By Jenn Fredette, Guest Blogger
“You have 5 years left to live if we don’t do the surgery” I remember those words being said like they were just said to me yesterday. Facing that reality at the age of 32 is terrifying and in that moment, life as I knew it had stopped. My life would be forever changed. The plans I had made for my future were forever gone and I was about to face a new life. A life that would have many challenges and more dark days than I care to remember, but I am a fighter and I was now in the fight of my life literally and I wasn’t going to let this disease take me down. I became a Heart Warrior and today I wear that badge proudly and with strength!
I was first diagnosed in May of 2011 after telling my PCP that I was constantly feeling tired, more than I should be and that I would occasionally get some chest pains for an unknown reason. I was sent for in depth cardiac testing and met with several cardiac doctors both in RI and in Boston. I was first diagnosed with Mitral Valve Prolapse and was told that this surgery would fix the problem. They could not guarantee me if the valve would be repaired or replaced and because of that we would not know the life prognosis until after my surgery. Repair would mean I could lead a more normal life, like before I joined the Heart Club. Replacement would mean my life would never be the same, I would not be able to have children, I would have heavy restrictions on my life. How could this be happening to me? What did I do to deserve this? I did nothing wrong, I wasn’t born with this, I just happened to catch an undetected infection from some dental work that was undiagnosed for too long. In September of 2011, at the age of 33, I had open heart surgery. The surgery proved to be successful and my doctors were able to repair my valve but it was a long and difficult surgery and my heart was worse than they originally thought. While in the hospital recovering from my surgery, I developed complications and my journey became that much more challenging. Due to the amount of time in between when I first got the infection and it been diagnosed as the root cause of my cardiac issues, my mitral valve issues caused me to develop a cardiomyopathy and low ejection fraction. A low ejection fraction can cause sudden cardiac death. Did I just go through Open Heart Surgery just to be told I was going to have a short life expectancy anyways?? That’s a hard pill to swallow when you are in the prime of your life. January of 2012 I was placed into a Life Vest, told I was being considered for a possible transplant and that I would also be facing another surgery this time to have an ICD placed. However, we would wait to see if my medication regime would help. Fast forward to June of 2012, I had met my now husband who became my strongest advocate and support person and helped me face that I was about to have another surgery. The surgery had been scheduled for later in the month of June but somewhere in between, my heart started getting better, not by a lot but enough to not have to have an ICD placed. I credit that to the meds and my support person!
In the last nine and a half years I have faced many challenges and several more hospitalizations, but I never gave up hope and kept fighting. The biggest fight was becoming a mom! It was STONGLY advised that I not get pregnant because pregnancy is tough on the heart and mine was already compromised and weak. Cardiomyopathy would make it nearly impossible for me to get through a full-term pregnancy safely. Being a Mom is the MOST important thing to me though and I couldn’t not be one. Five years of fighting and test after test, it was determined in November of 2016 that my heart could handle a pregnancy as long as I was very closely monitored. February 2017, I became pregnant and for eight months had an uneventful pregnancy. At week 36 of my pregnancy I went into Congestive Heart Failure and was induced. I gave birth to a beautiful and healthy baby girl who by all standards is my MIRACLE baby. The next few months I felt ok but by January of 2018, I started to not feel well again. Further testing revealed that the pregnancy had indeed damaged my heart even further than originally thought and I was placed once again in a life vest. However, I am happy to say that almost four years later, I am now stable and have not had any hospitalizations nor any additional set-backs. I will have to take mediations for the rest of my life and deal with other restrictions, I still have some bad days where I am fatigued but I have overcome the most challenging times of this journey and I will continue on my fight as a heart warrior. In 2011 I only had 5 years left, but this year will be 10 years. I am a mom and a wife. I AM A HEART WARRIOR and I climbed a literal mountain this past summer!
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Senior communications director for the American Heart Association in New Jersey, Lehigh Valley and Northeast PA. Dedicated to being a relentless force for a world of longer, healthier lives.