Strong Today
Tammy as a toddler with her dad, who passed away after an aortic aneurysm at age 32.
Successful aortic replacement surgery!
Going home from surgery!
By Tammy Asplund
I was diagnosed with LDS type 1 in March 2020, at 53 years old. But the story begins in 2000, with a visit to my son's pediatrician to get him ready for kindergarten. The doctor heard a "ticking" and referred us to a cardiologist. The cardiologist ran a battery of tests and said he had a dilated aortic root and bicuspid valve. He asked whether there was a family history of heart disease.
My father died at 32 years old. I was told it was "heart trouble." His mother died at 30 from "heart trouble." What I learned from the records I obtained about my father was that he also had a bicuspid valve and aneurysm. His physician's notes all indicated that there was no need to "worry" about his children.
Regardless, I was referred to a cardiologist who found the same dilated aortic root as my father had. Based on my father's medical records, I saw a geneticist who recommended that my son and I both be monitored by our respective cardiologists. And so we did. For 20 years we monitored. We were sometimes taking beta blockers, but only if there had been a significant change within the time span between scans. After 10 years, we were both encouraged to get a scan only every 2 – 5 years. The doctors told us there was no need for surgical intervention until our aortas reached a diameter of 5 cm. We were discouraged from participating in contact sports or lifting more than our own body weight, but not given any other restrictions or encouraged to make any lifestyle changes.
Then in November 2019, at 26 years old, my son survived a brain aneurysm. After the stent was placed, he underwent a full genetic panel which revealed Loeys-Dietz type 1. His cardiologist immediately recommended a valve-sparing aortic replacement. His surgery took place in March 2020. Two days before we flew to the Mayo Clinic for his surgery, I underwent genetic testing.
When my results came back (also Loeys-Dietz type 1), my cardiologist also recommended an immediate valve-sparing aortic replacement. My surgery was in June 2020.
Looking back, I remember that I experienced a wide variety of health issues prior to my LDS diagnosis. I struggled throughout the years and always felt that the medical problems I had somehow connected, but no doctor ever offered an explanation. In some ways, I feel vindicated – it was NOT all in my mind.
There is so much to learn about this syndrome. I had difficulty finding any doctor in my area who has even heard of Loeys-Dietz, let alone treated a person with it. I am so grateful for the LDS Foundation and the LDS Families Facebook group. These groups are full of caring people who are willing to share what they know and provide support and encouragement. I have been able to put together a really great medical team. I know now the precautions I must take, and I feel very optimistic about the future.