NARRATIVES
TALK TO A
ADVICE
I am so glad that I found this web site because all my family's doctors keep telling me how rare this condition is and how there isn't much they can do on a diagnostic and preventive basis. All of your stories inspire me and make me confident that if I have inherited my family's curse that I can survive it. My maternal grandmother was the first to be diagnosed. She was 84 years old and was found dead at her home. Because she was in good health and was not under a doctor's care an autopsy was ordered. Her cause of death was dissecting aortic aneurysm, which ruptured causing cardiac tamponade. Because of her advanced age no one really thought it was all that unusual.
Five years later my maternal Aunt was rushed to the emergency room with severe chest pains. After a normal EKG ruled out a heart attack, she was told it was probably anxiety and stress and was sent home. Twentyfour hours later she went back and they finally did a CT scan and discovered an aneurysm. Her dissection began in the arch and went back toward the aortic valve. After 14 hours of surgery (she had numerous complications) she was put in the ICU where she remained for three months. Once her injuries had healed sufficiently she went to a rehab hospital for two months to be weaned off the respirator, upon which she had become dependent. Once weaned she spent another two months in an occupational rehab hospital and finally returned home after seven grueling months. The good news is she survived. She has suffered permanent damage though. She is very unsteady on her feet and she slurs her speech. Her short term memory is also damaged. But overall she has made a remarkable recovery. She has her life back. She can drive, she is independent and finally healthy. Her intellect and personality were unaffected and she realizes how lucky she is. Her doctors say she is one in a million.
On August 13th of this year my Mother and Father were on a bike ride when my Mother stopped, complaining of chest pains. My Mom has always been extremely healthy and physically active so she knew it was serious. When the pain began radiating to her back and abdomen and her leg went numb my father rushed her immediately to the hospital. Once in the ER they did an EKG which came up normal (they always think it's a heart attack). My mother informed the doctors of her family history of aortic dissection so they rushed her right into CT. They discovered the dissection and within two hours she was in surgery.
Her surgeons were magnificent and did all they could given the massive nature of her dissection. The dissection began in the arch and went down the entire length of her abdomen. She essentially had both a thoracic and abdominal aneurysm. Because the entire aorta was damaged they had nothing to connect to the heart lung machine. So the doctors performed a state of the art procedure in which her body was cooled down and put into full circulatory arrest. The blood flow in her pulmonary arteries was reversed to get oxygen into her brain. Other than her brain, there was no blood flowing through her body. Once in this condition the surgeons work as fast as they can to repair the damage. After about 40 minutes the surgeons didn't want to push it any further so they closed her up.
Unfortunately, she suffered massive brain damage as a result of compromised blood flow to her brain. While she isn't brain dead, she is unresponsive and remains in a semi-vegetative state. After getting the consultation of four different neurologists, they all determined that my mother's condition is irreversible and she will not get any better than she is. Following my mothers written living will instructions, we have withdrawn all life support. She is still alive as I write this but she will likely pass away any day now.
My family is devastated. To make matters worse, I worry about myself since I have such a strong family history. I had a CT Scan a few weeks ago that was totally normal but that could change at any time. My doctors tell me there is no study that they know of being conducted and no way to determine if I will suffer the fate of my family curse. If any of you know of any studies being done or any genetic tests available I would be very interested in hearing from you. I don't want to be next.
Update 19 Oct 2000
My Mother tragically passed away on October 5. After we removed the feeding tubes we knew it was only a matter of days. I know in my heart that I did what she wanted. She left specific instructions in both a living will and verbally with my family. Even though this was her decision, it does not erase one bit of the pain of watching her die slowly over four days. I could hardly bring myself to visit her because she looked so awful and I felt so guilty. I can only hope that she is in a better place now, pain free and with the loved ones who passed before her. Thank you to all of you that have responded to my posting - it helps me to hear your stories as well - it gives me hope for my own health as well as helping me deal with the sudden loss of my mother. I plan to keep in touch with all of you!
© Copyright 2006 Lynette A.
Wilkerson
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