September TAD Awareness 2021and Life-Long Aortic Care

 September - A Month for the Aorta!

Today BJ Sanders 
 Lives her Best Life Story
 through Proactive
Life-Long Care 

Since 2005, BAF has observed September as  Awareness Month for the aorta in the chest.

 Although those who have bicuspid aortic valves and their family members have a great deal of interest in the heart, whose month is February, we have learned that the aorta is vitally important also. We need them both to receive care to live our best life story! We also know that still today, Thoracic Aortic Disease (TAD) is too often overshadowed by the heart or just ignored altogether.

This September, BAF remains convinced that the aorta is more than worthy of  it's own month, distanced from February and "Heart Month" to avoid confusion.  At BAF we are delighted by the various days and weeks also designated this September that focus on the aorta! The aorta needs all the global attention it can get! 

This year BAF particularly highlights living your best life story through proactive Life-Long Aortic Care.

Life-Long Care and the Aorta

BJ Sanders is among those with BAV/TAD who receive Life-Long monitoring and care, including follow up imaging for both her heart and aorta. Described by one cardiologist at a major center as "complicated", she knows the importance of being proactive in order to achieve her best life story. 

The Aorta is Not the Heart! 

First of all, let's get better acquainted with a vital part of us that we may not have heard much about - our aorta! What is it, and how do various diseases affect it?

Diseased aorta in the chest

While there are some articles that describe the aorta and aortic dissection in the press, the aorta and the heart are sometimes blurred, potentially confusing the reader. Much more concerning and dangerous to life itself is confusing the heart and the aorta in a medical setting, often an Emergency Room(ER).

When doctors say our pain is not from the heart, we can ask them to check the aorta. In the United States, CT imaging is widely available and will find aortic aneurysm/dissection.

Very often there is no second chance to prevent an aortic catastrophe.

 At BAF, this September we do not forget Doug Grieshop and his family. This September19th would have been Doug's 50th birthday.

Doug Grieshop - Forever 33

 It remains particularly hurtful that, having checked him for signs of "heart disease" and failing to look further (at his aorta)  for a reason for his chest pain, this strong young man was given anxiety medication, which he took faithfully including the day his aorta ruptured. It was an autopsy that told the truth about his aorta, previously scarred by a small tear and now fully ruptured, his life story had ended much too soon. The diseased aorta remains among the subset of vascular diseases most frequently contributing to serious injury and death.

The Aorta is Not a Tube!

The authors of this recent paper from Italy begin by introducing the aorta:

Pathology of the Aorta and Aorta as Homograft

They open with "The aorta is not a rigid tube, it is an 'organ'....", and go on to beautifully describe it.

The aorta is not "just" a tube, any more than the heart is "just" a pump. The aorta is a vital entity in its own right, and prone to various disease conditions, as these authors describe.

We continue to press for the aorta to be included in proactive diagnosis and ongoing care for all those who need it so much. In a series of articles throughout September, we will share examples of those who would benefit from and need Life-Long Aortic Care. Sharing information is an avenue to empowering the public to advocate for their own best care.

TAD is often silent, taking years to suddenly explode into a bleeding emergency in the chest. Our theme is simple this September:

 Receiving Life-Long Aortic Care

we can

Live our best life stories,

 Creating a Climate of Hope, 

~ Arlys Velebir, Bicuspid Aortic Foundation

I Need to Find Somebody Who Cares

Every Month is Heart Month, Every Day is Heart Valve Day

February 2021 is just a memory now, the calendar has turned to March. Heart Month 2021 and Heart Valve Day 2021 are over.

The need for accurate information, greater awareness, and compassionate care remains just as intensely, for it is always there!

The increased focus, still so fresh from recent February activities, can be the launch pad for maintaining focus and resolve to better meet the needs of those with BAV and associated TAD. Above all, at BAF we are reminded of the need to care, every month, every day.

