May 12, 2008 Latest post:
22 hours ago
I was born with Coarctation of the Aorta (COA), which is a congenital heart defect, where the aorta is narrowed. My COA was found when I was 8 years old, and I underwent heart surgery to help repair the narrowing. In May 2008, I had heart surgery at Mayo/St Mary’s Hospital to repair N aortic aneurysm and replace my aortic valve.
On May 12, 2021 I will be undergoing my third open heart surgery to install a mechanical aortic valve. This will take place at Mayo Clinic/St Mary’s in Rochester, MN.
Please see my full story for more information and details. This page was also used for my 2008 - so most of the pictures and journal entries are outdated.
I was born with Coarctation of the Aorta (COA), which is a congenital heart defect where the body's main artery is narrowed significantly reducing blood flow to the body's lower half. My COA was found when I was 8 years old after being involved in a 3-wheeler accident and going to the hospital for a concussion, it was found that I had no blood pressure in my legs. On February 21, 1988 I underwent heart surgery at the Children's Hospital in Omaha, Nebraska. The type of surgery I had is referred to as, subclavian flap aortoplasty, where my left subclavian artery (artery out of my left arm) was used to help expand the narrowing.
At follow up appointments after surgery it was determined that I would probably require more surgery later in life, but at that point I had no additional problems relating to the COA.
I did suffer a stroke on June 9, 2001 that may have resulted from the COA, but was never pin pointed. The stroke affected my left side, primarily my fine motor skills, which have all returned after physical, occupational, and some speech therapy.
In 2008 it was discovered that I had a 6.5cm aortic aneurysm and bicuspid aortic valve that was leaking. I went through heart surgery at St Mary’s hospital in Rochester to fix the aneurysm with a graft (like a plastic tube) and replace the aortic valve with a bovine tissue valve. The tissue valve allowed to still have children without the worry of blood thinners. However, the tissue valve would not last forever.
Since 2008 I have been following up with a cardiologist to monitor my heart and tissue valve. Also in that time, God blessed me with a wonderful husband (Andy) and two beautiful children (Aksel and Gracie).
In the last year my bovine tissue valve has been showing it’s age and needs to be put out to pasture(cow joke). I’ve been having shortness of breath and just general feeling of unwell. A normal aortic valve has a “valve area” of 3-4cm. In December my valve was measured to have 0.8cm valve area, which put me in the severe aortic stenosis category. Since then I’ve had a Ct scan and heart catherization to further monitor function. About a month ago, I spoke with a nurse practitioner from Mayo that said their research shows that most women in my age range with my exact valve need replacement at the 5-8 year mark. I’ve had mine almost 13 years. Whoa!
On Tuesday, May 11 - I have a bunch of tests scheduled at Mayo Clinic in Rochester. On Wednesday May 12, I will have my third open heart surgery- to replace my aged and heavily calcified tissue valve with a mechanical valve. I am anxious to get this done, recover, feel better, and move on with my life.
Andy and I are so blessed to have wonderful family and friends to help us through this challenging time.