As many of you know, when Katie was 10 years old, during a routine checkup, her doctor noticed an unusual sound when listening to Katie’s heart. After followups with a cardiologist, Katie was diagnosed with subaortic stenosis, a condition where the area leading up to the aortic valve in the heart narrows, causing a pressure gradient which puts strain on the heart muscle and valve. After having surgery to relieve the problem when she was 10 and 14, she continued to receive a series of frequent echocardiograms to monitor the condition.
In 2009, one of these echos noted elevated pressures in the heart, which caused concern for her cardiologist. Echocardiograms can measure pressures within the heart, but are known to not be especially accurate. Consequently, her cardiologist recommended she undergo a heart catherization, where direct measurements of the pressure gradients within the heart could be taken. Measurements in the 2009 heart cath were lower than those shown in the echo, though still high enough to be of concern. Katie’s cardiologist suggested we consult a cardiac surgeon for the possibility of moving forward with surgery to again relieve the problem. After consultation with a team of cardiac surgeons in Dallas, the decision was made to not perform surgery at that time, due to the borderline level of pressures within the heart, Katie’s lack of symptoms, and the lack of stiffening or hardening of the heart tissue. The surgeons suggested we continue to follow up with two echocardiograms every year to closely monitor the situation. Over the past three years, the pressures measured by the echos continued to remain fairly stable.
On January 21, we met with Katie’s cardiologist for one of these visits. Results from the echocardiogram showed that there had been an increase in pressure within the heart, to a level the cardiologist was uncomfortable with. To again have a more accurate reading of the pressures within the heart, he recommended another heart cath be performed. We initially scheduled the procedures for late March, but decided to move it up to February 12 based on the desire to have results sooner, and because the possibility of scheduling sooner opened up.
The procedure yesterday went smoothly, and Katie is recovering well today, though she remains sore. The results, however, were not as encouraging. The heart cath measurements showed pressure gradients within her heart that were higher than expected, and have moved into the “severe” range, meaning that surgery will almost certainly be needed to lower the gradient.
At this point, we do not have many details about what will be involved in the surgery, though we do know it will be an open heart procedure. At this point, we expect that there will be an attempt to clear out some of the narrowing below the aortic valve. Because Katie also has a condition known as left bundle branch block, and because of the area in the heart where the surgery will be performed, it is also likely that she will need a pacemaker following the surgery. An unknown at this point involves whether the surgeons will also want to replace her aortic valve with a mechanical valve at the same time they are fixing the blockage. There are significant potential downsides to both approaches, and we will will have to discuss with the surgeons about which approach is better in the weeks to come.
We are currently scheduled with for a followup visit with Katie’s cardiologist on April 1 (no April Fools joke). We do not have a firm date for when the surgery will take place at the moment, but expect that it will be sometime this summer.
We thank you all for your support and prayers in this time. We will update this page as new information becomes available, and try to use it as a centralized place to keep everyone informed.
Jeff and Katie