TAD Awareness 2019 - A Virtual Walk about BAF's Beginnings

September is Thoracic Aortic Disease (TAD) Month. What is it about?  Do we need a month just for TAD? Maybe we can explore this together, on our virtual walk today. This beach is a great place to walk - ocean breezes, blue skies, and the sand beneath our feet! Let me start by telling you my own experience with aneurysms and how the Bicuspid Aortic Foundation was born.

Aneurysm - A Medical Term

 There are technical words -  medical terms - used to accurately describe, communicate, and treat conditions and diseases. Medical textbooks and papers are appropriately written with such words. Thoracic aortic disease has these words, and I try to be very careful to use them properly. The visible indication of disease of the aorta in the chest is the medical term aneurysm, taken from the Greek, meaning widening out or dilatation. Some day maybe there will be other markers to find disease in the aorta even earlier!

My Definition of Aneurysm
For me, the most important meaning is the human experience. And so, on this walk, it is not the technical meaning I want to explore, but the meaning as defined by the lives who have been touched by it. Let me tell you about some of them.

Aneurysm and My Friend
Aneurysm, not in the chest, but in the brain was my first actual experience, my first real understanding, of this word. It entered

Decades have come and gone since
Saying goodbye at my friend's graveside here
She remains in my memories always,
Where she is forever 33

my life on a Sunday afternoon, with a phone call. The message was unbelievable - my friend was hospitalized with bleeding in her brain. Over the next few hours, there was more bleeding, nothing could be done, and gradually her still young body began to fail. She was gone. My memories of something so shocking have not faded. I still hear a little boy, scarcely more than a baby, crying for his mother. I still feel the grass beneath our feet as we walked to the graveside for that final goodbye. My definition of aneurysm stems from this experience - a crying child, a devastated husband - broken hearts forced to go on without someone so loved, so needed. Nothing could be more cruel than such a sudden, deadly killer.

Aneurysm Where?
I continued to be aware of brain aneurysms because of the loss of my friend. Did you know that aneurysms could be in the chest? I didn't. I thought they were in the brain.

Shocked and Terrified - an Aneurysm Above His Heart
When they stumbled upon the aneurysm above my husband's heart, I was shocked. I was terrified. I didn't even know it was possible! Deep inside was that real life definition of aneurysm I had learned years before. I thought this was going to kill him!

How could this be? He was supposedly fixed for life by his valve replacement surgery. I thought somehow they injured him when his BAV was replaced. After all, no one was saying anything to BAVers about aneurysms back then (1990). (They should have, as there were medical papers that associate BAV and aortic aneurysm in the chest - my favorite is Dr. Abbott's paper published in 1928!)

I kept my worst fears inside as we searched for answers. It was difficult, but we found our way to help.

Killer Disarmed by Successful Surgery
Can you imagine the feeling of relief when you are told that a ruthless killer has been disarmed? It was a wonderful, physical sensation that flowed though me, when the nurse told me that the aneurysm was removed, that the surgery had gone very well! Every step to reach that point, to find someone to help us, was so worth it! The aneurysm was gone. I would not find myself prematurely weeping at a graveside because of an aneurysm!

I knew how hard it had been to find that help. My only thought was to make it easier for others to learn about BAV and aneurysms - because when found in time, this killer could be disarmed before causing terrible bleeding inside the chest (dissection, rupture). I had seen it done!

BAF is Born
In time, out of the conviction that accurate information and knowledge can empower us to find help, the Bicuspid Aortic Foundation came into being.

After officially becoming a nonprofit, the first donation the Bicuspid Aortic Foundation received was a check in memory of Doug Grieshop. Doug's widow was the first family to contact us about untimely death from an aneurysm.  Doug had just turned 33 . He left behind his wife, young son and unborn daughter, other family members, and friends. Aneurysms, at their worst, take one life without warning and cause indescribable pain and suffering to those left behind. It is 15 years this September since they lost Doug, in 2004.

