September Awareness 2022 - Larry Abramson 1955 - 2021

Larry and his wife in 2008,
after aneurysm/valve surgery

In September 2019, Larry gave the following to the Bicuspid Aortic Foundation, to encourage others and raise awarness about the aorta in the chest. It is painful to realize that just two years later, on September 22, 2021, he did not survive a 4th open heart surgery, a fight forced by infection.

September Awareness 2019 - Larry Abramson 

I remember with sadness the last time I heard Larry's voice, no longer strong and clear, the tone roughened by his illness.

 Larry was very unwell by then, after days and weeks of ups and downs - testing, searching for answers, reaching dead ends - had become months.

At last, the villain was cultured in his blood, the infection’s damage to his heart became clear, and one more surgery, his 4th, was his only hope.

Larry did not survive that last surgery. The infection’s damage was too severe.

Devastating bacteria have evolved, with the ability to conceal their presence and aggressively attack the heart and its valves until extensive damage is done. Such an infection ended the life of this amazing man, born with BAV. 

It was in the "early days" of heart surgery that he had his first, at age 11. From his second surgery at age 20 onward, he lived with mechanical aortic valves, a span of 44 years. This account by his family speaks to the vibrant, active man he was, until those last weeks. 

One year later, 

the Bicuspid Aortic Foundation remembers Larry, 

who lived so vibrantly with "great heart",

 and was taken much too soon.

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

BAV, Aorta 4.5 cm and "Paper Thin"

Surgery is Behind Him Now!

Hope, Courage, and
 the Heart of the Warrior (red jasper)

With the soft chiming of a monitor as background music, his voice on the phone was music to my ears. From his hospital room he told me some wonderful things - he is recovering well, he has a new prosthetic valve in place of his failing BAV, and lots of his aorta was removed. He will soon be out the door and on his way home to recover, wonderfully repaired inside!

And then he told me something that gave me chills. His surgeon had found that his aortic aneurysm was paper thin. Yes, paper thin and fragile at "only" 4.5 cm.

In theory, it was not supposed to be that thin, fragile, and dangerous at that size. In some people, it is.
The challenge is, who are those people? How can they be identified?

His Failing BAV Justified Surgery

He contacted us at BAF after his initial diagnosis. He had additional testing and then sought a surgical opinion at a major center. The surgeon there initially thought of retesting again in 6 months, but after further reviewing the failing BAV and its affect on his heart, the decision was made to schedule the surgery.

Did a failing BAV prompt surgery

 in time to prevent his aorta from tearing? 

Yes, the known justification for his surgery was the BAV. That is because there is no way to know, no testing, to show how fragile the aneurysm is. Size alone does not tell enough.

There is no current testing to tell anyone that this aneurysm was dangerously thin and fragile at a relatively small size.

This is why even those who are diagnosed may dissect or rupture their aorta before they have surgery. One surgeon told me that a local hospital is actually seeing more, rather than fewer, dissections come to the emergency room. Something is very wrong with that picture! I am so thankful that it will not happen to this young man -  he will not experience life-threatening bleeding in his chest. Some time in the next 6 months, without surgery, what would have happened to him? That question, that threat, for him, is gone now.

He is 39 years old, a husband and father with young children. He is the typically active BAVer. He holds a responsible job and is intelligent and highly capable. In short, he is in the prime of his life.
Thanks to timely diagnosis and surgery, he will soon resume his active, busy life with his family once again.

Prevent Dissection and Rupture - They Should Not Happen!

Dr. Lara Gharibeh, Dr. Alice Lau
Both engaged in BAV research at U of Ottawa

This is why research that helps explain what happens in the walls of the BAV aorta is so critical. If markers can be found that will show which aortas are at high risk of tearing(dissection) and rupture, those people could have surgery before it happens.

This is why the recently published work about the BAV aorta at the University of Western Ontario is so important.  At the University of Ottawa, we look forward to the results of research on the aortas of BAV mice.  We are encouraged that there is an increasing awareness of this issue, and there are those pursuing greater understanding, such as the authors of this recent paper about BAV aorta risk stratification.

With Dr. Marc Ruel, Chief of Cardiac Surgery, Ottawa Heart Institute

The treatment for BAV and ascending aneurysms at this time is primarily surgical. While we wait for more answers, being proactive in searching for information and answers, consulting with knowledgeable surgeons at aortic centers, and making proactive decisions together, are all things that we can do to achieve the goal: safe, elective surgery. This young man has had his elective surgery now! He has our very best wishes as he returns home!

Asking questions,

Seeking answers, 

Together we are,

Creating

 a 

Climate of Hope,

~Arlys Velebir

        Bicuspid Aortic Foundation