September TAD Awareness - Life-long Aortic Care for Coarctation

The Right Emergency Care at the Right Time
An account published earlier this year describes what happened in 2018 along a stretch of Interstate 90, as one man returned home from vacation with his family. I share the article here:

Heart emergency - right care at right time

Twenty four years after his last aortic surgery, now age 44,  an aortic aneurysm was dangerously bulging in his chest. Who can say why, at that precise moment, his abnormal aortic tissue could no longer hold together and contain the blood pumped with each heart beat? 

In the article, Dr. Jason Knutson describes many things that went right, one after another, in saving his life. He mentions not knowing that the odds of survival were about 2% in a hospital, less out on a highway!  

Yes, he received the right emergency assessment and surgery at just the right time. Reading this article again now, for September Awareness 2021, my initial question remains: why didn't this man have ongoing aortic care and a scheduled, elective surgery to address his aortic aneurysm? 

In the article, Dr. Knutson mentions that after that first surgery, thinking everything was ok while growing up, an athletic heart screening revealed that another surgery was needed; the patch placed on his aorta at age 6 had not grown with him. He had surgery again at age 20. 

Father Prodomos' coarctation
"redo" surgery, patch
and rupture visible

Patching of coarctation was also the initial surgical relief that Father Prodromos Nikolaou had at age 2 in 1981, not repaired again until over thirty years later in 2015 as he writes here: The Hidden Danger: A Patched Coarctation . How long had it seriously endangered him before being addressed?  As pictured, surgery removed that section of aorta completely. It is important to warn others of such life-long risks!

Life-long Aortic Care - "the right care at the right time"

For those wishing more detail, this full paper from 2015 covers coarctation, including BAV and aortic aneurysms also.

Current management of coarctation of the aorta 

Regarding surgical solutions, the paper states that the patch solution is "avoided whenever possible due to the frequent occurrence of aortic aneurysm and rupture".

Prior to their conclusion, the authors write of this as a "lifelong disease" and the importance of "life-long surveillance", whether the coarctation has been repaired or not. 

The knowledge exists.  Are people receiving the care?

Life-Long Aortic Care and Coarctation

In the early years of  BAF, we came to know a talented young athlete who was diagnosed with BAV and coarctation. He had surgery while still in his teens. His family became well informed and understood the importance of ongoing vigilance.

We were also contacted by a very worried Mom. She had taken her 10 year old daughter to the doctor because of headaches. I will call this little girl Sally. The bottom line, following testing: Sally's aorta was narrowed, just past the arch (coarctation), restricting blood flow and building up pressure in the vessels feeding her head.

After I spoke with her Mom, she put Sally on the phone. I still hear her sweet voice across the years. I spoke to her once more, after she was out of the hospital. She told me in a very serious tone that she had been in the hospital "a long time" - not so long really, but it is always too long, even for adults - how much more at age 10!

Her Mom shared Sally's picture with us at BAF. A lovely young girl then, Sally would be in her 20's now. I hope she is living the active, vibrant life that awaited her then. I would be so happy to hear all about her life now. Most of all, I want to know: is Sally receiving Life-Long Aortic Care? 

For those with coarctation,

Life-Long Aortic Care

is

 "the right care at the right time"

~Arlys Velebir, Bicuspid Aortic Foundation

September Awareness 2021 - Why "TAD" Awareness

2001  and "TAA" (Thoracic Aortic Aneurysm)

My personal involvement with aortic aneurysm in the chest began 20 years ago, in 2001. There was so little public information then. My late husband's physicians, although carefully monitoring his anticoagulation levels, had not  followed his aorta in the years following his BAV replacement. Believing a mechanical valve equaled "fixed for life", we were comfortable with only a very few echocardiograms in the following years. We were spared an aortic catastrophe when one of those echocardiograms, to check on the 11-year-old mechanical aortic valve, "discovered" the bulging aneurysm above it. 

2005 and Thoracic Aortic Aneurysm and Dissection (TAAD) Awareness

We read medical references in our search for information and help in 2001, where we found an unfamiliar term, "aortic dissection".  By 2005, when the Bicuspid Aortic Foundation first observed awareness for the aorta in the chest, we had learned about aortic dissection, the "D" in TAAD.

