Nicki

Hi, my name is Niki. To tell you my transplant story I have to start at the beginning of my life. I was born in August of 1986, in Killeen Texas. When I was born I was presumed to be a healthy baby. When the doctor came in to give me my going home physical, the doctor heard a murmur. They then drew blood gases, because my color was going blue. My blood gases were not normal. The hospital I was born at was not equipped to deal with a baby that had a possible heart issue. I was then flown to Fort Sam Huston and had my first heart cath. From that Cath I got my diagnosis with transposition of the great vessels. 

In 1989, at almost 3, I have my first open heart surgery, Mortified Fontan, done at Kosair’s Children’s Hospital. During childhood I did well. Once I hit my mid teens I started having a lot of issues with undiagnosed rhythm, the doctors could never find it. I would pass out, get dizzy, had low blood pressure, and could not do what I was once able to.

After several years of chasing this rhythm, it was caught when I lived in Georgia in 2018. I had my second open heart surgery in 2018. This was some reconstructing to cut some muscles away from my coronary artery. Some of my heart muscle was squeezing my coronary artery when I was doing any activity and it was believed that is what was causing the V-Tach. I also had a pacemaker/defibrillator placed. That seemed to “fix” the issue, until August of that same year. I started declining rapidly. I had an ablation in early 2019, which did not stop the V-Tach. I was then told by my doctor that it was now quality of time and not quantity of time.

I left Georgia to go back home to my family in Kentucky. I started going to Vanderbilt, hoping since I had tried Kentucky, and Georgia with no answers, I would find some there. March of 2019 was my first appointment with a congenital cardiologist. That cardiologist told me it was time to talk about transplant, which scared me so much. May of 2019 I met with the transplant team to see if I would even qualify for the assessment. I was sick enough to do the 3 day assessment but healthy enough for a transplant and could be listed for one.

June 17th 2019 I came to the hospital for my first test, a heart Cath. I found out I was in heart failure and was too sick to be discharged from the hospital, I would be there until I died or received a transplant.

Over the next few days they did the remaining test to determine if I am a candidate for transplant. The following week, I was listed as status 2.  I think I was in the ICU 3 days when my team came in to tell me they found a heart and I would be going to the OR around midnight, June 17th 2019.

That night I received my gift of life! I am 5 years and 6 months out from transplant and so grateful. If it was not for my donor I would not be here. I am living my best life, back in college, married, and just living life to the fullest every day! For my English 2 class in college I did all of my papers on organ donations and why we need more. I am so passionate about sharing my story and trying to increase the number of donors.