Interviews from the Heart: Amanda DeJesus

 

Amanda was born August 23, 1988, with Congenital Heart Disease. At 14 days old she had her first surgery.

I interviewed Amanda, wanting to know her story and to share it with others who are just like us, heart-disease survivors. Here is her story….

 Amanda had to repair a VSD and a Coarctation of the Aorta.(VSD- is a hole in the wall separating the two lower chambers of the heart.) She was non-symptomatic and playing sports until the age of 13 when she needed a pacemaker implanted.

 

Amanda was diagnosed with Dilated Cardiomyopathy (Dilated Cardiomyopathy is a condition in which the heart’s ability to pump blood is decreased because the heart’s main pumping chamber, the left ventricle, is enlarged and weakened. In some cases, it prevents the heart from relaxing and filling with blood as it should.) and doctors started the conversation about a heart transplant.

Two years later she went into full heart failure, spending 3 months in the hospital undergoing extensive testing just to be placed on the transplant list.

On October 23, 2003, a man whom she calls Bob gave her the gift of life.

Having a foreign heart in your body comes with many side effects and its own set of concerns.

 

 

Seven years post-transplant, at the age of 22, her body started showing signs of rejection. After doing rounds of Chemotherapy, plasmapheresis, and steroids Amanda was able to get out of rejection. Those treatments shut down her immune system in efforts to keep her heart from going into rejection.

 

While grateful for her heart donation, she lives with sadness knowing that someone had to die to give her this opportunity at life. The limitations placed on her by her medical condition have been difficult.

 

Amanda takes over 17 pills a day and must attend medical appointments on a weekly basis. She has made many efforts to maintain a normal life. She completed high school and went on to culinary school, becoming a chef. Soon after becoming a chef she would start her own company.

What would you say has been your lowest point or biggest fear about your condition?

I would have to say my lowest point was the late onset rejection of my heart. At that point, I was 7 years post-transplant and most rejection happens within the first few years of transplant. I had graduated high school and college and was just starting my career. I went from not feeling well at work to ICU in rejection. I had no warning or signs that it was happening. So for many years post that episode of rejection I had a fear of it coming back and not being to beat it.

How do you keep yourself motivated during the difficult times?

I think about how far I come. I remember how I was told I would never do certain things again and how I prove them wrong. I was given this second chance for a reason and even on the hard days I will be ok just keep pushing.

Why is sharing your heart story with other women important to you?

It’s important for me to share my story because it shows that heart disease doesn’t have an age, race or face; whether its family history or lifestyle heart disease can affect anyone. So when I have the opportunity to share my story I hope it inspires others to go the doctor and get checked or make some better lifestyle changes they maybe weren’t making before.

What advice do you have for other women living with heart disease?

I encourage others to take care of themselves. Make sure us as women are putting ourselves first. I remind everyone to make sure they exercise daily, eat healthy and live life to the fullest. I’m all about making memories, doing things you love and making the most out of life.

Many people are not aware that heart disease is the # 1 killer of women in the US, why do you think that is?

I think most people aren’t aware because of lack of education. Most people don’t know about heart disease until it affects them or someone they know and even then don’t know all the facts. The American Heart Association and the Go Red for Women Campaign work their hardest to spread awareness and get the information out there but for some reason, it isn’t as big as say the Pink campaign for breast cancer.

What do you think you (or we) can do to raise awareness about women and heart disease?

There are so many ways but maybe start teaching it at a young age. We could also have realistic scenarios on tv shows and movies. People think a heart attack is just chest pain, tingling in their arm when you fall over but there are many different signs of a heart attack and heart disease in general that get overlooked for other things.

What has living with heart disease taught you?

I have learned that life is short and tomorrow isn’t promised. So I do what I can while I can.

What are you thankful for?

I am grateful for my organ donor. I live with sadness knowing that someone had to die to give me this opportunity at life and I don’t take that for granted. I am so thankful for this second chance. I love helping others and I know that is my purpose. I am here almost 14 years later doing what I love and trying to make a difference where I can.

As a heart disease survivor, you try to live a healthy lifestyle but you are human so what’s your guilty pleasure?

Since I am a chef and loving food as I do, I will say I have enjoyed a couple not so heart-healthy meals. I get the privilege to travel a lot and I love going to new cities and trying foods they are famous for. Sometimes those foods aren’t the healthiest but a bite or two isn’t too bad.

What do you like to do for fun?

I enjoy reading, collecting comic books, traveling and watching Pittsburg Steelers’ games.

Any final thoughts, Amanda?

I became a chef after my transplant, I was in isolation at home for 6 months. Since I was in 10th grade it left me feeling out of place among my peers but became a time to experiment in the kitchen and develop a love for cooking that I never had. By my senior year of high school, I decided to attend the Art Institute of Houston to study culinary arts. I completed an Associate Degree in Culinary Arts and also studied abroad for a semester in China.

After I graduated I started working at a local hospital, determined to make the food taste better. I would go on to start Chef with a Heart. Where I currently teach heart patients how to modify their favorite recipes, find heart-healthy foods at the grocery store and change their eating habits. I have been a personal chef to other patients suffering from heart disease. I also developed a heart-healthy cookbook and a website to help others with heart disease.

 

 

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