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Stephanie Voakes: TGA, TA, 41

Hi My names is Stephanie Voakes. I was born on November 13, 1978, without a spleen (asplenia), and congenital heart disease consisting of multiple heart defects (CHD), including L-transposition of the great arteries, tricuspid atresia, pulmonary stenosis, atrial septal defect, right aortic arch and cyanosis (low oxygen in the blood causing a bluish tinge to the skin and nail beds and lips.) Besides having 4 cardiac catheters and going through so many tests, that I've lost count, I've also had 3 surgeries: Left Blalock Shunt at 6 months old, Glenn Shunt at the age of 10, followed by a Modified Fontan at age 14. I've recovered from 3 transient ischemic attacks (mini strokes), the first one occurring at age 18. Just before Christmas 2013, I received news that my left lung is partially deteriorated because of a shunt failure. One of the shunts had begun to pull away from the heart allowing oxygenated blood going to the lungs to leak, leaving my left lung 60% deteriorated. So I went through more tests and in March 2014, it was discovered that there was a hole in the heart. In June 2014, via catheter, the hole was located in the Fontan but could not be repaired at that time. In October 2014, the hole was repaired via catheter. They were able to plug the multiples tears/holes in my heart with a balloon-like device. I’m now on oxygen as needed. I don’t use it all of the time, only upon exertion or days that I’m struggle to breathe on my own.

Everything seems to be fine now and heart and lungs are stable. Currently I am “heart healthy”. I’m fortunate to only be on baby aspirin daily to help thin the blood. I currently do not take any other medications for my heart and I don’t have a special diet. My cardiologists and specialists have been fantastic. Any questions that my mom or I had were always answered and explained in a manner that we could understand, not in “doctor speak” lol.

I’m pretty sedentary due to lack of energy and stamina, however, I do enjoy doing yoga when I’m able. Of course the routine is modified so that I can do it but I find it is better than not doing anything physical. I can’t walk for exercise as often as I’d like because of the lung issues now, I get out of breath to easily. I cannot work because of my lack of energy. I’m lucky to get through the day without having to take a nap to re-energize. My life is pretty routine, get up, deal with the dogs and do what needs to be done around the house such as cleaning and cooking dinner. I couldn’t have children because of my heart issues, so I give my love to my fur-babies!

My energy has always been low, I struggle most day to accomplish regular activities, I get drained very quickly. I enjoy doing yoga when I have the energy, it’s calming and peaceful to me. As mentioned before, of course every routine is modified so that I can do it and not struggle too hard physically, but I figure that doing even a little is better than nothing.

I currently volunteer my time as secretary of the Heart Defects Society of Windsor and Essex County, a local charity aimed to give support financially and emotionally to those affected by CHD. I enjoy playing video games, it helps pass the time. I have a large collection of crystals/gemstones.

I grew up with one (heart healthy) sister who is 3 years younger than I am. I was told that I could never have kids, but I had always wanted to be a mother, after having three miscarriages and the state of my health, I chose to give up on ever having my own family.

There are so many cliche sayings about being strong and surviving the life you were given. I get angry with those kind of sayings, especially when someone healthy says it to me. How about you live this life and see how thankful you are to have it. CHD robbed me of having a family, it robbed me of having a normal life and is still doing so. I’m a bit bitter with the fact that I have to live this life. Yes, I’m thankful for every day that I’m blessed with, but it doesn’t take away the pain and struggles I go through daily.

I was often made fun of and would come home from school crying on a regular basis due to the teasing, because I had "purple lips." I missed a significant amount of school due to tests and surgeries, but managed to pass all of my classes. And if I thought grade school was tough, high school was much harder as now there was a whole other larger group of kids to ruthlessly tease me.

I fell into depression because of this, and became suicidal. My mom, who is my rock, gave me a wake-up call, and I remember to this day, what she said to me. She said "You are stronger than them, stronger than their ignorance and that I didn't try all these years to keep you alive for you to give up on yourself, you've made it so far, keep going..."

My advice to heart parents would be to just be there for your warrior. Have empathy when they are struggling. As a heart warrior I just want to remind you that as a child, saying “I’m tired”, may be an often occurrence as they may not be able to communicate that they are weak or have no energy, they just feel “tired”. Let them rest and try to regather some of their strength. Things that you take for granted can easily drain a CHDer, or cause chest pains. And as much as you want to shelter them from everything, you must let them learn their own boundaries. Our bodies will let us know when it becomes too much.

Growing up in a small town, I was the only one with CHD, no one knew what it was. I wish there had been more of a support system for our family. I wished there were other kids like me, someone I could bond with that understood the fragility, the lack of energy but wanting to play. It wasn’t till I was about 10 years old that we did find a local group that helped us cope with what we’re going through. But that group seemed to dissipate fairly quickly and I didn’t find another group until 2009, I walked into a Canadian Tire and Francine (RIP zipper sister) was selling tickets to a pasta fundraiser for CHD’s. I was so excited to see someone else my age with just as many issues. She had blue lips too! We bonded and she was one of the founders that started the Heart Defects Society of Windsor and Essex County. The charity I am now secretary of. I’ve met quite a few local families through this organization and am very proud to be able to help them.

I admit some days I’m a great advocate for CHD and other days I’m resentful, I feel that this life is unfair and want to have nothing to do with it, don’t want the reminder (as if I could forget). But no matter what I will always be there for anyone that wants to talk. No one should have to go through this alone, this is why I'm thankful for CHD Legacy because this is exactly what they are about, and they allow us to speak out without hiding anything.

It’s hard though, bonding with other CHDers. You get to know some of them, you bond over similar experiences, can understand the ones you haven’t endured and the next thing you know, they’re gone. I’ve lost four close “cardiac buddies” as I call them. Scott, Francine, Ashleigh, Finley. I think of them often. Rest in peace. I know you all have pink lips and are running through the divine without having to stop to catch your breath!! I miss you.

Honestly I think I’ve blocked out most of my childhood because of the trauma attached to it. I don’t want to remember the teasing, missing out on things because I couldn’t keep up. I don’t want to remember the rage issues I had/have because I couldn’t/can’t cope with my life with CHD’s. I know they’re there, buried somewhere and that’s where I’m going to leave them. It’s not something I share openly. If you want to get under the tip of the iceberg feel free to reach out to me. Please put CHD in subject line.

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