Danielle: COA, 40

Danielle's Courageous Journey

A story of one girl's journey with CHD

When I look back at my diagnosis and list of everything I have been through medically, I think, “Wow! I went through all that and I am still alive and well?”

It is amazing what medical technology can do today. I am very grateful that it exists along with all the medical professionals who are working hard to provide good healthcare so that I can still be here today and hopefully live a full and long life. Without the medical technology and medical professionals, I would not be here today.

Who am I? Just a girl from Chicago, Illinois. My diagnosis? Born with Coarctation of the Aorta, bicuspid Aortic valve, VSD and ASD back in 1979.

I have had four open heart surgeries to correct the defects. Three of my surgeries were at Rush and one at Loyola. I had my defibrillator procedure at Edward Hospital and two ablations at Loyola. I also survived bacterial endocarditis, a heart attack, and multiple episodes of ventricular tachycardia. My bicuspid aortic valve was replaced with a mechanical valve during one of my open heart surgeries as a teen and about three years ago had a defibrillator implanted.

The episode of bacterial endocarditis and emergency open heart surgery was probably the most difficult for me to go through. I mysteriously got sick when I was in my early teens. Both me and my parents thought it was the flu at first. I was taken to my pediatrician to try to figure out what this mysterious illness was. At the time, the doctor through it was just a flu virus which turned out to be incorrect. I was sent home and a few days later ended up seeing another pediatrician because my symptoms were getting worse. This time the pediatrician did a more thorough examination and blood tests to determine why I was not getting any better. After the blood test results came back it was found that I had bacterial endocarditis and was admitted to the hospital soon after that. Through an echocardiogram at the hospital it was found that the bacteria had infected my heart. Emergency open heart surgery would be necessary to replace my valve because the bacteria did some damage to my heart and the valve itself.

After my heart surgery, my condition was not improving. I had gone into cardiac arrest not too long after the surgery and had to be revived with an external defibrillator. My condition eventually improved and I was able to go home after a month and a half long recovery in the hospital. This was by far my scariest and most traumatic medical experience.

I have had some other scary medical experiences, more recently with arrhythmia. It was about three years ago that I started having issues with ventricular tachycardia. That was when the defibrillator was implanted. I have had two visits to the ER because of arrhythmia and two ablations this year to try to get rid of arrhythmia causing cells in the scar tissue in my heart. I am about to get a second opinion from an Electrophysiologist about my arrhythmia issues. Apparently, I have a large scar in my heart from a heart attack, which happened during a previous heart surgery when I was in my teens. The scar tissue has arrhythmia causing cells in it. These cells in the scar tissue have caused arrhythmia that have caused shocks from my defibrillator.

Just recently, I had a visit to the ER with a fast heart rate. At my next doctor visit, I am going to find out if there is anything else the doctors can do about the scar tissue, get more information about my condition and come up with a treatment plan. Hopefully, this will prevent me from going to the ER or being shocked again. Having heart rhythm issues is scary and its important to be on the same page with your doctor in case anything does ever happen. Being prepared for it is hopefully going to help me have some peace of mind.

As far as medication, I am on Metroprolol and Losartan to help with heart function. Warfarin (blood thinner) and baby aspirin for my mechanical valve, Tikosyn for arrhythmias, and most recently Magnesium because my Magnesium level was low when I was in the hospital.

To stay healthy, I walk on the treadmill 20 to 30 minutes, three to four times a week. I can run for a short period of time if I want to but if I run for an extended period of time, I would become out of breath, would need to stop and rest. Now that I am in my 30s I notice I get tired easier at night. It is becoming harder to stay up late sometimes but this could be a combination of getting older and the medical issues.

Outside of my medical life, I job search, focus on interests and hobbies, volunteer for important causes and spend time with family. Since I am not working right now, I have a lot of free time to do things I enjoy as well as work on my job search. My hobbies include Toastmasters (a professional organization that helps you improve communication and leadership skills), personal and professional development, church events, volunteering, reading, and arts and crafts. I volunteer with the Pediatric Congenital Heart Association in the Chicago, Illinois suburbs. We have a heart walk once a year and do quarterly care bag assemblies where we put together care bags for kids and adults with CHD in the hospital for heart surgery or heart procedures. We also have various other educational and social events throughout the year to build community and educate patients. It has been a great experience to give back to the CHD community.

Right now, I am living the single life and do not have any children. Medically, it is possible for me to have children but I would have to be watched closely because it would be a high risk pregnancy due to my health condition. Now that I have a defibrillator that might even make it more complicated to have children. I have not really discussed that with my doctor yet since I do not plan to have children anytime soon. Truthfully, since I am single, not dating, engaged or married right now, I do not want children. If some great guy came along, maybe that would change, but at this point, no children.

If I could leave the CHD community with some advice it would be to learn to become your own health advocate, seek support, stay strong and be courageous! By learning as much as you can about your condition you can enable yourself to advocate for your health. Medical situations might call for us to speak up to doctors and medical professionals about our condition. Situations will call for us to deal with pain and discomfort. Education and support can empower us to know what is going on with our health, give us the courage, and the ability to speak up. Stay strong and be courageous!

For more information about the Pediatric Congenital Heart Association go to http://conqueringchd.org/ To contact me with questions or comments, contact me at danielle60148@yahoo.com.

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