Jane’s Story

As I was writing the day’s schedule on the blackboard in my fourth grade classroom I felt as though someone had done a karate chop right in the middle of my back. Oh, my God, I thought, I’m having a heart attack and the children will be coming in in just a few minutes! I stood silently for a few minutes, experiencing severe pain, but decided that it was not a heart attack because it wasn’t in my left arm, I wasn’t perspiring, and my chest felt ok! I hesitated to call 911 because I didn’t want to upset my wonderful students. So I waited for FOUR hours until lunch and then drove myself to the emergency room! What a fool! 

After an EKG and other tests were normal, I was left to lay on my gurney for a few hours in terrible pain even though I had told them that I had Marfan syndrome. Finally, they decided to do a CT scan on me. After obtaining the results things really started to happen. I was transferred by ambulance (because the helicopters were all out) to another hospital. There I was greeted by the open heart team, but after reading my X-rays they told me that I had had a type B aortic dissection and that they would simply keep me in intensive care watching my blood pressure and help to alleviate my pain. 

After six days I went home and spent the next six weeks sitting, doing needlepoint, reading books by the fire and being well cared for by devoted friends and grown children. 

I was diagnosed with Marfan syndrome at Johns Hopkins Hospital in 1982 while accompanying my nine year old daughter whom our pediatrician suspected of having Marfan. She was obviously a more severe and typical case – I was simply thought to be a marginal Marfan patient with few symptoms and little dilation of my aortic root. That all changed in January 2001! 

Since then I have been quite fine for which I am eternally grateful. I returned to work after seven weeks of rest feeling great. The amazing thing is the younger woman who had substituted for me had had an aortic dissection (type A) just two years before. We told the children that we were two of the five out of a million people who experience aortic dissections!  

I have my tests (MRI, echo, etc.) each year, try to eat healthy meals, walk daily, swim in the summer, and try to be good about not lifting heavy objects. I retired from teaching in 2002 and have continued to enjoy life since then. I travel to Europe whenever possible as well as in the U.S. and try not to think about how far I am from a hospital! One of my doctors advised me to avoid islands, but my cardiologist suggested that if they have a decent hospital it’s ok. I wear my Medic Alert bracelet at all times and have MedJet protection in case I need help overseas. 

I am blessed by having some of the best doctors in the country: Dr. Reed Pyeritz at Penn (now retired), Dr. Richard Devereux at Cornell, and Dr. Theodore Li in Washington, DC. They have me on a regimen of atenolol and norvasc to make sure my blood pressure stays below 120/80. I also take lipitor to make sure all my numbers are perfect! 

My only complaints are difficulty in losing weight, shortness of breath, general weakness when climbing lots of stairs, and recently some lower back pain. I guess that’s not too bad at age 58. I am frustrated by not really knowing what exercises I can do (yoga, pilates?), but have been told to continue walking, riding my bike and swimming. Considering what my life might be I realize how fortunate I am and continue to live my life without much thought to what lies ahead. When I found my 54 year old husband dead of a heart attack (he had diabetes) I truly realized how precious life is, and I plan to enjoy as much of it as I possibly can. 

– Jane