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Julie with her husband |
A Blalock-Taussig shunt at 18 months worked wonders for many years. But at age 12, Julie was beginning to tire easily. She was one of the first children to have a Fontan procedure in our area. A few days later a pacemaker was put in that paced "on demand" only if her rate got too low. Several months later, another open-heart surgery was done to repair a leak in the Fontan.
Again the procedure worked magically, and Julie was healthy all through high school and college. At age 22 she started to get bouts of atrial flutter. She underwent many cardioversions, tried lots of various drugs with varying degrees of success. An RF ablation helped for only a short time, and a second one helped for a year.
Finally, at age 28, Julie had a revision of the Fontan, and at the same time got a dual-chambered, smart pacemaker, which completely controls the heartbeat. In the year and a half since then she's had two cases of flutter, but both times it was easily corrected in a few minutes at the hospital by using the pacemaker. So, for now, everything seems under control.
Julie's heart problems have not been the major theme of her existence. Rather, she's led a very full life. She did great academically, and won many state and national math and computer competitions. She was always creative, for many years self-publishing a book every year and doing every kind of art and craft. She played cello in the acclaimed city youth symphony. She learned foreign languages easily, including French, Russian, German, and Esperanto. Her love of animals led to many small critters and culminated in "a chaos" of ferrets. Because of her concern for animals and the environment, she turned vegetarian in high school, and vegan a few years later, and maintains a web site to help other vegans. She volunteered for many years helping elderly women.
After getting a Ph.D. in mathematics, Julie works as a research mathematician in San Diego. She's married to a wonderful young man she met at grad school, who works in the same field. She's an extra-sweet person who knows how to enjoy life to the fullest.
April 2009 Update
This is an addendum to Julie's story. Unfortunately, she died in 2007, at age 35, of a stroke. A blood clot went to the brain stem. The doctors, pathologists, etc., could not tell whether there was any connection to her heart defect, or if it was just a stroke that could happen to anyone. Her death was as good as one could wish for; she had a fine day at work, a typical evening at home with her husband and ferrets, then dropped unconscious and died two days later -- no pain or emotional trauma for her.
We, her parents, brother, and husband, are forever grateful to Julie for all that she gave us in her too short life. We perhaps appreciated her even more than one would a "healthy" child, didn't let the time slip by. We savored every day, every year -- we have no regrets in that respect.
