Sunday, October 30, 2011

Bicuspid Aortic Foundation Annual Conference by Webinar, November 12, 2011

Advances in surgery is
a popular topic at BAF meetings

This year, in lieu of an in person conference, the Bicuspid Aortic Foundation is hosting their annual Conference online. This format allows sharing leading-edge information about the treatment of BAV and TAD to a larger community without the need to travel.

The date is Saturday, November 12th.

The time: 11 AM, Pacific Standard Time

The topic: Aortic Valve Surgery

There will be no charge, but the number of spaces is limited.
To Register: It's easy!  Click Here to Register!

Looking forward to having you join us!

Monday, October 24, 2011

Smog Checks and Heart Valves

One sunny Saturday afternoon, I found myself chatting with another woman who also was waiting in line. We had a common goal - getting a smog test done on our cars. Somehow, our conversation turned to heart valves, and we discovered something else in common - our husbands both had valve replacement surgery just over 20 years ago. Their surgeries were done locally only a few months apart - the same hospital, surgeon, and type of mechanical valve. Her husband had two valves replaced - both his aortic and mitral. My husband had his bicuspid aortic valve replaced at that time.

As we chatted, she told me that her husband was still living, but he had suffered more than one stroke over the years. I told her that my husband suffered a massive stroke caused by strands of tissue that had formed on the intake of the prosthetic valve, broken off, and traveled to his brain.

She told me that his doctors want to replace her husband's mechanical valves. She was not  specific about what was wrong, why the doctors wanted to "redo" them. I told her that my husband's mechanical valve was replaced in 2006, as soon as possible after his stroke, to prevent even further injury to his brain.

And then she voiced what we both were told two decades ago - that mechanical valves would last much longer than a human life span. Yes, they were supposed to last . . . . And it is true, the valves did not break, but still, here we were years later - despite the innovation and careful engineering of these valves, there had been complications, serious complications, after all.

In addition to the tissue strands that had formed on his mechanical valve, my husband also had something called pannus, a kind of scar tissue that his body had formed around the valve opening.  There are many questions about why and how this happens - and no real answers. In my husband's case, a little over 15 years after its implantation, the valve that had kept him alive became a significant threat to him, and the affects of the injury to his brain from those strands remain with us nearly six years later.

Mechanical Valve With Pannus & Strands
 Removed From My Husband in 2006
I realize now that the mechanical valve implanted in my husband had only been used in humans for 13 years at the time he received it. There was a great deal of understandable enthusiasm at that time about improvements over prior, more primitive mechanical solutions. But time has continued to inform the medical community about both mechanical and tissue valve options. Today, the message to heart valve replacement recipients is about choosing the valve they prefer. Yes, there is more information available about the outcomes, so that patients can make informed choices about repairing or replacing their heart valves. And there is part of that message that is important to understand - there is no perfect solution, but there are life-saving options. This recent paper from Japan , Current status of the mechanical valve and bioprosthesis in Japan, expresses well the message and decisions for those with heart valve disease.

Since that sunny afternoon, I have thought from time to time of this woman and her husband. She told me that he refused the offer to have surgery to replace his two mechanical valves. If he doesn't have surgery, I wonder what he will experience, how he will feel. And if he should at some point decide to have surgery, what the outcome would be.

I remember her face, her eyes, as we spoke - I saw something there beyond our words. We were two strangers sharing a rare understanding - the ups and downs, the joy and the pain that had come to us over the years because of heart valve disease.

Perhaps I am thinking of this today because I remember it is soon time for my husband's echocardiogram. We keep an eye on his "new" tissue replacement valve, as well as his own mitral valve, which is "a little leaky".

And I remember, that without something being done those many years ago, I would not have him here today.  And I hope for better solutions, more understanding of the complexities, for those with heart valve disease.

At the Bicuspid Aortic Foundation, we do not forget that we must press for a better and brighter future for those with heart valve problems, including those who, like my husband, from their first breath of life face a future that will include heart valve disease.

Arlys Velebir
President and Chairman
Bicuspid Aortic Foundation

Tuesday, October 11, 2011

"We Thought That My Family Died of Heart Disease"

Sadly, it is not unusual for the Foundation to hear from someone with thoracic aortic disease (TAD) who has already lost other family members - loved ones that they and everyone else assumed died from heart attacks. In one family, two brothers had already died of presumed heart attacks. When the third brother died, it was discovered his aorta had torn and killed him. All three men died in the prime of their lives.

One man wrote to tell us of the discovery of an aneurysm in his chest, and mentioned it was taken for granted that all the men in his family had heart trouble and died of supposed heart attacks. There were no autopsies. Could it actually have been their aorta?

The cause of these deaths is now questionable and deeply troubling, once a thoracic aortic aneurysm has been  found in these families.

Michael Kirk is among those who in hind sight believe members of their families lost their lives to thoracic aortic disease. Michael, a cardiac intensive care nurse, spoke about his own experience with aortic dissection at the Foundation's Conference in 2007. There are some unfortunately familiar themes as Michael tells his story - "your heart is fine", "do you have anxiety?", "you don't fit the profile for someone with aortic dissection", . . . .

In the following video, Michael tells what happened to him. Incredibly, his aorta somehow held together for 68 hours before his dissection was diagnosed.

In the video below, Michael talks about how, despite being a medical professional himself, he was told "you have to be crazy to be here". When his dissection was ultimately found, it became apparent to everyone that they had not listened to him. It also became apparent that pre-conceived ideas about who has thoracic aortic disease and what they look like clouded the medical team's thinking and put Michael at grave risk.

A paper was published in September 2011 in Germany that addresses the importance of awareness: Diagnostic pathways and pitfalls in acute thoracic aortic dissection: Practical recommendations and an awareness campaign. The authors  mention a poster campaign, "Thinking of it can save lives".

Finding TAD as early as possible is key to avoiding emergencies. But when someone with TAD does arrive at the ER seeking help, every moment counts in finding the problem. It begins with thinking about the aorta.

Arlys Velebir
President and Chairman
Bicuspid Aortic Foundation

Thursday, October 6, 2011

Thoracic Aortic Disease (TAD) - Looking For It and Finding It Early Saves Lives

The Bicuspid Aortic Foundation issued a press release this week, Bicuspid Aortic Foundation Observes Thoracic Aortic Disease Awareness 2011, to bring attention to the risk factors associated with TAD and the importance of finding TAD earlier. Finding TAD early allows for proactive treatment in the most favorable setting - before a life-threatening emergency strikes.

On this Blog, the Foundation is featuring the experiences of some of those with various forms of TAD. In the video below, along with Dr. Sharo Raissi, Chairman of the Scientific Advisory Board, I speak about meeting some of those with TAD, and the great difference that information and finding TAD early can make.

Through out the remainder of 2011, the Foundation will continue to place special emphasis on finding Thoracic Aortic Disease as early as possible. Please help us by sharing this information with everyone you know.

Arlys Velebir
President and Chairman
Bicuspid Aortic Foundation