BAV and Brain Aneurysm
I know this is supposed to about aneurysms in the chest, this month of  September. Somehow, as we walk together, I am thinking of my friend and fellow board member at BAF, Carrie Mettler. Clicking here,you will find her story about BAV and brain aneurysm.   The discovery and successful treatment of her brain aneurysm is proof that those with aneurysms of the brain need not be terribly injured and lost either, when it is found in time!

Why TAD Awareness?
Doug Grieshop's family was the first to contact us about an aneurysm causing sudden death, but sadly, many others have followed.

We do not want anyone to experience an aortic emergency, 

we do not want to lose anyone else,

which is why there needs to be more awareness. 

 It is still a problem for those at risk to receive proper imaging of their aorta! Less than a year ago, I urged a family friend to request a CT scan of his chest (an echo had found a BAV). The cardiologist refused, saying it was unnecessary! Can you imagine saying it is not necessary to unmask and disarm a killer?! When physicians may not know or understand, it is important to keep seeking help through other opinions. Our friend eventually received the expert screening he needed, elsewhere!

This has turned into a long walk, so let's enjoy the sunset before we leave! 

Thank you for walking with me, 

Remembering those we have lost,

Others who were saved ,

As together, we create a Climate of Hope,

~ Arlys Velebir

                          Bicuspid Aortic Foundation

TAD Awareness 2019 - A Virtual Walk with Larry Abramson

September is Thoracic Aortic Disease Awareness Month
In 2019 BAF is raising awareness about Thoracic Aortic Disease through a "virtual" walk. From time to time this month we will invite you to walk along with someone with TAD, through reading their story.
Here we invite you to come and walk alongside Larry. He has an amazing story to tell, beginning at a very young age! Today he continues to live his very active, adventurous life! We hope that "walking" with him and "listening" to his story will inspire you to do the same! 

Age 4 - Diagnosis, Age 11 - First Valve Surgery

Larry Abramson

My BAV was discovered during a routine exam in 1959 when I was 4 years old. I was monitored every 6 months and restricted to "no sudden exertion or contact sports". But, life went on until Dec 1966 when I started having some issues with shortness of breath and actually fell while swinging on a rope hung from a tree. In Feb 1967, because of a thickening of the valve where the 3rd leafet would have been, the day after my 12th birthday, I went in to the hospital where they performed an aortic commissurotomy (opening up the valve to allow the valve to function better) but was told that the repair would probably only last about 7-8 years.

Age 20 - Second Valve Surgery

In 1975, I once again started having issues with shortness of breath and this time, at age 20, I went in and had a mechanical valve put in my heart at Bryn Mawr Hospital in PA. It was amazing to see the difference in the procedures in the 8 years since my first surgery. After the first surgery, I woke up naked, laying in an oxygen tent, on a bed of ice with the oxygen running through ice so they could bring my body temperature back up to normal very slowly. 3 days later, they finally allowed me to start eating a normal diet. This time, my body temp was already back to normal and, had I not accidentally pulled one of the drain tubes loose which collapsed my lung, I would have been back in my room the next day. From that day forward, I had a fairly normal life with no issues, and was just monitored every 6 months, though of course my Pro-time (now measured differently and called INR) was checked monthly.

Age 53 - Aneurysm Diagnosis and Third Surgery 

Larry and Michele in NYC in 2008, 10 days after surgery!

In 2008, I saw my cardiologist in June and was told everything was fine. In early July, I was browsing the internet and came across The Bicuspid Foundation website. While looking over the site, I found that they had recently discovered that people with BAV were developing aneurysm's in the ascending aorta. Well, I had just seen my cardiologist and he didn't seem concerned, so maybe it wasn't a big deal. But...the more I thought about it, the more concerned I became so I emailed the Bicuspid Foundation website to inquire about it. The next day, I received a message on my cell phone from Dr Sharo Raissi who was the medical advisor for the website and the Director of Thoracic Surgery at Cedar Sinai Hospital in L.A. The message said "this is my personal phone number...you need to call me...we need to talk!". Well, this was certainly disconcerting.

