Trailblazer Of The CHD Community Stands Her Ground

Wow. Seeing this picture from 2017 is hard to look at. I can see the pain and heaviness in my eyes, my face, and my body - even though I was having fun doing my annual birthday shoot. It's hard to see myself 15 lbs heavier, swollen, sick, feeling like walking around with 25 bricks on my chest 24-7, no one being able to figure out what was wrong, different doctors wanting to do different surgeries, praying for clarity and the "right" surgery, and knowing the mental and physical pain I was living through while spending 3 years going to every doctor imaginable as I turned down countless surgeries and medications because they didn't sit right with me. So, I stood my ground and continued to wait and pray.

Finally in 2018, I met with a specialist who changed my life and I felt in my heart and gut he had the right answers. Aprox six months later I had my first and hopefully last cardiac ablation that had never been done before, he invented it specifically for my anatomy and was extremely nervous.

After 8.5 hours on the operating table, 2 days in the hospital, 3 months on bed rest, and 7 months before I was completely recovered, I finally got to feel the true results. Many people told me "don't worry it's JUST a cardiac ablation" and dismissed how terrified I was knowing how hard it is for me to recover from any type of procedure IF I even woke up from it or didn't have any severe damage because of this extremely risky surgery. I am out for weeks for a dental procedure and was out for two months at least for my last cardiac cath. Since the doctor told me recovery is aprox three months for this ablation, I figured it'd be double that for me because it always is. So, sure enough, it was.

Since January of 2019 I have truly felt 25 years old again and forgot what it felt like to feel alive - mentally and physically. I had felt myself declining for years, slowly. But for the three years prior to my cardiac ablation in 2018 I felt like a different person - I thought "this is it, this is my life...feeling like a 98 year old..." This mentally destroyed me.

But since that (hopefully final) heart surgery at least for a very very long time, I finally feel ALIVE again and since then I have been able to work on my book more, continue my advocacy work, have a job again, and actually feel like somewhat of a normal person.

My surgeon at Jacksonville Mayo who invented this new cardiac ablation for single ventricle patients while using my body as an experiment as the first to ever do this in 2018, he hopes to be able to use this in the future as an alternative to medication, especially if it works on me. And so far, it is working perfectly! I went from having thousands of PVC's a day down to maybe one or two a week. I now have PAC's every once in awhile as well but I know my triggers for the most part. He said he had never met someone more adamant about NOT being on medications and that may just be a blessing in disguise for both of us...and may have just saved my life and many to follow.

Stand your ground! Know your body and don't listen to anyone but yourself. Heal on your own time, if you rush in attempts to live up to everyone else's standards of what they think you should be doing or when they think you should be healed will get worse. Especially when it comes to heart procedures you do not want to mess around and try to rush recovery, it's very dangerous.

Being a Trailblazer isn't just about Advocacy - its about being out there and living the life, facing the fears, standing up for what feels right for my own body first, to then teach the CHD World my experiences to help you save your child or your own body from something dangerous.

Another part of my personal work as a CHD Advocate is protecting the community from doctors who don't have our best interest in mind and maybe just trying to sell prescriptions or have the "best" and "most" heart surgery ratings - ESP on rare people like single ventricle patients! Also to protect the community from unethical organizations or people out there trying to use us for money, being dishonest, or taking advantage of us in another way (as if we haven't already been through enough?) And last but not least - I was the first CHD Advocate to ever speak out about Taboo Subjects and I will always continue my work in doing that. I must say it's been amazing watching the community unfold throughout the years and each year more and more "Taboo" Subjects become less Taboo because we are finally talking about them in large numbers...which has been my goal from day one! People listen when MANY people speak on the same subjects, not just one. But hey, I never gave up and I never will.

Remember, some doctors will tell you "need" this surgery and that medication.... but what you really need is to be strong enough to say "let me think about this and get back to you" then go home and sit with yourself (and your God) and ask: is this right for ME? Then sit and listen.

Please, NEVER SETTLE and NEVER RUSH unless you need to of course. Wait. Pray. Meditate. Ask your body and your spirit. Pay attention to the feelings in your body and focus less on the anxiety and fear in your mind. I promise, you will have the best answer for you or your child.

-Stephanie Romer HLHS, 1985

2020 Pics below: Feeling very healthy and alive...Living with HLHS at 34 years old...Blindly Trailblazing my way through life while writing books and living my best life...Leaving no stone unturned...and this is just the beginning!!!