More Than A Conqueror
Tiara Johnson

In 2014, I married my husband and like many young adults who get married, we planned to have a child. Once we conceived, I had a normal pregnancy until the last week when my blood pressure became elevated. My OBGYN decided that the best option would be to induce. After a successful delivery, I felt something was off. I could not breathe properly, and lying down or sitting up didn’t alleviate it. I went to the local hospital, and I was told everything was fine with me and that my discomfort was a result of fluid overload. After the fluid was released from my body, I still felt like something was not right. I sought help from medical professionals from August 2015 to October 2015 without getting any assistance; I just being dismissed by physicians. 

Finally, on October 9th, 2015, I was diagnosed with end-stage heart failure. From July 31st until October 9th, my heart function had declined to less than 10%. I was immediately put into a life vest in the event I went into cardiac arrest at home. Physicians and specialists put me on a variety of medications in hopes that my heart function would recover. In June 2016, my cardiologist implanted me with an internal defibrillator, and I underwent my first open heart surgery. Following this surgery, we had hopes of my heart function returning as I was otherwise healthy before giving birth. Unfortunately, that was not the case. After three years, my cardiologist informed me that he could no longer help me and that I would need to consult with the advanced heart failure team at the University of Michigan. At this time, I met my cardiologist, Reema Hasan. She told me that, unfortunately, options were slim for me, and if my heart were to fail entirely, I was not eligible for a mechanical heart or a transplant because I was overweight.

This is where my gears shifted within me. My heart was not going to restore its function if I was not an active participant in my care. I began to do the work! I started researching heart failure, treatment options, medications, and holistic treatments. My constant thought was, “What is within my control?” I can control what I eat and do with my body every day. With imminent heart failure, I was unable to exercise, so my option was to lose weight through nutrition. I stopped eating fast food, cut out fried foods, and ate smaller portions. In February 2019, my heart went into a bad rhythm, and I was rushed to the hospital. The on-call cardiologist told me I still was not eligible for a mechanical heart even though I had lost 20lbs. At this moment, I cried out to God, asking why…. why me? It had been years, and I had not gotten better. I could barely walk from my bedroom to my bathroom, couldn’t play with my kids, and my quality of life deteriorated every day. I left the hospital against medical advice, and when I arrived home, a nurse called me and said, “I’m not calling you as a nurse; I am calling you as a mom. Tiara, you have to return to the hospital.” I cried and explained to her that I felt like a lost cause; doctors couldn’t help me. Nurse Val sent an Uber to my home, and I was once again admitted to the hospital. On the ride there, the Uber driver told me, “God said you are going to get a new heart.” At that moment, I was still hurt; however, I thanked her for her kind words and asked the holy spirit to be my comforter this second time at the hospital.

Now, a new Dr. was rounding, and she said, “Tiara, I think you would be a good candidate for a mechanical heart device.” We finally completed all the testing on March 20th, and my surgery was scheduled for March 25th. Everything went well, and I now had what’s called a LVAD. Although life looked a lot differently, I was grateful God saw fit for me to receive an LVAD. I could tolerate walking, playing, and driving again. I could cook for my family and go on outings. All with a mechanical heart coming out of my chest and the large device in my bag around my shoulders. After this experience, I began my advocacy journey, teaching others how to advocate for themselves when they aren’t receiving proper medical care. How to navigate complex medical systems and get insurance to pay for necessities. I found purpose in this journey; it revealed my calling. I spoke at numerous events, was honored at Ford Field in Detroit as a survivor of the year, and was also the honoree at the 2021 American Heart Association Heart Ball. In the midst of this all, I had gone to the transplant board three times and was denied. I began to pray to God for the right heart and at the right time, and I committed everything to Him. Little did I know that God had arranged everything in my favor. That same day, I was honored at the Heart Ball; I was listed for a transplant! I was ecstatic! I had overcome COVID, Steven Johnson syndrome, and other ailments during this time—afflictions the devil tried to use to make me doubt God and myself. I decided to make memories with my family and not worry about when the heart was coming.

Twenty days later, I got the call for a heart. My husband rushed me to the hospital, and many tests were performed. At this moment, I was not afraid or scared. There was an eerie peace in my heart. I knew God was going to take care of me. The doctors told me that the heart was coming from an IV drug user, and I began to think about what this person’s life consisted of. Did they have a family? I thought about how, even in the midst of our mess and turmoil, we still can think outside of ourselves to bless others. This person, amid their addiction, still chose to check the box on their ID application to save the lives of others in the event that they passed. My surgery went well, and I have not had any complications with my new heart. I am now two years post-transplant, and I am grateful for every moment God has blessed me with. Although I was raised in the church, I strayed away in my young adult years. This journey brought me back to God. Taught me to trust in God alone, and not doctors. There are many other hurdles, open heart surgeries, and more throughout my 7.5-year journey. It would take many more pages to explain how God has always sustained me. After healing, I went to work in detox and recovery as a way to give back to those in need and honor my heart donor. I do not know who this person was, whether a man or a woman. However, I do know that I am extremely grateful for the second and third chances at life, and I know my purpose is to serve and help my community. I pray the fire from my passion lights the torches of many and inspires them to keep going, trust GOD, and relinquish control. He knows what we need exactly when we need it, not a minute sooner!