Saturday, January 30, 2016

Carrie in 2016 - Seeking Opinions for a Complex Situation

Carrie Running with Shadow and Stella
Spring 2014

For many with BAV, years may go by with seemingly little or no change. But at some point, it is realized that something was indeed changing inside. It was just that no one, not that person, not their doctors, could detect it. Until one day, whatever was happening can finally be seen. And so it has been for Carrie Mettler.

Carrie in 2014

Carrie first shared her BAV journey with the world here, Carrie Mettler - A Wonderful Athlete with BAV . Beginning with her athletic high school days, through the implantation of a pacemaker in her late 20's, discovery of her BAV and aortic aneurysm, and then her brain aneurysm in late 2003, we read of her amazing triumphs. For the next 10 years after her brain aneurysm surgery in early 2004, Carrie faithfully kept her follow up appointments.  And then it was 2014.

Time for a New Pacemaker

In 2014 Carrie needed to have her pacemaker replaced.  It was decided at that time to upgrade from a single chamber device to a dual chamber model.  They moved the pacemaker from the right side to the left side of her chest, then added two new leads, cutting and capping the old atrial lead.

Carrie tried to resume her normal activity and had difficulty exercising.  It then became difficult for her to even lie flat or bend over.  She felt as if she was being held upside down.  There was obvious neck vein distension along with some facial swelling.  Carrie was sent for a cardiac catheterization, where it was determined that her Superior Vena Cava (SVC) was almost completely blocked.

Carrie Proudly Displaying Ribbons at a Splash Dogs Event
A bulging vein on the left side of her neck is clearly visible.
Carrie underwent surgery to reconstruct her SVC along with the right atrium.  Carrie did remarkably well and was active just 3 weeks post op, walking long distances with her dogs and then running once again a short time later. 

Carrie's Aortic Aneurysm

Then it was time for her next aortic checkup, a routine echocardiogram.  The echo indicted that her aortic aneurysm had enlarged.  Why now, after so many years of being stable? Changes in aortic aneurysms can be unpredictable, which is why it is so important to faithfully keep imaging appointments. 

Could it be due to the increased blood flow after her SVC was repaired?  The surgeon said that the thrombosis and scarring on the lead had been  blocking blood flow for some time. Adding the additional leads caused near complete blockage, giving her the symptoms of Superior Vena Cava Syndrome.  Once this was repaired the blood flow is likely more forceful.

After many years of low blood pressure, Carrie has also had bouts of high blood pressure that have been difficult to control with medication. Could this high pressure also be contributing to a dilating aorta?

Carrie has had some episodes of chest, back and neck discomfort with and without exertion. It is very important to understand what is happening inside.

Carrie in 2016

Carrie, outwardly glowing with health and vitality, is very complex inside. With the encouragement of doctors who have followed her through the years, she is now arranging review of her records by physicians at the Cleveland Clinic. 

Thank you, dear Carrie,
 for sharing your journey with us.

Here at the Bicuspid Aortic Foundation,
 we promise to share each step with you,
 and surround you with a Climate of Hope.

- Arlys Velebir
                         Bicuspid Aortic Foundation