We learned the medical definitions, yes, but much more, we learned the meaning in human terms, for individuals and families. We do not forget those we met in those beginning days.

It is the human experience that ultimately defines these medical words:

 those who die, 
those who survive with injury,
 those who have elective surgery with desired outcomes.

2021 and Thoracic Aortic Disease (TAD) Awareness

With the passing of the years, at BAF we met others with additional aortic complexities such as coarctation. Again, we had learned the terms first, but their meaning comes from meeting those who have them - from children to adults. Consequently, we have adopted an umbrella term - "Thoracic Aortic Disease" to include them as well. 

One Man's Life-Long Aortic Journey Until Now 

Father Prodromos Nikolau's life experience with TAD began at age 2 in 1981, and thus far has included the following:

• coarctation repair (1981)
• BAV replacement (2000)
• "Thinking Everything is Fixed" (after BAV replacement, annual cardiology visits)
• discovery of Aortic Root Aneurysm (2007)
• root and ascending aortic aneurysm repair and replacement of prosthetic aortic valve due to strands (2013)
• "redo"of original coarctation repair (2015)
• ongoing checkups, life-long aortic care

 At the following two links are the details, in Father Prodromos' own words:

Journey Beginning  from Age 2 

Hidden Danger of Patched Coarctation

"So, life is precious"

 as Father Prodromos wrote,

and life can be extended 

for those with TAD

when they receive

 Life-Long Aortic Care.

~Arlys Velebir, Bicuspid Aortic Foundation

The Gift of Pain

Father Prodromos

Father Prodromos has had four surgeries, the most recent one a second repair of his aortic coarctation, which was first treated in childhood. The incision to access this part of the aorta is on the side, underneath the arm. He has lived with chronic pain since that surgery. Here are his reflections on his life now, written on this Christmas Day, December 25, 2016, from the monastery in Cyprus where he lives.

As I see it, one of human’s most common weaknesses is obliviousness. We tend to forget even the greatest gifts life has given us throughout our journey in time. So, it is no wonder that I honestly thank God for an unusual gift I was given by His all-caring and fatherly providence: pain!


Pain really is a mystery. Why some people find themselves in chronic pain after a surgery and some not? Why some people struggle all throughout their lifetime against this uninvited friend and some never even get the chance to meet him? The answer is never to be answered. One needs to find his own, very personal way to get along with the lifelong reality of pain. And for me, St Paul has portrayed the most blessed approach to this phenomenon. He writes:
“Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh… Three times I pleaded with the Lord to take it away from me. But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore, I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses… in hardships… in difficulties. For when I am weak, then I am strong.”
Mrs Arlys Velebir was the one to correlate this verse by the Apostle to my state. She did that when at my first year’s anniversary after my surgery in 2015 I wrote to her the following about my pain: “every day we all face what our Lord allows to come in our lives, trying to make the best of it for the benefit of our eternal existence: perfect love to God and our neighbour under any circumstances. So, glory be to God for all things!”

Yes, I would forget about that wonderful miracle that took place in the operating room in January 2015. If you read my story on the BAF’s site, you will easily understand that what happened on that day was nothing usual. If I was in the hands of any other surgeon on that day it is really doubtful whether I would be now sitting and writing this. Not to mention that I would have never even made it to surgery. So, I had to remember; I have to always remember. But for this I needed this tiny little thorn. To others such a thorn might feel like a sharp blade. Not to me. To me is a wondrous reminder. It constantly reminds me that gratefulness is human’s most noble expression of love and understanding. I am so very grateful for this friend I was given, to walk along with him the remaining of my life and every single day to acquire the most precious knowledge from my relationship with him: “when I am weak, then I am strong!”

My dear friends, I have undergone 4 open-heart surgeries up until now with the possibility of even more to come. As the second anniversary of my last surgery is approaching, this is my message to all of you for new year: accept pain, every and any kind of pain -spiritual, sentimental, psychological or physical- with one thought: Pain makes us human. And only human can love. Therefore, the more we hurt, the more we love; and love is our destiny.

I trust that since this comes from someone who really knows what pain is, it should then count a little something to you! 


