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

The Power of Hope and "Redo" Aortic Surgery

Introducing Joseph
It was 10 years ago. We were two voices on the phone together. We have never met in person. I have never seen his picture. None of that matters, not then and not now. What mattered was what we said to one another.

His name is Joseph. Heart surgeons refer to someone like him as a "redo".

His daughter had put us in touch. He was already a survivor of an aortic crisis, having come through aortic dissection and ascending aortic aneurysm surgery. Now his bicuspid aortic valve had become calcified and narrow. He was facing another major open-heart surgery, not so very long since the last one.

Yes, surgeons call someone like Joseph a "redo". I had heard some things about "redo's", such as the challenges of scar tissue that can make even opening up the chest safely a challenge.

An example of BAV Stenosis
This was not Joseph's valve!

How could I help Joseph? 
By this time, I had already been through enough in my own family to know about facing hard things, including more than one open-heart surgery, because of BAV and the aorta.  I also knew how much strength and ability to heal those with BAV often have. They are generally not "frail" people, and as Joseph told me about himself and how active he was, I recognized that strength in him.

He had already come face to face with death when his aorta tore. He had come through major surgery to replace part of his aorta. Now it was his stiff, calcified BAV forcing intervention. Before open heart surgery and artificial aortic valves, the end state of aortic valve stenosis was heart failure ending in death. There was no question the stenosis could not be allowed to weaken his heart and end his life, when a surgeon could help him. He already knew these things from his doctors. I must leave to them all the challenges of a "redo" surgery.

Joseph didn't need information from me. 

He didn't need any explanations either.

He needed hope.

"Am I going to make it?"
I am so glad that Joseph felt comfortable asking me this, the life-and death question that weighed heavily as he chose to have surgery again:

"Am I going to make it?" 

Across the years, I hear once again the sound of his voice as I write this.

"Yes, you are! And we will talk again!"  

And talk again, we did! 

What a moment, hearing his voice again!

 Yes!!!

There is nothing like it! 

Courage

Red Jasper
The Warrior Stone of
Strength and Courage

Fear is normal; we all have fears to face when entering a hospital and having such major surgery. Courage enables us to go forward, despite our fears, and receive the help being offered. Joseph was a very courageous man. It was my privilege to support his courage, knowing that others had come through multiple surgeries like this.

I have sometimes used the analogy of surgery being a doorway or a gate; something we go through and there is our life once again, the diseased valve or aorta that plagued us left far behind.

A decade has passed. Joseph was not a young man back then. Age in itself is not a limitation to receiving help! How beautiful to think of  him continuing forward and having the precious time since then.

Hope
Thinking about Joseph today inspires and moves me to share this experience with others. There are others facing yet another surgery because they were born with a bicuspid aortic valve; others needing hope and support of their courage today.

Perhaps I should mention that my late husband had a total of four open heart surgeries over 27 years. Four precious times when I could keep my promise to welcome him on the other side of the surgery door, as he awoke from anesthesia.

There is so much that is possible today, while we look forward to an even better future. TAVR technology has continued to improve, emerging as an option to be individually considered in cases of both native and prosthetic aortic valve stenosis. While we must continue to speak up about our needs and the things that must be improved, this hopeful "climate" surrounding us is central to the Bicuspid Aortic Foundation's mission.

Joseph and I are sharing

this especially with you,

As you bravely choose and prepare for

 another surgery,

 "Creating a Climate of Hope".

~ Arlys Velebir

                           Bicuspid Aortic Foundation