What do you think of when you think of a Survivor? I usually think of someone who has battled cancer, survived a heart attack or survived a stroke. I have realized I am a Survivor! I have beat heart disease and have been given a second chance at life.
My name is Savannah Conley. I am 34 years old and I live in Alamo, TN. My family has a strong genetic history of hypertrophic cardiomyopathy. This disease causes the heart muscle to become enlarged. This can cause many problems within the heart, such as arrhythmias and sudden death.
My grandmother, aunt, and my mother all had hypertrophic cardiomyopathy. My aunt died at age 14 from sudden cardiac arrest from strenuous physical activity. My grandmother was diagnosed in her 30’s and died at age 52 during her heart transplant surgery. Years of having pulmonary hypertension from the heart disease, damaged her lungs to the point where she needed a lung transplant also. Additionally, my mother was born with the disease, but at the time the doctors did not know what it was until she was around age 10. My mother is also a Survivor of this disease. She had a heart transplant when she was 31 years old and is currently on her 22nd year with her new heart. She is continuing to do well. Having her by my side on my journey has been such a blessing!
Genetic research has played an important role in my journey and I am so thankful for it. After getting married, my doctors and I decided that I needed to have genetic testing done to see if they could determine what gene this disease presents on. The genetic testing was a success in showing what genes my heart disease was on. Knowing what gene hypertrophic cardiomyopathy presents on allowed other family members to be tested to see if they have this disease. In recent years, my aunt and great aunt both found out they had the genes. They are both doing well and are followed closely by their doctors. After my daughter was born in 2009, we had her tested for these genes. Results were that she did not have any of the genes for hypertrophic cardiomyopathy! What a miracle and relief to me!! I did not have to worry constantly if she had the disease or not. I knew then that I could endure anything because the disease stopped with me.
Now on to my story. I was diagnosed at age 10, after having an echocardiogram (ultrasound of the heart) every year. After being diagnosed, I was unable to participate in sports or any strenuous activities. I was able to have a normal childhood and adapted to my life with heart disease as best as I could. Was it hard and scary at times? Yes, but I had God on my side and a wonderful, supportive family. I made it through many years without any trouble. My doctors did suggest I have a pacemaker/defibrillator (thanks to American Heart Association research) put in to prevent any dangerous arrhythmias. I did not start having trouble until I reached my 30’s. I went in and out of atrial fibrillation, which is common with this disease. I was very symptomatic with it. My heart would beat out of my chest and I would feel short of breath even at rest. They had me on medication to help my heart not go into this rhythm, but it didn’t always work. I also was on coumadin to prevent any blood clots. I went into this rhythm three years ago and they could not shock me out of it. My blood was too thick at one point and another time I had a clot in the appendage of my heart. After being in atrial fibrillation for so long my ejection fraction of my heart significantly declined. It declined so much that my cardiologist wanted me to be placed on the heart transplant list. After many tests I was listed on the transplant list as a level 2 (lowest level) My condition was managed with medications and I had an AV node ablation, which put my pacemaker in charge of the electrical part of my heart. I was on the heart transplant list for 3 years.
I remember the day I received the call for my new heart like it was yesterday. I had just picked my daughter up from horse riding lessons. We were headed home to pack for our beach trip with my mom and aunt the following day. The call came while I was driving, so I immediately pulled over. I had to somewhat hold myself together because I had my daughter in the back seat and she was getting concerned. The nurse on the phone told me they had a heart for me and that it was a perfect match. I remember being so scared and wondering what in the world am I supposed to do. I was told I could let it all sink in and call them back.
I dropped my daughter off at her grandmothers and I drove to my husband’s work. I was in such shock and hysteria because I was so scared. Talking to my husband and my mom helped me calm down and realize that I needed to take this second chance at life. I knew I would take the new heart but in the moment, you are just so surprised and scared. I know it was in God’s plan. Level 2’s hardly ever get new hearts. They must be moved down the list to a 1a or 1b. Everything just fell into place. My mom was off work for a week and my aunt was already on her way to Tennessee.
So After calling the nurse back and accepting the new heart, I packed my bags and we headed for Nashville for the beginning of my journey. I was so nervous the whole way to Nashville and even once I arrived. I drew on my faith and relied on the One I knew would pull me through this. Recovery wasn’t the easiest obstacle, but I pulled through with lots of prayers and support from people from my hometown and even people I did not know. I am truly blessed, and I will never forget this experience or the amount of people that reached out to me or just said a prayer for me!!
I am doing great. I am enjoying life and living it to the fullest. I am soaking up every moment I have with my daughter. I am exercising and running some, which are two things I have not been able to do before!!
There are some days I am tired, or I am just a little down, but I just rest or do what I think my body needs and move on. I can get through anything with God by my side. I know he has great plans for me. I am so thankful for my opportunity to share my story.
I am a Survivor!! I am a Survivor because of research. I am a Survivor because The American Heart Association funds research. I am a Survivor because people donate to The American Heart Association. I am a Survivor!!
by Savannah Conley