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Dinah

Coarctation of the Aorta, Aortic Stenosis


Dinah
...and the kids (2004)
Family Portrait (2002)
My name is Dinah, I am 27 years old and I have survived two heart surgeries, and I have a congenital heart disease. I was born with aortic stenosis, a bicuspid aortic valve (normal hearts have a tricuspid valve), and coarctation of the aorta (narrowed aorta).

 In September of 1978 (I just turned 4) I had my coarctation repaired with closed heart surgery (they go in through your back). The surgery went very well and was a success. My aortic valve at the time was producing mild stenosis and so my doctors agreed it would be best for me to wait for more valve research and technology to come about before having valve surgery to correct the valve.

I went for checkups every year and my parents watched for symptoms. Every year everything was the same and I was having no symptoms so I could wait for better research. I graduated from high school in 1992, and I married my husband Russell in December of 1992. I started a full time job at a bank in Data/Computer Operations and all was well.

In June of 1995 I became the most prized and accomplished title I had ever hoped for - A Mother. I had a beautiful baby boy, Austyn. I had a wonderful pregnancy and no complications. I was hired in June of 1996 as Office Manager for The Arkansas Financial Group, Inc. (I am still there today). I was working full time, taking care of a baby, & attending college classes after work and on weekends. On April 26, 1999 my beautiful daughter Alyxandra was born. My heart was taking on a lot more stress than it was used to. Yet, I was convinced that my body had adjusted to my heart disease somehow and I would never have any symptoms or problems. I just put it all behind me and concentrated on my children, my family, and my job.

In September of 2000 I had a sinus infection that wouldn?t go away. We had just moved to another town and I didn?t want to drive to my old doctor so I opened the phone book and dialed the first clinic I saw and off I went. I saw Dr. Deborah Cerrato (a wonderful doctor) of Cabot Medical Clinic. She examined me. I noticed she spent a lot of time listening to my heart than any other doctor had done before. Then she asked me questions about my heart murmur, and I then proceeded to give her my story about how I was born with a condition called aortic stenosis and I had surgery and now I am fine. She did not agree and was very concerned with my condition. She asked how long had it been since I had seen a cardiologist. I told her that I didn?t remember maybe 1983. After going to a cardiologist for years and getting the same diagnosis and being told that I would have to wait for more research, I started seeing my general doctor every year instead. He made sure that I was having no symptoms, etc. She then told me that she thought it would be a good idea to have it checked out and have a few test ran just to make sure everything was okay. She referred me to cardiologist after having an echocardiogram done.

The results were that the gradient numbers in my left ventricle were now showing severe aortic stenosis. My left ventricle was extremely enlarged. I needed to have open heart surgery to repair my fused valve to take the stress off my left ventricle. My left ventricle could dilate and cause heart failure and I could die.

On June 11th I had the surgery and I was very blessed to have Dr. Drummond-Webb perform my surgery of Arkansas Children's Hospital. He was able to save my own valve instead of replacing it with a mechanical one. The surgery lasted for eight hours. I had few complications. On the 2nd day after surgery I was up and walking and on the 4th day I got out of ICU and went home on the 5th day. I went back to work after 4 weeks of recovery. I will know in June of this year how my valve is doing and hopefully it will be a long time before I have to have surgery again.

Ever since my surgery I have desperately wanted to do something to help research and technology progress faster. I didn?t really know where to go or who to call. So, I am searching the internet and I have contacted and joined my local American Heart Association. I am doing the Heart Walk this May. I cannot express in words how thankful I am for everyone who volunteers, donates, walks, sponsors, or supports congenital heart disease. I do not want to worry anymore about not being there to see my children grow up, graduate from school, get married, and have children of their own. But, I am hopeful that if I ever need valve surgery again that there are a lot of people out their working in my favor.

November, 2005 Update

During a 2002 checkup after heart surgery, the echo showed a leaky valve and so I was put on Altace to help control that. One year later, my EKG showed that my rhythm had totally changed. It changed so much that the doctor thought the nurse had the leads on wrong and had her re-do it twice and then finally came in and did it himself. He sent me to an electrophysiologist. She did several tests and couldn't find anything, and then finally put me in the hospital and did an EP study a few months later. My heart stopped during the EP Study and so she implanted an AICD in April 2004.

In Jan 2005, I became so ill, I had fever, chills, vomiting, weight loss (that was the good part!). I went to see my PCP and she put me on antibiotics b/c I had some sinus drainage too. One month later, chills, fever, all back again, so this time my PCP does a blood culture and gave me a shot of Rocephin b/c my urine test showed I had a UT infection. She calls me 3 days later to tell me to go to the hospital b/c my blood culture showed strep bacteria. I stayed in the hospital for 4 long horrible days of being poked and prodded with needles every 30 minutes. I had a T-Echo (where they go down your throat while your awake) to check for vegetations on my valves and leads. None found. All blood test came back negative for strep, but only because my PCP had given me the shot of antibiotics. Then exactly one week later...fever and chills are back. I went back to see my PCP and she did the cultures again. Two days later, I am back in the hospital... more needles, another T-Echo...1 tiny vegetation was found on my Mitral Valve!? So they diagnosed me with Endocarditis, extracted my AICD (in case it harbored bacteria), and put me on IV antibiotics for 6 WEEKS!!

I went back to work and lived my life normally ANYWAY! This heart disease will not get the best of me. My AICD had nothing on it, but when you get bacteria, they take it out regardless. I went in for a check up in July 05 and the echo shows my numbers rising again. I have moderate stenosis with numbers in the 70s. Open heart surgery is in my near future to replace the valve. My valve opens and closes really well though so it may be at least a year before having to do that. I will have the AICD back in before the year is up.

God has brought me through so much and blessed me with such a wonderful loving family and I give him all the glory. I know he will see me through this too. Something good for his glory will come out of all this. I am blessed and HE will protect me and bring me through.

? Dinah (Arkansas)
 


This article was last updated on November 9, 2005

  • Born:  August 24, 1974
  • Diagnosis:  Coarctation of the Aorta, closed heart surgery @ age 4 to repair. Bicuspid Aortic Valve Stenosis-Surgery last June to open the fused valve, Endocarditis
  • Treatment:  Valvotomy (Open Heart Surgery and Repaired the Coarctation of the Aorta with Closed Heart Surgery


 

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