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VSD w/Eisenmenger's Syndrome

Hello to everyone! My name is Stephanie, and I have just recently come in contact with the C.H.I.N. Web site. It is such a wonderful idea, and I am so glad that I found it. I would like to contribute my story since I have never come in contact with anyone that shares my illness

I was born in July 1965, and now I am 33 years old. I was born with my twin sister, Kimberly, in Huntington, West Virginia. In January of 1983 when I was 17 years old and in my senior year of High School, I was seen for a basic physical/check-up. My mother happened to mention to the doctor that my nails and lips turned blue, and I told him that I often got tired and out of breath when I ran or walked up stairs. The doctor listened to my heart and immediately showed he was puzzled by what he was hearing. He told my mother that he heard a murmur, and I needed to be seen by a pediatric cardiologist. At that moment, I knew something was wrong, since from about the 5th grade on I could not run laps in gym class, and I would sometimes faint. I never thought anything about this when I was growing up. I just thought it was me.

So, in that same week I was seen by a pediatric cardiologist. He immediately diagnosed me as having Ventricular Septal Defect (VSD). He was shocked that I had never been diagnosed prior to this, and said that it should have been found much earlier. An echocardiogram was performed, and confirmed that there was a VSD. He wanted to do a cardiac catheterization to measure the pressures in the heart, to see if closing the hole was possible. Because of being one of Jehovah?s Witnesses, and because I explained to him my belief in not accepting blood transfusions, he sent me to a different facility to have this procedure done. If surgery was possible, they would be more equipped to handle my case. So, my family went to to see another pediatric cardiologist, and there, they performed the cardiac catheterization. They found that there had been irreversible damage to the lungs over time, and that the pressure in the right side of the heart was higher than expected?which meant that closing the hole could not be done. I was in a state of numbness, and felt disappointed. The doctors said the only hope would be a combined heart and lung transplant, which was definitely out of the question for me since no heart and lung transplant has been done without blood transfusions.

The doctors just said that I would know my own limitations and, as I had just applied to go to art school, that I should be able to accomplish that goal, but would definitely not be able to run the New York City Marathon (Ha!). Happy to say, Kimberly and I did achieve this goal in December of 1985, through support from my mom, Shirley, and my older brothers, Mike and Terry and older sister, Debra, and my niece, Katrina (who died in 1993). Kim and I graduated from the Art Institute of Pittsburgh, and I had the highest GPA of my graduating class (Kim had the second highest GPA). During this time i was further diagnosed as having Eisenmenger?s Syndrome, which is a right to left shunt, and also, pulmonary hypertension.

For 13 years, I have lived and worked in New York City as a Computer Graphic Artist and Designer. The doctors say that I am doing great, and that some of the reasons are because of my religious beliefs, which brings me much hope and gratification, and that I don?t smoke and drink very little or no alcohol. I try to take really good care of myself, and do what the doctors say. About 3 years ago, in 1995, I began taking Coumadin to help thin my blood, and I am watched very closely to prevent either internal bleeding or blood clots from developing. I also have an oxygen concentrator to help me at night with my breathing. My stamina has decreased some since the first diagnosis, and I have begun having heart palpitations and arrhythmias. At present, I work full-time as a computer graphic artist and also love to do drawings, paintings, and pastels.

One of the reasons I think I have survived as long as I have is prayer to God, and having a hope that someday sickness will be a thing of the past. I have also had a good sense of humor and a positive outlook. Yes, the reality of what I have endured and what I could eventually face in the future scares me at times. But I have gotten help through talking about my situation and having a support system of family, friends, doctors and co-workers. I have found, too, that keeping busy in my work and attending congregational meetings has helped. All of these things have helped me stay strong physically, spiritually, emotionally, and mentally.

I am presently considering the heart and lung transplant, but my concern is that the outcome of receiving such a serious and major operation may be worse for me than if I continue as I am doing. Whether the operation would cut my life expectancy more than if I did not have the surgery is a consideration.

I hope that my story may help others that share the same types of congenital heart defects. Thanks for all the inspiring stories that I read, my thoughts are with you all.

? Stephanie (New York City, NY)

This article was last updated on June 21, 2001

  • Born:  July 18, 1965
  • Diagnosis:  Ventricular Septal Defect with Eisenmenger's Physiology/Syndrome. First diagnosed at age 17. Not repaired.
  • Treatment:  Cardiac Catheterization, Echocardiogram, possible Heart and Lung Transplant Candidate


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