Saturday, February 4, 2012

"Special Forces" and the Fight with Thoracic Aortic Aneurysm, Dissection, Rupture

Special Forces
Galen Kittleson
I recently discovered a warrior hero in my ancestry. Not one of the ancient Vikings from whom we are descended, but a modern day hero. He was among a very select special operations group in World War II, the Alamo Scouts, and later, unable to resist rejoining the fight, became a Green Beret.

I am so sorry I never met him. He died in 2006. I am getting acquainted with him through a book called Raider, as well as video and articles about him. Galen Kittleson is honored for going right into the thick of the enemy and freeing their captives, going on more raids to free prisoners of war than any other soldier. Through him, I am learning more about the unique role elite forces perform, keeping all Americans free and safe.

It has reminded me of the fight against aortic disease.

Drawn to exploring this subject further and listening to video of  Marcus Luttrell, who wrote the book Lone Survivor, I was again struck by parallels to the fight with an enemy who is elusive, deceptive, ruthless, deadly - the fight with thoracic aortic disease.

The Enemy
Aneurysm - it is an old word, tarnished by death and devastation. In lay terms, it is spoken of as a time bomb, a balloon that can burst, wreaking havoc inside and causing sudden death.

Dissection (tearing but not complete rupture) - this less familiar word has entered the public square more recently, again associated too often with deadly consequences.

These two are the most familiar hallmarks of the enemy, aortic disease in the chest, whose presence has been under estimated, easily confused with coronary artery disease.

The Victims
Who does the enemy target? Today we know there are categories of people at risk, including the millions like my husband born with bicuspid aortic valves. But it is important to remember that this is an enemy that can cause trouble across a wide range of humanity at all ages. One evening a few of us met in a restaurant to discuss organizing the Bicuspid Aortic Foundation. Just before that meeting, I visited two people in the hospital. Both had an incision line down the middle of their chests. Both had Dacron inside. One was a little boy about two years old. The other was a man aged 52. One had Marfan Syndrome, one was born with a bicuspid aortic valve, but threatening them both had been the common enemy, an aortic aneurysm in their chests.

You might think that, unlike soldiers, the physicians called to do battle are safe. No, they have no special protection. They too may be in danger. ER physicians are on the front lines when many diseases attack, including this one. As I write, I am thinking of an ER doctor who died suddenly, presumed to be the victim of a heart attack. There was no autopsy. Later an aneurysm was found in his brother's chest. What really killed that ER doctor? Dr. Michael DeBakey, who pioneered aortic surgery and the use of Dacron to replace diseased aortic tissue, was himself a victim when his aorta dissected in 2005.  Surgery was performed, placing the Dacron he had discovered into his own chest.

Exactly how many dead do we bury because
 of an enemy called thoracic aortic disease? 
No one knows.

Statistics are incomplete. Without an autopsy, even in death the enemy may hide. The heart, completely innocent and sometimes crushed in a pool of blood, is blamed instead. In a family who lost three brothers, it was only with the third sudden death that the enemy was unmasked, putting other family members on guard. Three similar sudden deaths, only one counted against aortic disease.

The Fight
Wars have been declared on heart disease and cancer. At the same time, battles with aortic disease in the chest went on more quietly, mostly out of the public eye. Surgeons began to win more battles, especially when the enemy was found before doing any damage. But surgeons can not fight an enemy that is not found.

Fighting thoracic aortic disease has many parallels to guerrilla warfare, hand to hand combat. The enemy may lurk silently, and if exposed, mimic something else quite harmless. Unless someone recognizes it is not anxiety, not indigestion, not asthma, and keeps looking, keeps thinking . . . the enemy remains hidden.  When chest pain or pressure threaten to expose it, the enemy may distract by pointing to the heart - but there is no heart attack. There is no pulmonary embolism either. What else can suddenly launch a deadly strike in the chest ? The enemy is a diseased aorta, too often never even on the radar screen. 

Those who fight such an enemy need special skills, honed by thinking and studying the enemy's tactics. As Marcus Luttrell has said, the fight does not come with rules clearly written in black and white. Who is up to such a fight?

Never Quit, Never Surrender
From the 1940's Alamo Scouts to the present, some things in particular stand out about these elite forces. They know the enemy. They never quit. They never think they are going to lose. They trust each other completely. They fight to the death.

If you had thoracic aortic disease, 
who would you like to fight the battle with you?

I remember clearly a conversation between two doctors about a patient. One said it was just too much of a mess, too much damage had been done inside. I don't remember what the other doctor said, but I remember what he did. He kept fighting. He won. Who do you want on your side?

My husband had already been in some battles - first replacement of his bicuspid aortic valve and then removal of an ascending aortic aneurysm - and so, I dared to hope the fighting might be over. And then one night I found him, completely helpless, collapsed on the floor. As the paramedics wheeled him out the door, who do you think I called? Someone who would say it was too much of a mess, that it was too hard, there was too much damage? Someone who would say we would never know what happened, never find who the enemy was? No, I called someone who will always fight. Someone who will never give up. Someone who never thinks the battle is lost. And that is why I still have my husband today. For some like my husband, there are lulls between battles, but we can never let down our guard.

Members of these elite military fighting teams are volunteers. Of those who volunteer, very few qualify.  Recently I spoke with someone who has volunteered for the aortic disease fight - someone who cares about those born with bicuspid aortic valves and all others in danger from aortic disease in the chest. Someone who is studying the tactics of the enemy. It gave me fresh hope, fresh courage for the battle. There are still volunteers.

If I could speak to Galen Kittleson today, I would thank him for his service to our country. And as I imagine our visit, we would speak about our common ancestry. But at some point I would tell him about this fight. I know he would understand the cause. He would understand the horror - the dead, the injured, the devastated families. He would understand the victories too.

But one thing he would never understand - giving up the fight.

May there be special volunteers to take this fight to those in danger - to unmask and disarm the enemy among us, thoracic aortic disease. And if you have this enemy within you, may one of them come to your rescue.

Arlys Velebir
Bicuspid Aortic Foundation

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