Sunday, September 18, 2016

September Awareness - Forever 33 - BAV, Aortic Dissection, Rupture

Doug a few days before his 33rd birthday
Forever 33

Sometimes it seems so cold
 to just write about someone.
 Somehow it feels right to address
 this personally to Doug Grieshop.

Dear Doug,

Tomorrow, September 19th, is your birthday. Can it be 12 years now since you celebrated turning 33 with your family? You should be with them still. Tomorrow you would be 45.  Instead, in your pictures and in loving memories, you are forever that strong, vibrant young man of 33.

We still have the first email Stacey wrote to the Bicuspid Aortic Foundation. The title "My Husband" did not prepare us for those first tragic words "My husband passed away unexpectedly...." It is the message of unspeakable loss that we hope never, ever to receive at the Bicuspid Aortic Foundation. For those who do not know, they can read what happened to you here, Bicuspid Aortic Valve and Aortic Rupture .

Doug's children remember
 Daddy's heavenly birthday
I know that knowledge is powerful, but when I remember you, Doug, I realize just how much power it has. As you took those last steps before you collapsed, you had never heard about bicuspid aortic valves and aneurysms of the aorta. You had never heard of  aortic dissection and rupture in the chest.

It seems so wrong that for months you were fighting something very real that no one understood or named, although it should be well known. Recently Stacey was mentioning what happened once again. She wrote of the multiple specialists you saw. There was a stress test. A chest x-ray, but no CT scan. You were given anti-anxiety medication. Of course, those things did not in any way help unmask the enemy in your chest. It hurts so much to realize that the technology and ability were there. In your own state is a world renowned center for treating this. You just did not know.

Doug, it would have been so wonderful to talk to you on the phone, to meet you in person, as we eventually did with Stacey and your family. We would tell you about your aorta in time, so you could get help.

We cannot change what happened, I know. I just want to tell you that because of you, we have the courage to tell others to persist in getting the help they need, to move on and get other opinions when doctors don't understand.

Doug, you inspire us to save others. 
This is your forever legacy. 

This September, 
we continue
to share knowledge 
Creating a Climate of Hope.

With our love,
Arlys Velebir and all the volunteers
at the Bicuspid Aortic Foundation

Saturday, September 17, 2016

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 Awareness 2016 - Learning About the Aorta

Richard Houchin (right) running along the route of the LA Marathon
following survival of aortic dissection
"Aorta? What's my Aorta?"

 As he lay on a stretcher, helpless and vulnerable, Richard Houchin remembers thinking this as he heard voices around him in the ER talking about him. Something was terribly wrong with his aorta, whatever that was!  Click here for details of what happened to Richard that day.

This was the way Richard learned not only about his aorta, but that he had been born with a bicuspid aortic valve. It is not the way anyone should learn this.One of the goals of this awareness month is to raise public awareness of the aorta, and how aortic disease can be detected before it threatens someone's life.

Following are a series of pages on the Bicuspid Aortic Foundation to help learn about this great blood vessel, truly a river of life in the body.

1. What is the Aorta?

2. What is a Thoracic Aortic Aneurysm?

3. What is Aortic Dissection?

4. What is Aortic Rupture? 

Along with these pages, here is a video from the Nucleus Medical YouTube Channel which describes the thoracic aorta and aortic dissection.

Learning together, we can be prepared to discuss not just our heart, not just our heart valves, but also our aorta with our physicians.

As we learn,
and are prepared to speak
with our doctors, 
we are
Creating a Climate of Hope.

Monday, September 5, 2016

September Awareness 2016 - An Interview with Aorta and Heart

An Interview with Aorta and Heart

The aorta is the large artery seen rising up from the heart,
 with arteries branching upward to the head, then curving down
Two vital members of our body, Aorta and Heart, have agreed to be interviewed for Thoracic Aortic Disease Awareness Month 2016, hoping to set the record straight. They have so much to say, but for now agree to each limit this interview to their top three concerns. Aorta, being less famous, humbly lets Heart start first.

 Heart's Top Three

  1. I am being confused with aortic disease in the chest.  
  2. Aorta, you are so important! If you start bleeding around me, I may stop beating.
  3. If it's not the Heart, check the Aorta!

Let me tell you and everyone, Aorta, being famous is not such a great thing. Have you done a search online lately, Aorta? The headlines scream about "Heart Problems", when you, Aorta, are the one with the problems. In these articles, aneurysm and dissection are mentioned - this is about you, Aorta, not me. How confusing is that! I know we are both in the chest, but in the year 2016 we should know better. There are enough problems that do belong to me, the Heart, without confusing me with aortic disease in the chest too. This is not just bad for my reputation, it is dangerous for the whole Body. We need to be very clear - is it a Heart attack, or is it the Aorta? Sometimes, in death, only an autopsy can tell for sure. I, the Heart, do not want to be blamed for deaths caused by Aorta!

Healthy Aorta
Aorta's Top Three

  1. Nobody knows who I am. 
  2. If they do know who I am, they seem to either not respect me or be terrified of me. 
  3. Please, fix me before I break. 
People don't draw pictures of me, and I don't have a month with valentines, chocolates, and flowers dedicated to me. I guess no one ever thought that love was in their Aorta! Once you get to know me though, I am pretty amazing in my own right. There is just a lot of misunderstanding about me. Those who know me best do respect me and want to help me.

I have no desire to tear inside, or worse yet, fully break open. I'll admit, I'm not easy to work on, but it's going to be a lot worse for everyone involved if I start to bleed.  I'm so sorry that no one knows just when I may finally reach my breaking point. There are some clues, but knowing when to fix me is still a big challenge today. Maybe if I become a little more famous, more research will finally be funded. 

Thank you for giving me a special month of my own. I don't need the chocolates and flowers, just some attention! Please let me be clear, Heart does have a lot of problems. Just don't forget about me, your Aorta.  I hope September Awareness 2016 will help everyone learn more about me!

End of the Interview

The interview ended with Heart and Aorta acknowledging how close they are, special friends in the chest one might say. In health, they work together beautifully. They each just want their separate identities and problems to be understood, respected, and treated. They both deserve help and attention when they are diseased. After all, no one wants to be known as a killer. 

Before they left, Heart and Aorta enthusiastically repeated together, along with the interviewer, 

If it's not the Heart, check the Aorta! 

Learning Together
We are
Creating a Climate
of Hope!
                                           - Bicuspid Aortic Foundation