"I Need to Find Somebody That Cares"

In 2020, the Bicuspid Aortic Foundation heard from a man, (I will call him Mathew, not his real name) who had been told a few months earlier that he had a bicuspid aortic valve. He was also told that he had an aortic aneurysm whose diameter was just under 5 cm. He mentioned several questions he had, as he pondered his active life and what options for surgical repair one day might mean to his future.

He closed that first message by saying that he felt quite lost as he worked through what these discoveries about his heart and aorta meant. And then he wrote, "I need to find somebody that cares."

A Day in April 2020 - Lost

It wasn't Heart Valve Day, it wasn't Heart Month, and it wasn't Thoracic Aortic Disease awareness month (which BAF observes in September). The COVID-19 pandemic was very real, but that is not what weighed so heavily on him, moving him to contact the Bicuspid Aortic Foundation.

It was a day in April, 2020, when this man, needing information, compassion, understanding, and hope, reached out across many miles and borders. There are no borders when it comes to this!

Above all, Mathew needed "somebody that cares". 

How do I know so well what Mathew needed? Experience. The myriad of emotions from the time when we desperately searched for information and help for a bulging aneurysm above my husband's heart are not forgotten as I write this twenty years later.

Not the least of those feelings were the icy tentacles of fear, not inappropriate when confronting a reputed killer. That icy fear began to melt in a surgeon's office, in the presence of accurate information, a plan for treatment, and from that moment forward, lifelong, compassionate care.

Yes, we had a great deal in common with Mathew, having never met him, on that April day in 2020.

A Day in March 2021 - Strength

Not quite a year later, in March 2021, what is it like for Mathew, who was lost and needed someone to care?

He was moved to reach out again, from a very different place. There is no mention of feeling lost, but rather a tone of strength. "I am doing well", followed by beautiful words of encouragement, which we all need so much! 

When this happens, whenever we move from fear and confusion to the place of informed empowerment, we have strength to fully live, making informed decisions for ourselves and sharing our strength and courage together.

How do we at BAF know this? Experience.

Mathew has done this, these recent months. 

Many others have done it too.

At BAF, we are here to walk with you, whenever you would like.

Moving from fear and confusion 

to accurate information,

being in touch with those who

 understand and care, 

Living our lives,

Creating a Climate of Hope,

~ Arlys Velebir

                        Bicuspid Aortic Foundation

"Bovine Arch" - Researching Another Aortic Mystery

Normal arch

More to the Aortic Mystery?
There are so many things not well understood about bicuspid aortic valve in individuals and families. Are there other aortic clues, beyond the abnormal aortic valve, that may be markers, important clues to aid in understanding each person? It is possible that one of those clues may be the aortic arch.

 "Bovine" Aortic Arch - Similar to Cows?
The aortic arch is the curve of the "candy cane".  There are three arteries that branch off from this curve delivering  blood to the head and upper body. Each of these arteries normally branch directly from the aorta, and each artery has its own separate opening, as pictured in the drawing on the right.

However, physicians have noticed that in some people their arch vessels are different. In medicine, the term "bovine arch" has been used to describe these differences.

Variation of the Arch Branches in People - Not Like Cows After All!
Bovine refers to cows, however, this is not an accurate description of what is seen in humans! The variation of arch branches in humans is not the same as that found in cows. Somehow, the name has persisted, although it is not accurate.

Here is a link to a paper that describes the "bovine arch" in more detail.

Bovine Aortic Arch Variant in Humans: Clarification of a Common Misnomer

For those who want to know whether or not they have a "bovine" aortic arch, it can be seen through CT and MRI scans, and may be described in the written reports of those tests. It is something which may be discussed with physicians in reviewing test results.

Please Support the Search for Answers
Those of us who volunteer with BAF know that the bovine arch is present in our families. We are very interested in understanding if this is also a useful marker, another malformation of the aorta that should be noted and understood more fully.

Some family members appear to have "normal" three-leaflet aortic valves, yet they develop aneurysms, "electrical" heart issues, and other issues in their bodies. They also have the bovine aortic arch. There is a great deal to explore further in the quest for answers and help.

