Here for a Reason
I am one of the lucky ones... On November 19th, 2022, I was rushed to Renown Hospital in Reno, NV where I survived an emergent open repair to a ruptured 8.7 cm abdominal aortic aneurysm. I had multiple blood transfusions and coded twice over a few hours. One minute I was working and the next I woke up days later in ICU. Eventually, I was able to go home, and I thought everything was fixed and done.
The doctors were amazed that this had even happened to me because I did not fit in to any criteria for why I suffered this aneurysm. Before this medical emergency I had no obvious symptoms of a connective tissue condition and there is no history of aneurysms or heart issues within my family. At my follow up several weeks later my doctor mentioned how maybe I had a genetic disorder called Marfan syndrome and a genetic test was ordered. In March 2023 I found out that no, I didn't have Marfan, but actually Loeys-Dietz Syndrome type 4.
My family, primary care physician, cardiologist and vascular surgeon created a plan – tests were ordered and performed. I am now being monitored for vascular and orthopedic issues common in those of us with Loeys-Dietz.
My life has changed dramatically over the last year. I have a different outlook on life! I am here for a reason and I am taking my time figuring out exactly what that is. I believe a positive outlook and support are keys to surviving not only Loeys-Dietz Syndrome, but in life in general, and that is what I want to bring to the table. With the help of the Foundation, I have begun connecting with other members of the LDS community.
I have a wonderful husband, son and doggy daughter that has been by my side every step of the way. A mom who has a loving listening ear, a sister and brother that I have reconnected with through this experience. I am just so grateful to be alive!