Aortic Valve Disease, Blood Flow, and the Brain!

Aortic Valve Disease: Breaking through the Complexity

 

What is happening to me?

Perhaps there is nothing more frightening than knowing our brain is failing us.

Early this year, an intelligent, capable woman underwent extensive neurological testing. Along with some transient visual symptoms, she had increasing difficulty finding words. Stroke was ruled out. Several physicians suspected the onset of dementia. Only one neurologist said a definitive no, this is not dementia.

A few months later, in a city far from home, she could not breathe. She found herself in a very busy ER, where ultimately physicians and surgeons were challenged to save her. They did!

Today, as she recovers at home from an emergent, high risk surgery to replace her failing “TAVR in SAVR” prosthetic valve, her brain is clearly much better. 

While in retrospect there is tremendous gratitude for her “miracle” surgery and recovery, coming this close to the precipice, putting her life into the hands of physicians far from home in another city, is never by choice. Not for the person. Not for the physicians who confront the crisis. 

What could be learned from this? Were her brain symptoms an early indicator of what became an emergency originating with her aortic valve?

The following recent publication is very timely regarding the use of widely available ultrasound to aid understanding of blood flow, not just at the proximity of the aortic valve, but as it continues through the aorta to the body, and particularly up to the brain. Clicking on the title below opens the full paper.

Method of Recording Reverse and Delayed Turbulent Blood Flow in an Obese Pediatric Patient with Congenital Aortic Stenosis

I share here corresponding author John Leighton’s comment to the Bicuspid Aortic Foundation: 

“Any new loss of cognitive function in a valve patient whether a child or an adult is cause for concern.” 

At the Bicuspid Aortic Foundation we know, from our lived experience with aortic valve disease, that shared examples such as this paper’s description of one 12 year old, may often shed light on the plight of many others who need help too. 

The Bicuspid Aortic Foundation thanks the authors of this paper for their interest in and work on behalf of those with impaired heart valve function.

Piercing the mystery that clouds their lives,

shining light on their blood flow, 

Creating a Climate of Hope,

~Arlys Velebir

                     Bicuspid Aortic Foundation

Post Script

Why was surgery the only option, instead of a TAVR in TAVR in SAVR? Quite simply, the type of TAVR valve in her heart did not allow insertion of another TAVR without blocking the blood flow to her heart. Surgery was the only option for a new aortic valve. The Bicuspid Aortic Foundation is very grateful for those skilled hands that perform these complex surgeries, extending the lives of those born with bicuspid aortic valves.

Continued Thoughts and Prayers for Adam

Adam was slated to have surgery last week.

Plans sometimes change due to circumstances beyond our control.

That is what happened to Adam.

He is now scheduled for surgery early Monday morning.

Our thoughts and prayers are with him, his family,  and his surgeon. 

The Three W's: What, Where, When

Coming to grips with having open heart surgery is a process, except in emergency situations. Adam had done this once before, when the aortic valve he was born with and the bulging aorta above it, needed surgery. That is how we at BAF first met Adam, as he researched information as part of his decision making process. 

This time, with infection in the picture, surgery needed to be done promptly to fully vanquish the bacteria and put a new, undamaged aortic valve in place. When was to be last week. Where was also settled - Adam lives in an area large enough to have not only an infectious disease specialty center, but also a skilled aortic surgical specialist. Peace with the What (mechanical, homograft, Ross procedure, bovine, or porcine for the new valve) also finally came after weighing the choices carefully.

Valve choice decisions, so many years after the first prosthetic valves were implanted decades ago, remain a thoughtful, individual decision based on many factors. As I heard many years ago now, there is no perfect choice! That is true, but there are many good ones.

When infection enters the picture, as it has for Adam, the considerations are altered. The risk of life-threatening infection returning and destroying the new valve weighs heavily, along with other factors, on the decision-making scale.

Ready for Surgery - Let's Get This Done!

With the help of his physicians and his own reading, Adam was at peace last week and more than ready very early the morning of surgery. By 6 AM he was prepped for surgery, partly sedated, and then . . . . he waited. And waited some more and some more . . . .

Finally, as morning faded and turned into early and then late afternoon, plans were abandoned for Adam to have surgery that day. His surgeon had been working to save someone else all those hours.

Adam says that whoever the other person was, they needed the surgery more than he did.

Adam's Turn - Monday Morning, June 10th

Adam will be ready once again, very early Monday morning. May it be his turn this time, since no one wants any complications to hurt him before the damaged valve with vegetation still clinging to it and any other remnants of infection are safely removed during surgery.

The plan is that Adam will have the Ross procedure. He has a skilled surgeon who will do all that is needed during surgery to clear the infection and save Adam in the best possible way.

Adam

Adam is a strong man, muscled and physically vigorous, with lots of energy! He is a loving husband and father, very much loved and needed. He is still young, with so much to accomplish.

How could it be that he has been so attacked by infection? He does not know how it got into his blood. Once finally diagnosed, he found that he was not alone, that there were so many at the infectious treatment center with their PICC lines in place, being treated for dangerous infections. 

Looking back, he says that, knowing what he knows now, with the first fevers he would have gone to the hospital and requested a blood culture be drawn. It is important for all with prosthetic or abnormal (bicuspid aortic) valves to realize that infection in the blood stream is a formidable enemy that does not play fair. The sooner it is found and treated, the better!

We join together in support of Adam and his family, 

asking that he have a safe, successful surgery, 

and that Adam will soon be home again, 

restored and infection free.

~Arlys Velebir

                           Bicuspid Aortic Foundation