God’s love be with you all. Happy New Year!

Father Prodromos

Read the story of Father Prodromos' redo coarctation surgery experience here. 

September 2016 Awareness - Learning about Aortic Coarctation

What Did Sarah Have? Coarctation and BAV 
Sarah would be 20 years old now, a young woman. When I spoke to her she was just half that age and facing surgery. Sarah's Mom contacted the Bicuspid Aortic Foundation when they learned that Sarah was going to need surgery. A bright, athletic girl, Sarah began to have headaches. Doctors found she had high blood pressure, and further searching found both a bicuspid aortic valve and coarctation of her aorta. Sarah's Grandfather also had coarctation, they were not sure if had a BAV or not.

Here is a video from Children's Hospital of Cincinnati that explains what coarctation of the aorta is:

I spoke to Sarah's Mom first, and then she asked me if I would speak to Sarah too. What did I say to this beautiful, brave 10 year old girl before her surgery? I told her that she would be just fine, and that she was very special.  I also remember speaking to Sarah after she was out of the hospital. She did indeed do well, very seriously telling me that she was in the hospital for a very long time. If it is an eternity for adults, what must it seem to a child. They all so desperately want to go home.

I have not heard from this family for 10 years now, but I remember them fondly. I hope Sarah as an adult is experiencing all that life should hold for a bright, active young woman. I hope she has wonderful doctors and keeps her check up appointments faithfully, both for her aorta and her BAV.

Father Prodromos and Coarctation

More recently, Father Prodromos sought help from the Bicuspid Aortic Foundation. He was just a tiny tot when he had his first surgery, for coarctation of the aorta. In the intervening years, he has had three additional surgeries: BAV replacement, prosthetic valve and aneurysm replacement, and repeat surgery on the coarctation site.  Father Prodromos' last two surgery experiences are described at the links below.


Father Prodromos - My Journey of the Heart

Father Prodromos - My Journey of the Heart Continues

It is very common for those born with coarctation to also have BAV. May these accounts of those needing help first as children give hope to those today who must cope with this, no matter what their ages.

Sharing our lives

Together We Are

Creating a Climate of Hope.

All Best Wishes,

Arlys Velebir

Bicuspid Aortic Foundation

September 2016 Awareness Month - It's All About the "Big A" in the Chest!

Normal Aorta

The aorta is so important,

 we call it the "Big A"! 

To baseball fans in the US, the Big A means Angels Stadium in southern California. At the Bicuspid Aortic Foundation, we mean something else; to us, the Big A is the aorta in the chest. It is the largest artery in our bodies, and it's proper functioning is without question vital to our lives.

Why does the aorta need its own awareness month, September?

Maybe the aorta could just share February with the heart?

Tragedies happen when no one thinks about the aorta. In the emergency room (ER), someone with chest pain will be checked for a heart attack. The blood tests come back normal, so is the EKG. It's not the heart.

No one thinks of the aorta.

The minutes go by, turning into hours. Sometimes the person is still in the ER, sometimes they are back home. Suddenly, they are dead. The opportunity to help them was missed. 

All because no one thought about the aorta.

This is one reason that the aorta needs its own month - just to help everyone think about it in time.

Aorta with aneurysm

Another reason is that aortic disease is very different from what is typically called heart disease. The treatment is different too.

Aortic disease is not heart disease!

If it's not the heart, check the aorta! 

Let's Learn All About the Big A this September!

In a nutshell, this large, high pressure artery should not be confused with the heart. Having its own month provides a time to learn about the aorta in the chest: what it does, the risks aortic disease presents to us, and the treatment available when needed. 

At the Bicuspid Aortic Foundation, we will spend this September featuring articles on the following topics:

• Thoracic Aorta - what it is, what it does
• Thoracic Aortic Disease
• Thoracic Aortic Aneurysm
• Thoracic Aortic Dissection
• Thoracic Aortic Coarctation

We will also honor the memory of those who were cruelly taken from us by thoracic aortic disease, and the courage of those who live with injury caused by thoracic aortic disease.

Shining a spotlight on 

the Big A,

Together we are

Learning, Sharing,

Empowering each other,

Creating a Climate of Hope.