Kayla: HLHS, 22

My Name is Kayla, I was born on May 20, 1997 with Hypo-plastic Left Heart Syndrome in La Grange, Texas. I had all my surgeries at Brackenridge Children's Hospital in Austin, Texas.

I wish my parents would’ve had the technology to know about my diagnose before I was born. To give them some insight on the hardships, trials and tribulations they would be dealing with. As far as myself, I wish I would’ve had the resources to know more about my condition or have people like to me discuss it with. It would have been easier on me, by far.

Any new CHD Parent, Child, Teenager or Adult I want you to know that you are NOT alone. Do not be afraid to reach out, and ask for advice with certain situations, or just to vent about problems when you feel like no one understands what you’re going through.

For CHD Parents, my advice would be, let your kids live as normally as possible. By this I mean, unless it is necessary, do not shield them from life’s opportunities. As your child gets older, they will learn their boundaries.

Having HLHS has not caused any issues with other organs, as of recently. The only issues I really face with HLHS relating to everyday health is on and off again, numbness of my left side if I overwork my body for days or weeks at a time. I have talked to my family doctor about it, but, I will be discussing it with my cardiologist when I visit him again.

Heart wise, I am currently only taking one baby aspirin per day. Otherwise, I take Lexapro as a mood stabilizer. Being completely honest, I do not have the best diet and exercise routine like I know I should. I’m slowly trying to work my way up to that, because I know when I get things right, it will make me feel better.

Some signs of declining energy were not being able to pull 9+ hours for more than a couple days a week or lifting heavy items; if I need pull long hour shifts more than a couple days, I would be exhausted and worn out more than usual.

I do work a part-time job at a local bakery in my hometown, I have been working since I was about 15 years old. I have hopes of owning my own business one day. Over the years, I have felt my energy decline, I can’t exactly pin-point when it started occurring, but, I can feel it and notice it.

I do not really have hobbies per say, most of my down time is spent listening to music or spending time with family. Speaking of family, I have talked with my cardiologist about being able to have my own family one day; and he told me it was possible, but, it would be considered “high risk”.

I absolutely love my cardiologist. He has been with me since the very beginning, he is the one who originally diagnosed me. There is absolutely nothing I would change about the way he does things, one of my favorite things about him is, if he is talking about something I do not understand, he will take the time to explain it to me until I understand everything about it.

“By grace through faith” is one of my favorite quotes. To me this means, that if you have faith, even in the worse situations, everything will be okay. God will take care of you.

119 عرض0 تعليق

أحدث منشورات

عرض الكل
1st Generation Parents
First generation parents of complex and single ventricle congenital heart disease and defect survivors. They are the soldiers who taught us how to fight. Thank you.
Heart Caths & Warrior Blood
Heart catheterizations are a minor invasive procedure to check out hearts to see from the inside. It is comforting to be able to see a heart cath lab before you have a catherization to ease your mind. Stephanie Romer writes about her experiences.
What to Tell A CHD Child...
Keeping the innocence. How much and what should I tell my baby or child with congenital heart disease or defect. Parents, advocates, and doctors can discuss this together as well. Stephanie Romer shares her thoughts on this.
CHD Brain & ADHD
CHD Brain damage comes out in many forms - Executive Functioning issues that can look like and be diagnosed as ADHD, Learning Disabilities, Behavioral Issues, and more...Stephanie Romer writes about her experiences.
34 yr old HLHS Survivor
HLHS warrior turns 34 years old. Hypoplastic Left Heart Syndrome. Congenital heart disease survivor. Stephanie Romer's 34th Birthday - 2019.
Life with 5 CHD's
Stephanie Romer Living and loving life with five congenital heart defects. Hypoplastic Left Heart Syndrome, Transposition of the great arteries, atrial septal defect, ventricular septal defect, mitral valve stenosis
Learning Disabilities & CHD
CHD and Learning disability...Stephanie Romer writes about her experiences and thoughts.
Illness or Drug Addict
Treated like a drug addict in the Emergency Room for being young with a chronic, invisible illness. Stephanie Romer writes about her experiences.
Stress Tests
With CHD we have to go through constant testing. Stress tests is one of those. Living with Congenital Heart Disease and HLHS - Hypoplastic Left Heart Syndrome - makes it more difficult. Stephanie Romer writes about her experiences.
Oldest HLHS Survivor Making Waves
Stephanie Romer story by Project Heart living with half of a heart, twice the fight. Living with HLHS, TGA, ASD, VSD, MVS. Advice for parents and congenital heart disease and defect survivors, patients, doctors, cardiologist.
Show More

Do you have a coach to help guide you through your individual or family struggles?

Chronic Illness Coaching: 

Illness | Wellness | Trauma

  • Facebook
  • Twitter
  • YouTube
  • Instagram

Please see Terms & Conditions for all privacy policies and disclosures.