My name is Kristin Heyza and I am 29 years old. I have congenital heart disease with a diagnosis of single ventricle, transposition of the great arteries, dextrocardia, tricuspid atresia, pulmonary stenosis, ASD and VSD. I am also pacemaker dependent.
My first three open heart surgeries was performed at Children’s Hospital of Wisconsin in Milwaukee before the age of six. Most recently in October 2017, I had a fourth open heart surgery at CS Mott Children’s Hospital in Ann Arbor, MI. My cardiologist, Dr. Mark Norris, was keeping an eye on a narrowing valve that was slowly closing. When I went for my regular check up in May 2017, Dr. Norris told me of my need for another surgery and that there was a significant chance that I would come out of that surgery with a pacemaker placed. Over the years, I have struggled with some SVT episodes.
Every two years, my liver is checked because it has been discovered that Fontan surgery patients run into liver issues. I have also developed low platelets and am being followed by a hematologist at U of M Hospital. I have really struggled also with right sided back, chest and shoulder pain for years because of these surgeries and it only intensified after the fourth surgery. Trying to find relief for that pain, I went to see an amazing chiropractor and acupuncturist, Drs. Nate and Shannon Mckee, who do cupping and who have helped me in so many ways to manage the severe pain that I have in my shoulder.
Currently, I train at the gym 5-6 days a week. My workouts include every type of weight training and cardio. I worked my way up to actually being able to keep up with most “heart” healthy people. There was a noted change in how my body reacted to training after my last open heart surgery. It has been hard to get where I am and I am not even close to where I want to be. In September 2018, one year post surgery, I competed in a UFE Bikini Model Competition. Through that process, I became a fairly clean eater. The prep was rough, however my cardiologist gave me the all clear to compete and overall it was a very rewarding experience and I am looking forward to competing again this coming September.
During my workouts, I often listen to a motivational speaker, Inky Johnson. One thing, he keeps saying that really resonates with me is “the process is more important than the product.“ Not everyone will get to the same place, but everyone goes through the process and learns lessons that can be applied to the rest of their life.
It is really how you conduct yourself during the process of trials that the greatest lessons are learned. Fears can often overwhelm and hold you back. It is developing a day by day approach in conquering them. Grief also comes into play.
There is a sense of loss for me as I realize I am different from others and that I live with limitations. I must face each day with courage. Taking those lessons that I have learned and showing a compassion for others who gave the same is so important. It is a community of heart patients, family, and friends that need to reach out to each other and encourage as needed. In my case, I chose to seek out help of a therapist, Stacie, who has helped me tremendously deal with all that goes along with having open heart surgery and living my life. Truth be told, anxiety and depression have been present for as long as I can remember, however markedly worse since my last surgery. I believe some of the contributing factors to my anxiety and depression have to deal with the healing process, not knowing or understanding how the recovery process was going be so long and complicated, and the chronic pain that is present every day. The physical scars have healed way sooner but the emotional healing continues on. I am thankful that there is becoming a greater awareness of the “emotional” healing that is necessary for congenital heart patients and that it is a very real, guarded and protected space for those of us who struggle.
It took a long time for me to find a cardiologist that I trusted. Dr. Mark Norris knows how to reassure me when I am down, listens to my fears and frustrations and, overall, I feel as if I am his only patient. His confidence and honesty have reassured me on many occasions and I could not imagine going through my heart care without him. It solidifies the importance to me to have a community of support to face the challenges that will come.
Facebook: Kristin Renae Heyza