Showing posts with label Memories. Show all posts
Showing posts with label Memories. Show all posts

Sunday, September 21, 2014

Bicuspid Aortic Valve and Aneurysms - Ten Years Later

Doug in September 2004
Ten Years Ago, in 2004

Ten years ago, on September 20, 2004, Doug Grieshop died when his aorta ruptured. He had an undiagnosed bicuspid aortic valve and an aortic aneurysm in his chest.

Eighteen months earlier, Doug went to the ER with chest pain. Nothing was found then. It was left for the coroner, after his death, to find the scar of an old tear, next to the rupture site.

A weakened, diseased aorta may "hang on" for some time, because it has an outer layer designed to be stronger than the others. For Doug, that outer layer held on for a year and a half. When it broke, there was no time to save him. He was instantly gone.

What would happen ten years later, in 2014?

If Doug went to the ER, would they still check him for a heart attack, find he did not have one, and stop there?

Or would they go further? Would they find his bicuspid aortic valve, his aorta bulging dangerously?

Would today's technology be able to "see" the small tear in his aorta? If not, would they still take his chest pain and aneurysm seriously?

Would they ask him about his family history? His uncle died in the same way. Family who saw them say that in death they both looked like they had "exploded". A horrifying memory.

Would they refer him for surgery in time?
 Ten years later, would someone save Doug?


In some communities in the United States, we know what happens today. Some aortic emergencies are being found in time to save lives. But we hear of the dying. Still. In 2014.

For one man, it happened like this.

Always healthy and active, he arrives in the ER. He tells them about a feeling of pressure and burning in his chest. He is short of breath. They check for a heart attack. Negative.

They know there is another killer in the chest - pulmonary embolism (blood clot in the lung). They rule that out too.

They keep him in the hospital, continuing to speculate. The family hears words like acid reflux/heart burn. They even hear about sleep apnea! Eventually they hear he has a bicuspid aortic valve that might need surgery "some day".

Although BAV is a red flag for aneurysm in the chest, finding it did not raise the alarm. Was it because there is a persistent impression that bicuspid aortic valves are relatively harmless?

For this man and his family, many hours went by, spent guessing about conditions that are not immediately deadly.

At times, he felt better. But all of a sudden, something terrible happened inside. At that moment, it was already too late. Many hours were spent desperately trying to save him. It was impossible. Time had run out.

He had bled massively inside his chest. The respirator would continue to breathe for him. His brain was dead.

Is this the best we can do, 10 long years later?

There are many unanswered questions and conflicting guidelines for those with bicuspid aortic valve.
We know we need more answers.

However, we ask for those with BAV what we ask for everyone else. We ask that this often varied condition be viewed with respect for its potential deadliness.

Please do not forget that the diseased aorta is right up there with heart attack and pulmonary embolism.
It is a killer.

There are little children growing up without Daddy,
 grieving wives, heart broken parents.
 Brothers and sisters wondering if this will strike them also.

For everyone with a bicuspid aortic valve
 who will never have an aortic emergency,
 we rejoice. 

But we are called to speak
 for those vulnerable to tragedy.


His daughter was born 4 months after Doug's death
Doug's children in 2010





Their children should not grow up without them.







And their family members should not live in the shadow of fear
 that some day this could happen to them also.


We are
continuing to tell their stories,
raising awareness of the danger,
while living
in a climate of hope.

- the Bicuspid Aortic Foundation
















Saturday, September 6, 2014

Scott Nichols - Bicuspid Aortic Valve and Dissection



Scott Nichols with his son, Carson, on the golf course
Words do not come easily when trying to capture the essence of Scott Nichols. In the prime of his life at age 41, he was a husband to his wife Jennifer, father to his daughter and young sons, friend to many, a special education teacher, and a coach.

Scott coached a high school hockey team as well as being the goalie coach for the NAHL Port Huron Fighting Falcons. He had a lifelong love of sports and continued to play many himself - hockey three times a week, softball, and golf.

Yes, Scott was a very special man, known to so many in his community and state.

There was something else special about Scott. Something that no one, not even Scott himself, knew. He had been born with a bicuspid aortic valve.

A Snow Day in Michigan and Chest Pain
Even in Michigan, where those who live there are prepared for winter, some days the weather is just too severe, and schools are closed. These "snow days" are unexpected free time for students and teachers alike. On a snow day in late January, 2014, Scott Nichols made the most of this unexpected gift of time, packing it with activity. He played basketball with some of the other teachers, and then went on to coach two different hockey teams. Later that evening, he was out on the ice playing hockey himself when he felt the chest pain. 

No Prior Warning
There was no warning that this strong, active man had anything wrong until chest pain forced him off the ice and to the local emergency room. There his heart was checked, and a heart attack was ruled out. The next day his bicuspid aortic valve (BAV) was found. He continued to get worse. What was happening inside Scott? More testing found it. Like many with BAV, Scott's aorta above his BAV had been bulging dangerously (aneurysm). The weak, bulging tissue had torn (dissection). Scott was bleeding inside.

Life Flight to University of Michigan
Scott needed to reach a medical center equipped to perform emergency surgery on his aorta. He was flown to the University of Michigan in Ann Arbor. There, as his family waited, surgeons battled for 14 hours to save him, repairing the terrible injury inside him. But the damage was too great. It had been too long without blood flow to vital places inside him. On January 31st, Scott Nichols was declared brain dead.