So, I called Dr Raissi and we discussed the fact that I had also had some hernia issues, which he explained were also connective tissue and that I should probably have an Echo or a TEE to get a baseline measurement. So, I called my cardiologist and we discussed it. At that time, he had not heard about the aneurysms but was willing to look into it. He called me back about a week later and agreed to an Echo. On July 25, 2008 I had an Echo which, according to the radiologist, revealed a 50mm (5.0cm) aneurysm in 2 places in the mid-to-distal ascending aorta. My cardiologist determined that I probably should see a surgeon, though he also admitted that there probably wasn't anyone in the Memphis area that could do it.

I saw a surgeon here, and my wife and I decided that he wasn't the one to do my surgery. So, I got copies of my films and did much research on the internet as to the best surgeons to perform this type of surgery; we sent them to a number of surgeons across the U.S. including Dr Raissi, the Mayo Clinic, Massachusetts General, Weill Cornell Medical/NY Presbyterian and a few others. Dr Raissi said that, in his opinion, the aneurysm looked to be about 5.4cm, and I got similar opinions from the other doctors.

After much discussion, we decided to go to NYC and NY Presbyterian to have my surgery done by Dr Leonard Girardi and on September 11, 2008, my aorta was repaired/replaced along with replacing the valve again because even though the original mechanical valve was working great, it was determined to be easier to put a one piece aorta and valve in vs trying to connect an artificial aorta to a mechanical valve.

Today

Now...eleven years later and 52 years after my first heart surgery, I'm still here kicking though granted, not as hard as I used to. I thought I would share this for those of you who are just finding out about your BAV, or that your child has BAV. It's a shock to find this out to begin with, but life goes on and you, or your child, can lead a normal life (yes, normal...I spent 32 years as a Federal Law Enforcement Officer, 19 years as a volunteer firefighter, I scuba dive, I rode a motorcycle for 20+ years (yeah, I know...not too smart being on Warfarin), and generally enjoy life. 

Hang in there...it will get better!  ~  Larry Abramson

Thank you, Larry, for sharing your life with us,

and

Creating a Climate of Hope,

~ Arlys Velebir

                          Bicuspid Aortic Foundation

TAD Awareness September 2019 - A Virtual Walk to Raise Awareness

TAD Awareness 2019 - A Virtual Walk to Raise Awareness of Thoracic Aortic Disease

Perhaps we can imagine a virtual walk together along the beach!

A Virtual Walk Together
Individuals and families impacted by thoracic aortic disease (TAD) are found all over the world. There are readers of this blog in many different countries, and it is likely we may never meet in person. However, this month we would like to take a "virtual walk" together with all who read here, through sharing stories of those with a form of TAD. We invite you to imagine walking with them for a few moments, as you read about them..

Background

Our imaginary walk together might take us here!

There was no awareness month for the aorta in the chest when the Bicuspid Aortic Foundation was formed. We believe it is important that, separate and distinct from what is commonly referred to as "heart disease", there is greater awareness of this major, vital artery that rises from the heart and the potential for life-threatening emergencies when it enlarges due to disease (aneurysm), tears (dissection), or ruptures. For those born with an abnormal aortic valve, such as those with bicuspid aortic valves (BAVs), they may at some point need both  their BAV, which is the doorway between the heart and the aorta, and an aortic aneurysm addressed. And so, we chose the month of September, a month far away from February, to distance thoracic aortic disease (TAD) from heart attacks and any confusion with what is commonly known as "heart disease", whose month is February. The aorta is worthy of having a month of its own!

You Are Not Alone

We need not walk alone with TAD!

We hope that in sharing real life stories this month, they will both inform and inspire all who read them, no matter where we may find ourselves in our personal journey with BAV and other forms of TAD.

There are many uncertainties and each each journey may be a little different, but we need not walk alone!  If we at BAF can share information with you, or just be there to listen and care, don't hesitate to reach out and contact us!

Walking together in September 2019

We are

Creating a Climate of Hope,

 ~ Arlys Velebir

                            Bicuspid Aortic Foundation