and things continued to go downhill from there. I ended up in heart failure and my HCM specialist tried different medications along with placing me in 2 study trials. Unfortunately, I never felt the same again. She ended up sending me to the Heart Failure (HF) clinic. To say I was shocked was an understatement! The HF team stated my HCM had become worse, and between the ischemia, an extremely low VO2, increased thickening of my heart, shortness of breath, etc., they wanted to have me complete a heart transplant evaluation in 1/2023.
By 5/2023, I was listed as a status 4 at home. My work schedule changed, and I was now working from home more often. I had every emotion you can think of, but I really tried to work on my patience. For about a year, I was either working or in my bed at home. My quality of life was getting worse over time.
On 1/29/2024, I finally received “the call”. Nine months of waiting, and I couldn’t believe it when I picked up the phone and they told me they had found the perfect heart for me! They quickly had me come straight to NM to be admitted. Honestly, I was so excited! I figured I’d wake up the next day to see my family and start my recovery. That did not happen, and I realized once I woke up 5 days later that not all heart journeys are the same. Long story short, once the transplant was completed, the HF team decided it was best to put me on ECMO due to my heart needing more support. They left my chest open for 4 days while I was on a vent, feeding tube, and many medications.
Fun fact, my sister and I are 7 years apart in birth, and coincidentally, we are 7 years apart in transplant. Both of us had our transplants at 38 years old. I’m beyond thankful for the doctors, nurses, and all staff who assisted in my surgery and recovery. I was in the hospital for only 17 days and was discharged on Valentine’s Day, 2/14/24. I could not have asked for a better support system to assist me along this journey. I’m beyond grateful for my donor and a second chance at life!