The Bicuspid Aortic Foundation is supporting an effort to gather data about the arch variations present in those with bicuspid aortic valves. During these last days of 2018, looking forward to the new year to come, we invite you to join with us by supporting our search for answers. Your donations make this search for answers possible.

Online donations may be made through our MightyCause page.

Above all,

 we encourage everyone

to seek knowledge,

 to ask questions,

 and to never stop learning

 about bicuspid aortic valves and thoracic aortic disease. 

This is how lives are saved,

Creating a Climate of Hope,

~Arlys Velebir

                         Bicuspid Aortic Foundation

Doing Good in the World of BAV and Thoracic Aortic Disease

BAV and aorta research in Ottawa involves mice like this one

My thoughts return often to the research in progress at the University of Ottawa.

 It is hard to find words that will convey what the efforts there mean to those of us with BAV and thoracic aortic disease.

I will try. 

One of the memories I have from my visit to Ottawa is holding the upper half of a human heart in my gloved hands. The lower half had been cut away. As I looked inside at the upper chambers and valves, to my surprise I saw this was a heart whose aortic valve had been replaced. The biological aortic valve that had been so carefully stitched in place by a surgeon's hands was still firmly in place.

I cannot describe the emotions that flowed through me then, and once again now, thinking of an unknown someone whose heart somehow came to be donated to medicine, to be studied after their life ended. I think of Dr. Abbott's work with preserved hearts in what is today the Maude Abbott Medical Museum in Montreal. There are hearts with BAV there. I hope to see them one day.

The cost of progress that others might live longer and more fully can indeed be very high. The cost of someone else's life. An even greater cost, a tragedy, occurs when lives are lost without learning from them how to help others. It means others will continue to suffer and die.

Everything about these mice, including diet, is meticulously tracked

Mice Hearts and BAV - Families Just Like Ours

We need not learn from our human families alone. At the University of Ottawa there are two different mice groups with specific genetic deficiencies that produce BAV. Like human families, some have BAV, some do not. Each one has their only individual experience, although having the same genetics. They are teaching researchers there about BAV, and they are very good teachers, accurately representing the variability of BAV and aortic aneurysm.  It was a great thrill to visit them and listen to what researchers are learning from them. This research is performed in the Nemer Lab, which is contained within the Department of Biochemistry, Microbiology, and Immunology. 

MRI for research in Ottawa
(Note the small, mouse-size opening!)

Echocardiogram machine
just right for mouse hearts!

Research is Costly

Dr. Sharo Raissi (BAF) with Dr. Daniel Figeys

Dr. Daniel Figeys heads the Department of Biochemistry, Microbiology, and Immunology within the School of Medicine at the University of Ottawa. This department includes the Nemer Lab and BAV research. Dr. Figeys very kindly gave us a tour of the research facilities.  It was impressive to see so much equipment in this facility that is solely aimed at understanding disease and alleviating human suffering.

 

 Doing Good in Our World

Dr. Sharo Raissi (BAF), Arlys Velebir (BAF), Dr. Daniel Figeys

At the Bicuspid Aortic Foundation, thanks to donations from the public, we have been able to fund scholarships to support BAV research in the Nemer Lab in Ottawa. They are adding important understanding to the knowlege Dr. Abbott established so long ago.
Some of us with BAV in our families will be called upon to teach the doctors who care for us more about BAV and TAD than they currently know. Those who have wise, skilled and compassionate physicians to walk beside them will indeed add to medical knowledge as their experiences unfold.

However, anyone so moved can make a contribution to help. In these last days and weeks of 2018, our thoughts may turn  to many things, including where we might give financially that will truly do good in our world.

This is to tell you that you can do good in the world of those with BAV and thoracic aortic disease through a donation to BAF, as we collaborate with those working to understand BAV and thoracic aortic disease. You may donate online at MightyCause 

Thank you for joining with us and

Creating a Climate of Hope,

~ Arlys Velebir, Chairman

        Bicuspid Aortic Foundation