Disbelief, Shock, Mourning
Scott (in blue) at the golf course with friends

Scott's family, students, fellow teachers, and friends all descended into shock and deep mourning. This article from the The Voice, February 3, 2014, Scott Nichols Impact Felt, describes the anguish and tremendous sense of loss. As mentioned in the article, with hearts broken the Port Huron Hockey team decided they would play their game the next day in his honor. In the words of Coach Pionk, " ... people like Scott Nichols don't come around very often."

September is Chest Aneurysm and Dissection Awareness Month
The Bicuspid Aortic Foundation observes Chest Aneurysm and Dissection Awareness Month in September.  This same month is observed for brain aneurysms, which also occur in some individuals with BAV. This year, we are deeply grateful to Jennifer Nichols for bravely sharing what happened to her husband just a few brief months ago. She does so in the hope that it may save the lives of others. BAV is estimated to exist in 1 of every 50 people, predominantly in males. 

How many other athletic men in their prime
 are at risk from a bulging, weak aorta?

We do not know. 
We do know that finding a BAV is a red flag 
  • to look further 
  • to find the hidden danger 
  • and to have surgery before a life-threatening emergency.

We hope that through the tragedy of what happened to Scott, the life of someone reading this will be saved. Maybe someone strong and healthy like Scott. Someone who feels great, but gets his heart checked, and finds out he was born with a bicuspid aortic valve. 


In raising awareness
of the risk and the danger,
we  seek to create
a lifesaving
 climate of hope.
From all who volunteer
with the Bicuspid Aortic Foundation.





Sunday, March 23, 2014

Bicuspid Aortic Valve and Aortic Disease Answers Are Blowing in the Wind

Kyle Wilson
sudden death
BAV and aortic dissection
Chuck Doherty
sudden death
BAV & aortic stenosis


"Yes, how many deaths will it take 'til he knows

That too many people have died?


The answer my friend is blowin' in the wind,
The answer is
blowin' in the 
wind." 
                                  - Bob Dylan, 1962

Doug Grieshop
sudden death
BAV and aortic rupture

Friday, we received that most dreaded message once again.

Because we know those with BAV very well,
reading the words,
we feel we know this person, born with BAV.

". . .  very athletic."
". . .  so healthy."

We hold our breath . . . .

"He is dead."

And then we cry.

How many, oh, how many, must die?

Sometimes we read of their tragedy, although we may never meet these families. 





Sometimes, a bicuspid aortic valve has been found,
 and the person was under medical care.

Sometimes the BAV had not been diagnosed.

In both scenarios, there is death.

Why, oh why?

Sahib Singh Vaseer
death from
BAV and endocarditis
We are left to ponder very serious questions.

Where are the answers?

They are as ethereal 
as wispy white clouds,
driven by the wind.







Other families, like mine, avoid death
 but cope with life-long injuries,
both physical and emotional.

That is why Robby Benson, 
a veteran of four open heart surgeries,
entitled his book

A recent paper from a consortium of centers studying BAV, with authors from around the world, is aptly titled, "Surgical treatment of bicuspid aortic valve disease: Knowledge gaps and research perspectives."

We simply cannot tolerate, cannot bear the tremendous ache with every injury, every death in BAV families. Yes, their trileaflet aortic valve family members also are at risk. These knowledge gaps are not small things.

Those pictured here speak to us of major complications that may strike down even the young and strong - the aortic valve itself, aortic dissection, aortic rupture, and infection (endocarditis).

To remind us all of the tremendous problem, and our shared responsibility to conquer this centuries-old monster, this blog has adopted "Blowin' in the Wind" as our theme song. 


Glimpses of small 
numbers of people, 
watched only
for a few short years,

Fragments of information
blowing in the wind,

Will not answer our questions,
will not satisfy our needs.

May we all resolve
to take action,
to free humanity at last
from this plague.

                                                                                                 - Arlys Velebir
                                                                                                   Bicuspid Aortic Foundation


Sunday, April 21, 2013

Come Out and Run! The 5K for C.A.D.: Conquering Aortic Disease

Chuck Doherty Running in 2010
On April 15, 2012, the unthinkable happened. 

A loving husband and father, a strong young man, was struck down in his prime. Charles "Chuck" Doherty was just 34 years old when he lost his life without warning. Why? Chuck was among the children born in 1977 with a bicuspid aortic valve. He died from complications related to that valve following what was for him an ordinary eight mile run.

You can read more about him and his family here, at the Charles A. Doherty Memorial Foundation. Those of you reading this who have a bicuspid aortic valve yourselves will recognize that you share some things with him - his love of athletics and activity in general are a common theme in those with BAV.

Reading about him, we would all have loved to know Chuck. We can never meet him now. In a moment of time, he was taken.

There is something we can do. We can tell his story, and remind doctors that valvular heart disease is not just a risk to the elderly. It can take the young and the strong.

We can also raise funds that can be applied to research. There are questions that need answers. Do those with bicuspid aortic valves need special guidelines for monitoring and intervention for their BAV? After all, those with BAV are extraordinarily active and athletic. Given their unusual endurance and strength, could at least some of them follow a different path than their tri-leaflet counterparts? Could their first obvious symptom be sudden death?

Chuck Doherty lost his own life, but through those who love him, he will save the lives of others. Let's join them in the quest to Conquer Aortic Disease. Register for the race, or donate here.